About HNPP

HNPP – A Short Description

The information on this page is thought to be correct at the time of publication. Please understand there maybe minor errors, but I have endeavoured to keep the information consistent with current medical knowledge. Please post any comments or suggestions relating to this document on the discussion page of the website.

Thank you. Jmleonard.

Hereditary Neuropathy with Liability to Pressure Palsy

Hereditary – Can be passed on to children with a 50% chance of inheritance.

Neuropathy – A disease affecting the Nerves.

What Is A Pressure Palsy

Pressure palsies are the main hallmark of HNPP. They are often the main presenting symptom which will lead to medical intervention and eventual diagnosis.

Pressure (or physical trauma) on a peripheral nerve will result in unusual sensation, tingling, then a numb sensation, weakness and eventual loss of function of the muscles supplied by that nerve.

Most people can experience some symptoms of a pressure palsy after prolonged pressure/trauma to a nerve. Mostly these will resolve very quickly within a minute or two.

People with HNPP will experience these palsies after only a brief period of pressure. The amount of time for them to resolve will be prolonged. This may take minutes to several weeks or months, depending on the type of injury, and any previous nerve injury.

What Nerves Are Affected

HNPP is a Sensory-Motor neuropathy. Muscles, Senses for those Muscles and Skin sensations (touch, vibration). (see note 1)

Peripheral Nerves – those outside of the spinal column, mostly those at a distance (distal) from the spine. Common first symptoms will involve the Hands and feet.

Only the nerves covered by Myelin (sensory and motor).

Myelin helps to protect nerves and speeds up the nerve impulse.

Pressure Palsy. – Focal Demyelination

Pressure (mechanical trauma) damages the myelin and the nerve impulses are slowed and sometimes blocked at the injury site.

Mechanical trauma can be pressure, stretch, traction, and from repetitive movement.

After injury nerve repair and myelin regrowth is inhibited/faulty. It becomes uncompacted and more prone to injury. HNPP is a demyelinating neuropathy.

What Causes This To Happen

HNPP is a genetic disorder. The main gene involved is one that makes Peripheral Myelin Protein (PMP-22).

Normally two copies of this gene are needed. With HNPP there will be only one copy of this gene.

This is called Under-Expression of the peripheral myelin protein.

This is the same region that is duplicate in CMT1A, in which PMP22 over-expression is responsible for the neuropathy.

How Is It Inherited

PMP-22 is located on the short arm of Chromosome 17.

There are two copies of each chromosome, one inherited from the father and one inherited from the mother.

Each chromosome 17 has one copy of the PMP-22 gene.

In HNPP the affected parent will have one of their chromosome 17’s with PMP-22 missing (Deletion).

A child will have a 50% chance of inheriting this PMP-22 deleted Chromosome 17.

Both males and Females are equally affected.

Is There A Cure

At present there is no cure. Genetic research (Gene therapy and Stem Cell research) may lead to a cure at some time in the future. Other novel approaches are being researched to find ways of arresting the demyelination. Some possible targets for potential treatment for CMT1A may also be appropriate for HNPP, there is also the possibility that a negative effect might occur.

Common Problems

The age of onset of problems can vary from Birth to old age. Most commonly, problems will surface during the second decade of life. Some people are only very mildly affected. Progression can be variable, most people will experience some problems beyond those of aging, a smaller number will experience a moderate decrease in mobility, and some difficulties with daily living.

Foot Drop – Foot muscle weakness/palsy, causing the foot to drag. Ankle sprains, and difficulty walking can occur.

Weakness of grip and loss of hand function – Difficulty with fine hand control (e.g. writing), and loss of overall strength.

A list of common problems (from HNPP.org by M. Horton)

  • crossing legs at the knee
  • leaning on elbows
  • sitting with legs crossed, tailor style
  • sitting slightly askew in a chair
  • sitting on a something (chair, step, stool) with legs out so there is pressure on the back of the thigh
  • sitting in one position too long without readjusting
  • kneeling
  • gardening
  • carrying anything by the handle (purse, suitcase, camera case). Loaded plastic grocery bags are among the worst
  • using scissors
  • knitting
  • working with hand power tools
  • holding the telephone in one position too long
  • tying shoes too tight or tight shoe straps
  • high heels can make toes numb (even 1 inch)
  • painting too long (holding brush or roller) or painting above head
  • walking too long (more than an hour – time varies)- advanced HNPP
  • lifting weights
  • using a mouse at the computer
  • typing
  • any activity on hands and knees

As the illness progresses – more generalised leg and arm weakness. Neck and shoulder problems. Secondary muscle sprains and joint problems. Back pain, through muscle imbalance possibly causing the involvement of the nerves to the muscles of the trunk.

Tiredness and fatigue can occur with sleeping difficulties.

Pain is frequently reported, anecdotally. Many physicians are adamant that pressure palsies are painless. This maybe so for a single pressure palsy occurring in isolation, but after repeated and multiple incidence, pain can become a feature, possibly though the inclusion of secondary pain due to muscle imbalances, and further physical injury.

Treatment and Management

As HNPP is very slowly progressive, and is a demyelinating condition, most treatment is aimed at managing the longer term problems.

These include:

Pain Management – Medications, Counselling.

Occupational Therapy – Work and Home Adaptations, e.g. Kitchen aids, pressure relieving aids.

Orthotic devices – To help with mobility caused by foot problems. Wrist and arm splints/support.

Physical Therapy – To help maintain mobility. A therapist with a particular interest in Neuromuscular conditions would be ideal.

Surgery – Surgery is sometimes offered for Nerve entrapment release. It is not generally thought to be that effective, any benefits being short-lived. However, individual differences, require detailed assessment. Open Surgery has been suggested rather than Key-hole.

Positioning during Long periods of anaesthesia is quite important, to minimise the risk of position induced palsies.

75 thoughts on “About HNPP

    • Hi Eleanor, the HNPP.org website is truly a mine of information, too much in someways, but nearly every aspect of HNPP is covered. I tried to write a short explanation to complement Maureen Horton’s website, I had hoped to be able to get it all on one page, but didn’t succeed. Perhaps I will have another go at it at sometime. Anyway, I’m pleased that you have found it useful.

  1. I’m still quite active (at 59) but I have almost all of these symptoms. I’m careful to back off, whenever I start to feel the numbness coming on. Both my father and daughter have these symptoms. I have a few questions:

    1. Is there any point in getting this officially diagnosed?
    2. Would getting diagnosed help me get effective treatment . . . . or would it just make it hard for me, if I had to change health insurance?
    3. Is physical therapy helpful?

    I’d really appreciate any advice you can offer!

    • Hi Robin,
      It might be helpful to get an official diagnosis, although it is probably for peace of mind only, there is little in the way of treatment, and it may affect your ability to get health insurance, and possibly affect others in your family too. It shouldn’t be that way, but without an effective cure then the only choice is to try and find ways to manage and live with the problems. After saying all that, actually having an official diagnosis can help in that respect, but it is neccessary to be strong and assertive about the treatment that you require.
      In the UK, once we are diagnosed, in fact before we are diagnosed, we see a genetic counsellor, who tries to go through all the implications of having a genetic disease, the choice whether we are tested is still ours, but there is the support available once we are within the process.
      My counsellors were very reluctant to test my children. My son was the person who was first referred to the specialist, but because I had also expereinced the same problems it was suggested that I was tested, and if positive then my son could assume he had the disease without having the stigma off having a genetic test. I had a long term illness before diagnosis so the genetic test didn’t really have that many implications for me, so I was willing to be tested. That said, my son was tested at a later date because a neurologist didin’t believe that we had any problems. it was unnecceasry, but my son was over 18 by that time and didn’t object to be tested. In fact I think he wanted confirmation. It hasn’t really affected his ability to obtain insurance so far, ie house insurance and car insurance, living in the UK our health care is state funded so he hasn’t required health insurance. That said he may actually have some private cover from his current employers. As HNPP is fairly rare, and relatively ‘mild’, many insurance companies (in the UK) do not really know that much about it. In that respect the ‘mild’ tag for HNPP is currently working in our favour. But I would imagine that could change depending on individual circumstances.

      As for physical therapy. It can help, as long as the outcome is realistic. They can’t cure the problems, but they can help us to manage them. It is definitely worth trying.

      I hope that’s helpful to you in some way.

      • Hi leaf27. I was diagnosed over 10 yrs ago but am now struggling with symptoms bevcoming more severe. I can’t find anyone else in UK with it and would like some contact with anyone else with HNPP. Thanks

      • Hi Jacquie, being quite rare means we hardly ever see anyone else with HNPP except our own family. It makes life quite difficult and it is very isolating. However, we are lucky these days with the internet, which at least allows some level of communication.
        If you are on Facebook, there are a few groups for HNPP,
        HNPP_HELP
        Hereditary Neuropathy and CMT

        There is also a Yahoo email group, which has been running for 16 years or more, but has lost some impetus since the advent of facebook.
        Yahoo group for HNPP
        Also a rather less used UK group, (I am the group owner, so I must make of an effort to get it running again…)
        HNPP_UK yahoo email group

        It would be so good if there was a way to meet up in the UK. If we had an official support group, we could have regular meetings. But again the main problem is the relative rarity of the disease, there are just not that many of us in the UK.

        One good way to meet others similar problems is to get involved with the CMT UK support group. They hold an annual conference, and have regular regional informal meetings. If you contact them they will be able to direct you to a suitable group.

        CMT UK

        You can also contact them via phone or letter,
        CMT United Kingdom

        98 Broadway
        Southbourne
        Bournemouth
        BH6 4EH
        UK

        or FREEPOST CMT UNITED KINGDOM

        Freephone: 0800 6526316
        Tel: 01202 432048
        Text: 07520 678902
        Email: info@cmtuk.org.uk

        I have contact information with them, but it is out of date, and the telephone number given (freephone) is not linked to my current number. I must get around to informing them of this change, which I have done on several occasions but the message doesn’t seem to get through.

        One other way you might be able to meet up with others, is to contact the Muscular Dystrophy Campaign (MDC). Although Muscular Dystrophy is very different from HNPP, the group do support both CMT and HNPP, they often use the term HMSN (hereditary motor sensory neuropathy) to refer to both these conditions.
        Historically MDC used to have Care Advisors linked to various regional Neuromuscular centres. But things have changed a little over the years and some regional neuromuscular groups (networks) are NHS run some as a collaboration between NHS and MDC.

        MDC – Getting the right Help

  2. Good information thank you! Have looked into receiving massage therapy as a compliment to the pain management? I have been in a licensed massage professional for 5 years and my heart goes out to my clients that are forced to tolerate an uncomfortable daily lifestyle with little they can do to ease their discomfort. I have worked with Fibromyalgia clients, people with pinched nerves, clients who are seeking a healthy alternative to their pain meds, and many others. I recently started recommending these concentrated herbs, that are supported by published medical research highlighting their anti-aging properties as 1Million times more significant in the body than any amount of antioxidants a person could consume in a day. Their are currently seven published clinical trials on the potential benefits of these herbs and what can be expected from them with the research gathered thus far. Having clients on them most recently has truly brought excitement in my practice especially to those who have been forced to tolerate body pain for so long. If you would like to read more about the research and ingredients of these medicinal herbs you can visit my website at
    http://www.imassage.massagetherapy.com/new-protandim-herbal-supplement-

    Wish you the best of luck!

    Warmly,
    Vanessa Marquez
    LMP, iMassage,LLC

    • Hi – the site you recommended has expired. Could you please let me know the products which you have suggested could help?

      Thanks

      • Which Website is that Hugo? If it’s HNPP.org then we’ll just have to hope some friendly neurologists with an interest in HNPP puts their name to support and information. Not much we can do without a professional advocate. Write to Dr. Mary Reilly may be worth trying.

  3. hello i have HNPP and I’m 18 I have been in a wheelchair starting in grade 8 so I was 13 I went to doctors for years before i was in a chair i was always falling and couldn’t feel (numbness) or I was in sever pain, does anyone know know of a case like this? the doctors found out about HNPP 3 1/2 years ago and I’m just getting worse. As you may know HNPP is not known of many people including doctors so their having a hard time with funding in canada. please contact me if you have any anwsers.
    thank you

    • Hi Kayla, I have heard similar stories to yours, it doesn’t happen often, but then again our teenage years are often ones of great change, and most people with HNPP do tend to have troublesome symptoms at this time. If you join up with one of the HNPP groups you might be able to chat with others who have experienced similar problems. There are a few. The yahoo groups have been running for a long time and there is a large archive of posts going back 12 years or so. The Facebook groups are newer, there are both open and closed groups, both of which are useful in their own ways.
      Here’s a few of the links to the groups
      HNPP Yahoo group
      Facebook _ public group
      The private (closed) group on face book can be joined by emailing Laura at this email address hnpphelp@groups.facebook.com
      Jon

      • hello I was wondering if you know any doctors whom have delt with sever cases like mine?

      • Hi Kayla, sorry but I don’t know of any Doctors in Canada. My only sugestion would be to try talking with the CMT and Muscular dystrophy organisations there. Although HNPP and CMT are not Muscular Dystrophies, the MD organisations often support other neuromuscular diseases and include CMT and HNPP in their remit. They should know of the best Doctors for neuromuscular diseases, so I would say that this is a good starting point in trying to find a knowledgable Doctor.
        According to this list they do support HNPP,
        MDCanada

  4. Hi my 15 year old daughter has just been diagnosed with HNPP and we are to have genetic counselling as a family my daughters started with wrist drop which is recovering albeit very slowly , any information will be truly appreciated as searching the internet brings up so much information you just dont know where to start.

    • Hi AnneMarie, What country do you live in?
      One of the best places for information is the Hnpp.org website. There is a lot of information there, and it can take quite a while to take it all in. The website was written by a registered nurse in the US who has HNPP and all information was checked and verified by a neurologist with a specialist interest in HNPP, Dr. Gareth Parry. Here is an interview with Dr. Parry with many questions about HNPP,
      Interview with dr. Parry on HNPP.org
      On the whole HNPP is supported by CMT groups in many different countries. HNPP differs from CMT in some aspects but shares common genetic links and some clinical features with CMT type 1A.
      Another source of support are the Muscular Dystrophy groups, such as the MDA in the US, and the MDC in the UK. Although Muscular dystrophy is very different to HNPP and CMT, these groups often support other neuromuscular diseases, including CMT and HNPP. As they are often well established groups with good links with the medical profession, they can often offer substantial support and information, nationally and regionally. To help manage HNPP it is helpful to get to know the support network in your area.
      Here are a few links which maybe useful,
      hnpp.org
      CMT UK
      Regional Care Advisors MDC UK
      HNPP info at CMTaUSA

      As well as these formal groups there are several informal groups on various social media websites. The facebook groups are quite popular with a worldwide membeship.
      HNPP can be managed quite effectively, but the problems it presents need to be recognised before they can be managed and this is often the greatest challenge. I am not a particularly good example of good management, I was diagnoed at 41, and by that time I had acquired various other health problems. HNPP is quite reactive to the environment and that probably includes other illnesses and their effects. It is also possible that it will be misdiagnosed, which can cause much confusion and poor treatment.

      I hope this helps a little, please feel free to ask further questions.
      regards, jon L

  5. Hi Jon and thank you so much for the information We live in Lancashire the home of sunshine ha ha. My concerns for my daughter are managing this condition effectively and recognising the signs as this has came completely out of the blue, we also have a 2 year old daughter and have been advised to have her tested too so its been a bit of a shock for us and it’s a lot to take in at the moment although saying that my 15 year old has taken it very well and is coping well at the moment she is starting to show some sign of recovery and hopefully this will continue. I think it would be helpful for my daughter to have some one her own age who is in the same situation as her so that she has support outside of our family and friends.Once again thank you for your help it is very much appreciated take care Annemarie

    • Hi Annemarie,
      Perhaps the facebook groups would be helpful, there are quite a few people in the Lancashire area, some with younger family members. Of all the informal groups facebook does seem to have more young people contributing.
      CMT UK have a young persons group, and they often arrange outing and meeting, as well as activity weekends and holidays. Karen Butcher is the secretary and will have all the info with regard to the young persons groups. She is very approachable and easy to talk to, CMT Helpline
      I think there is a very active regional group in Lancashire.
      bfn,
      jon

    • Hi I have just had my children tested at Alder Hey hospital in Liverpool with Dr Stipton who has done lectures etc and seems very knowledgable about HNPP, my children are 6,9 & 14 and 2 of them have symptoms.
      We live between Liverpool and Manchester and have found very little help out there….
      Good luck and take care xx

      • Hi Alison, good to hear you’ve found a good doctor/neurologist. I’ve heard a lot of good reports about the Walton centre in Liverpool, so it seems quite a good area to be in. I’m waiting to see a neurologist, I haven’t seen one for 5 or 6 years. I’ve gone through the local neuromuscular network to ask for the referral, so I’m hoping i’ll see someone with a good understanding of HNPP.

    • Hi Annemarie. My name is Bethany. My daughter is 13 and was just diagnosed with HNPP today. We had a feeling that would be what it was. She started with wrist drop, too. It is very very slowly coming back. She couldn’t use the muscles in her wrist or tricep for 2 months. My sister started having nerve problems in her early 30’s about 3 years ago and was told it was probably HNPP, although she never had the blood test. She had nerve conduction studies done after losing the use of her leg from the knee down for 9 months. It slowly recovered. Now we know that must be her diagnosis as well. I read that you think it would be helpful for your daughter to have someone her age who is in the same situation. I agree. Perhaps your daughter and mine could communicate. We are in the U.S. If you’d like to message me perhaps we could set something up for them to email. I will check back here to see if you got this post before I post my email here.

  6. thank you so much for all your help, you are the only person i have spoke to about this so far. me and my family really appreciate it good luck to you and once again a huge thank you from all of us

  7. Hi, I also have HNPP and have 3 children two of which have been also diagnosed as having HNPP (15 year old boy & 12 year old girl), I believe Jon will be passing my email address to you both.

  8. I have HNPP, in my hands, it started in the right hand then in the left. My left hand is worse, I have wasting away of muscles in my hand & it it numb to the elbow. & very very painful at times. I am due for an operation soon ( I hope) I cannor open Jars or bottle likds, I cant hold tablets in my hands, they just fall off, I love to do crafts & am finding that more difficult. I just hope the operation can help
    Karen

    • Good luck with the operation, some people have had good success with surgical procedures.
      I remember my geneticist telling us (my son and I) to keep up with guitar playing as that is probably good for dexterity and good hand exercise. It’s not that easy when hand are numb and muscles don’t want to work, but I have found the old habits have lasted longest.
      I haven’t kept this blog updated of late, but you might like to check out the links to the yahoo and facebook groups, they are quite active.

  9. I am having regular theraputic massage to help keep me flexible but I don’t know whether deep tissue massage could acclerate demylenation.

    Any idea how I can find out…there seems to be so little inforamtion for peopel whose symptoms are severe

  10. Hi Lynne, it’s difficult to say for sure. I guess I would feel wary about it, anything that involves excessive pressure could cause a sudden worsening of a palsy or invoke one. But with many things, it is often a case of try it and see. As long as the therapist is willing to listen to you and accepts that when you say enough that you really mean it, and that you want them to stop whatever they are doing, then it might be worth exploring.
    If you feel any worsening of symptoms or the develpment of something new then it would be worth stopping, or modifying the treatments.
    I suppose it depends on how much you trust your therapist.
    Sometimes it’s worth taking the risk.

  11. Have resently started having shortness of breath. Have been tested for all sorts, but all come back normal, so I have attributed this to my HNPP. Just wondering if anyone has figured out what relationships there are between HNPP and breathlessness as I have not been able to find anything on the web, even if it is mentioned as part of symphtoms.

    • Hi Pete,
      Often the main focus on breathing problems and HMSN in general is on Diaphragmatic weakness caused by nerve conduction anomalies of the Phrenic nerve. In CMT it is said to be quite rare, as CMT is predominantly length dependent, ie it affects the longest nerves first, the legs then later the hands, then as it progresses the shorter nerves which can include the phrenic nerve. This is said to be quite rare.
      The situation with HNPP is slightly different, although there is a length dependent element to HNPP, it is not the main factor. HNPP makes the nerves very susecptible to trauma and this makes it very dependent on environmental factors, which include other physical illnesses and impairments. It is not at all length depnedent and more susceptible to focal injury which in the case of HNPP can be quite trivial.
      Other muscle and nerves are important for good respiration, maybe less so than the phrenic/diaphragm, but nevertheless very much a part of the overall ability to breathe effectively.
      It is worth looking at the accessory muscles of respiration, which include the intercostal muscles (ribs muscles) and the muscles of the upper chest and shoulder. These can be affected in HNPP, and whilst it is not often reported due to ascertainment bias of the investigating doctor, it is nevertheless very compatible with the anatomy and physiology of HNPP, ie focal nerve involvement due to increased susceptibility to nerve demyelination by rather trivial trauma.
      shoulder and upper arm involvement, intercostal muscle and any problems with shoulder blades / scapular winging and involvement of the long thoracic nerve, might be contributary to breathing problems. These can be exacerbated by other respiratory problems which on their own may not be that serious.
      I’ll post some references to these problems later… (my hands need a rest from typing…)

    • Hi Pete! I am very happy someone would prove that my suspicion of the breathlessness being connected to HNPP is not me going crazy! Just about two years ago, when I still had no tiniest clue I might be walking with a time bomb – the HNPP, I suffered with chest infection that did not want to clear off and three weeks once it begun I developed breathlessness attacks which left me either loosing any function in my body and extremely exhausted on the verge of passing out, or either made me very stiff in my hands and feet. Every time I went into this and paramedics/A&E/GP saw me I was accused of stressing over something, exaggerating/faking and being mentally unstable. I was so sick of hearing all that and seeing their suggestive looks! Year later I was finally diagnosed with sinus tachycardia which was a trigger of my breathlessness. Since I was put on beta-blockers I had been well. In August this year, after referral from neurosurgeon (who thought I am pain in the butt complaining about bad pains after lumbar spine surgery) for ECG and Nerve Conduction Study that came back abnormal in all limbs, suggestion of HNPP was made and I got refereed to Neurology Clinic. Blood tests shorty confirmed that in fact I have HNPP. Recently I started getting very bad dizziness to the point I feel the ground is moving; when I watch TV and there is more of rapid camera movement I get dizziness too. My right side of the body got badly affected one day in October, however my leg recovered very fast but my hand was weaker for longer and right side of my face dropped visibly. This incident is still being investigated but TIA is more of a suspect than HNPP in this regard. However, since the incident my right side of the body which until then was rather well (if comparing to constant partial numbness in my left leg and coming and going away numbness and discomfort in my left arm and hand) started to play-up since. the leg is not rally an issue but the hand is very much. I am struggling to open a bottle, make a fine movements, I can see how differently I use it when I hold myself to something or try to manipulate it while doing some more specific tasks. It gets numbed and very heavy on its own, not only when I use it. Sometimes they both go off together but usually is one at a time. I now understand that I suffered from HNPP all my life and always had symptoms but I never thought about it. I simply thought everybody goes through same symptoms but no one speaks about it as it is so normal (!?). I had left foot drop when I was little but it went away however I always had very strange feeling on the top of it but since I was able to move it without any problems, no one wanted to believe me. So I thought to myself – it must be more in my head! I was able to dance, to climb mountains, walk long distances, walk fast – always was a very fast walker; was always very energetic and extremely flexible in my whole body. I thought about myself that I am exceptionally healthy being and considered myself very lucky! It was like that until the fatal day, when I developed chest infection and the rest is a history… 😦
      If anyone would like to contact me, please use my e-mail address: jolanta.ch@live.co.uk

  12. Thank Jon. Yep, think you have diagnosed it. No problem (I can detect) in ribcage, arms, shoulders. So it leans towards diaphragm. I had a kidney stone blasted by sound 2 weeks ago. No problem inside first week, so it was not direct related to that. But perhaps weekened the myelen sheet and so something trivial was enough to cause what is now happening. Can only wait and see if gets better. Had a w/e with some serious beer drinking and up to 6am. So I think this is my main cause. Self inflicted. The expansion of the gut as a result of many beers might have stretched the nerves… Might be time to keep the beers to 2/session…

  13. Thanks for this. I was just diagnosed yesterday with hnpp, it’s more advanced then I expected it to be. Your article here is the most comprehensive I’ve read thus far.

  14. Hi Pete… I was diagnosed with HNPP over 2 years ago now and have all the usual symptoms but I have found myself short of breath lately and just tried to find out if anyone else with HNPP has found this connected or not and your post came up….I am 45 but the interesting thing is my son who is 24 yrs of age and I think shows many signs of HNPP has also been experiencing shortness of breath but he doesn’t want to face any of it at all and brushes it off….both my brothers and son have exaggerated rib cages and shoulder blades which I think my mum Used to say was like a ‘pigeon’ chest thing but I wonder if it’s a case of our body shape and perhaps the HNPP together may make us more susceptible to problems in this area ???? anyway just wondered if you’d had any light shed on this since your last post πŸ™‚

  15. Hi Julie

    I do not have a “pigeon” chest. I am slim but have relatively wide sholders. Regarding development about my shortness of breath: Initially I had no help from doctors, and I was thinking it was probably related to HNPP and something I would have to learn to live with. I do walking for fitness and even if I am far from as fit as when young (now 57) I had always had a “base” fitness. I have never smoked. In May 2012 my breathlessness suddenly became much worse and I could only walk approx 50 meters before I had to sit down. I ended up in hospital emergency ward. There I was told that I had a huge cloth on each lunge and I should not be alive… I was put on anti-coagulent medication. Inside a month I was back to the pre emergency state where I was short of breath but able to function.

    Since then I have had tests done of my abnominal muscles and their capability to work on my lunges. My inhaling is 200% of normal capacity. My exhaling is 98% of normal capacity. This means that my ab-muscles are doing a brillinat job with my lunges. (I was concerned that HNPP had made my ab-muscles weak, but clearly this is not the case).

    The cloths on the lunges are not considered to have any relation to my HNPP (according to doctors). I now take Warfarin to stop more cloths from forming and to slowly dissolve the ones still in my lunges. It is expected this will take up to 2 years as much of the fine network of blood vessels (where the oxygen is transferred in to the blood) was totally blocked.

    The way it looks I will be on Warfarin for rest of my life. I am monitored and tests are done approx every 4 – 6 months to follow the development.

    Nobody can explain why I had these cloths on my lunges, but doctors seem to be happy with what is in place to prevent same thing to happen, and they feel confident the cloths will fully disappear over time.

    If you ask my opinion I think there is a relationship between the HNPP and the cloths. I do not know how, but I feel confident this is the case. I wish I had been taken seriously when I started to complain about shortness of breath and the tests would have then been done as I think some of the major issues would have been avoided.

    So to conclude:
    – I had big cloths on both lunges.
    – The cloths are treated with Warfarin (I take medication daily)
    – After the initial success of getting me out of the hospital the progess has slowed down.
    – I think there is a relationship between my HNPP and the shortness of breath/cloths, but doctors are not hearing me.
    – Please ask for tests to be done on your lunges to determine if your oxygen uptake is as it should be, and also ask for a scan of your lunges (they inject dye in to your blood to be able to see) to find out what state your blood vessels in your lunges are in.

    If I can help you in any other way, please just ask.

    All the best
    Pete

  16. Hi Pete,

    Thank you so very much for your very interesting and detailed reply, I really appreciate that you have taken the time.
    Well the first thing that strikes me about your reply is that my Mum was on Walphrin for all the time I can remember growing up as she suffered blood clots from the early age of 36… She had several strokes over her life time and then many small episodes as she got older. I’m not saying that its a certain connection to the Hnpp as unfortunately my mum was never tested for Hnpp and sadly past away nearly two years ago now but she suffered so many of the symptoms I read of in both Hnpp and cmt patients … Foot drop, shoulder drop, weakness in the hand and arms, tinnitus and deafness she required a wheelchair in the last few years of her life but I’ll never really know if I’ve inherited it from my mothers family as there is no-one else who has had the genetic test. But it does all make me think that it may just be another piece to the very complex Hnpp puzzle !!??
    I’m so glad they have been able to identify and treat yours , it must of been a real shock and very frightening…. I must admit mine is not bad more like an nagging feeling that I know I’m having to try just a little bit harder than normal to to get my breath then every now and then as if I need to take a real deep breath to compensate.
    Thank you for your advise… I think it is good to hear stories such as yours as even if mine is nothing I think I’m a little less likely to brush it off when there is a possibility it could turn out to be something as serious as yours turned out to be.
    All the very best to you Pete and thank you once again.
    Kind regards
    Julie

  17. Hi Julie

    My HNPP syptoms are mild in comparison with other ones I have read about. I have Tinnitus, I have weakness in hands, and I have a left foot drop as a result of nerves caught in a vertabrae that has moved inwards. As a result I have problems running, but I am able to walk well. I have resorted to wearing lace up mountain boots that work well for me. The shortness of breath was my biggest worry. As it seems, my diaphragm is working well therefore ruling out the “normal” HNPP cause of shortness of breath. As mentioned in the earlier post, I suspect that my problem is related to HNPP. I do not know how, but it is the only thing that makes sense as specialists can not determine how I got the big blood cloths on my lunges, and I have never before had a problem with cloths anywhere (or shortness of breath) Warfarin should prevent any more cloths forming and hopefully reduce the current ones over time. If that is the price I have to pay I can live with that.

    Yes, I do recommend you have your lunge function tested. For close to a year I had the small shortness of breath that I also considered a nuisense but nothing else. In hindsight I wish I had been more demanding re getting it fully tested instead of waiting until I got hospitalised.

    Take Care
    Pete

    • Hi Pete, Julie,
      It is so important to have things checked out thoroughly, it is so easy for doctors (and us) to assume that things are either HNPP or not HNPP before any testing has been carried out. Even then it is sometimes inconclusive.

      I’ve recently been diagnosed as having had a small stroke, (lacunar infarct) and as a consequence have had to start taking blood thinners (or anti-platelet drugs not sure of the difference, must look it up….) I find it slightly worrying as my mother had many lacunar infarcts, eventhough we weren’t aware of her having had a stroke, she also often complained of heart arrythmias but often these were passed off as being due to anxiety (she wasn’t an overly anxious person though). In her later years she had dementia. I don’t know whether she had HNPP or not, I suspect so but she was never tested, or had any long term palsies.

      I doubt whether this has anything to do with HNPP, but then I cannot be 100% sure about that, HNPP or persistent palsies may affect other bodily functions, poor mobility, lack of muscular tone, and this may aggravate other bodily functions especially if other disease is involved too.

      It all points to us having good yearly checkups, not just for hnpp, without ant preconceptions from the examining doctors about what HNPP is or is not.

      I have also had many lung function tests. I had to fight tooth and nail to get them, my breathlessness was put down to being either smoke damage (now an ex-smoker) or something else but the neurologists were adamant it wasn’t HNPP. Tests revealed asthma and COPD but also some level of neuromuscular weakness with breathing muscles. I think the neurologists are still of the opinion that this isn’t due to HNPP, althouth my pulmonary doc thought it was. My concern is that although it was mild on that test, I know what palsies can be like, very mild to sudden outright temporary paralysis, and if its like that for my feet and hands, could it not be the same for the diaphragm or other respiratory muscles. Testing and recording that is going to be almost impossible. I can treat the copd and asthma to some extent, so that is one good thing.

  18. Hi Leaf27

    Thank you for your input. I was almost certain that my shortness of breath was as a result of my HNPP having affected my diaphragm muscles. As it turns out that was not the case. It was blood cloths on both lunges that affected the small blood vessels that transfer oxygen in to my blood. My lung capacity is fine. I am, as erlier mentioned, now on anti-coagulents (Warfarin) that (depending on how much I take) reduces or stop my blood from being able to coagulate (If I cut my self it now takes longer for me to stop bleeding, Warfarin is also an rat-poison where the rats eat so much Warfarin that they bleed to death internally…).

    The interesting thing here is that it seems like I am not the only one with HNPP that has shortness of breath and has been described anti-coagulents. I have found out that HNPP is causing Tinnitus, but doctors, in many cases, do not agree. Is this blood cloth issue another of HNPP’s effects on us that doctors do not agree on??

    Pete

    • Hi Pete,
      My breathlessness doesn’t appear to be related to blood clots. A few years ago I had an episode of extreme chest pain, actually not just chest pain, but it seemed to start in the centre of my back, and affect the ability of rib movement, arm movement (left sided) and was so painful that I couldn’t move, ie twist, bend, sit, stand or walk without extreme pain, far beyond anything I’ve ever expereinced before. After trying to cope with it by resting and minimising movement, I eventually called the emergency doctors/nurses at the UK’s nhs-direct. They sent an ambulance and whisked me off to hospital, where all tests for heart disease and pulmonary embolism (blood clots on the lung) were negative. Eventually they agreed that it could be due to thoracic (chest) nerve pain, a pinched rib nerve root somewhere near my spine.

      The anti-platelet drugs I’m taking prevent blood from forming clots, and this is given as a precautionary measure. I do have some signs of cardio-vascular disease, most notably (easily seen) venous eczema on my lower legs. So it could be that pulmonary embolism (lung clots) will be a problem at some point.

      The mild stroke I’ve had could be due to clots, but that would more likely be clots formed in the heart, due to irregular heart beat, or somewhere between the heart and the brain. However, my cholesterol levels are fairly normal so would seem to rule out blood vessel narrowing due to that. Or it could be due to other unknown factors, possibly a small bleed in the brain or some other as yet unknown brain blood vessel disease. My lung disease will have a negative effect on my heart and circulation which is unlikely to be related to HNPP.

      I have too many other physical problems these days, for me to be able to say anything is related to HNPP or not, there are just too many variables. This is one reason that I have stopped blogging so often about HNPP. I can no longer say for certain that a problem is HNPP or not. There was a time when things were much clearer, but aging doesn’t come without it’s problems, and I was quite reckless with my health when I was younger, perhaps I’m paying the price for that nowadays. I don’t have many regrets (lol, now I’m begining to sound like Frank Sinatra…)
      Cheers for now,
      Jon

  19. Hi Jon,
    I find your posts really interesting so I hope you don’t stop blogging….you seem to have such a knowledge of HNPP and you put it across in such an understandable way and with so little to go on at times it really is good to have that πŸ™‚ I would be interested to know how much HNPP effects the vascular or visa versa as in my case personally the foot that is very weak and shows signs of foot drop also has extremely poor circulation and very bad viens… I’ve had them stripped in this leg but it hasn’t improved the situation really…. I just wonder how much maybe connected or if in fact it’s just bad luck to have the two conditions. As you said as we age there are so many other things that may play a part but I feel at just 45 years of age I’m dealing with elements I thought would be a little further off yet lol… Anyway I know full well after reading so many other posts I could be a lot worse off and for that I’m truly thankful.
    All the best Jon
    Kind regards, Julie.

  20. Thanks Julie, I’m not giving up but I haven’t written a post for quite a long time. It’s good that people are commenting though. Gives the blog an interactive feel.
    I don’t feel too well today, I seem to have some kind of viral infection, it’s not a cold, and I doubt whether it’s flu as I have yearly flu vaccinations, But whatever it is has really wiped me out today. Lots of nervey aches and pains, headache, dizziness and slight fever… odd.
    I’ve slept a lot today too.
    Cheers again,

    Jon

  21. Hi I just wanted to ask a question….My brother in law runs for charities each year and asked me whether he could donate to HNPP charity…can anyone point me in the right direction?

    • Hi Alison, I don’t know of one specifically for HNPP. There are the CMT groups, CMT UK gives some support to HNPP. Another group who might be worth supporting is the Muscular Dystrophy Campaign (MDC), and although they have no specific info on HNPP their support Care adisors often run regional support groups which include HNPP as one of the 40 or so related neuromuscular conditions.
      The MDC could be considered an umbrella org for other smaller neuromuscular charities, CMTUK being one of them.
      If donating to CMTUK or MDC, it might be a good idea to push for greater HNPP recogntion/awareness at the same time.

  22. I have hnpp, I definitely have pain, cramping and deep aching in my upper back and shoulders (periodically lasting 2 months at a time) along with tender points. I find that a Novasonic is amazing for the pain, it takes a week but then it is so much better. I dont have any cure for the numbness, tingling, facial parathesis, carpal tunnel etc etc etc that I have to put up with though! I also get bad GERD too.

  23. Hi all, had a recent annual visit to my neuro basically asked what had happened over the last 12 months……then said”see you same time next year!”….hello haven’t you heard me just say, I am in pain, problems walking etc etc can you help? Even when I asked about the poor vision he typed into the computer and came up with 2 noted cases of HNPP affecting the optic nerve then said its too rare a symptom so it probably isn’t the HNPP that has caused me to attend the Low Vision unit for help with night driving….he got me so wound up, I really could have screamed at him to try being me for a day and see actually what is happening instead of being paid a good salary to take notes nod and and occasionally um and erm…. Apologies for the rant…hope everyone is in fair spirits, keep going guys,love to all xxx

  24. My concern, I have generalized dystonia and disorders from this but I think I also have HNPP in the trunk of my body and they think it is affecting my speech as well. I have advanced dysphagia already, they think I am losing my voice from this as well and I was wondering if anyone else is having this problem. Plus I get the same HNPP feeling in the trunk of my body, when I wake up it is tingling as well, not just my arms and legs. My feet do flop, it’s hard for me to wear flat shoes.

    • Hi Loretta, try contacting the facebook groups, you will find many there with similar problems, ie trying to cope with more than one condition. I’m not sure if there’s anyone else with dystonia or not.
      Most treatment is based on prevention of palsies, either by changing routines and habits, or by splinting and physiotherapy.
      I don’t know of any medical treatments as such, other than pain relieving medications and muscle relaxants, which are sometimes used.

  25. I was told not to look for a cure all they can do is help me with my pain and treat the dystonia. They checked and saw I had this for over 20 years, same with the dystonia. The tests show I have both!!!! They said it is very RARE. Rare to have both as well. I don’t know what to think about this all or what to do about it or if there are treatments for HNPP.

  26. I have lived with HNPP for about 10 years now and I have done wonderful!!!! However, within the last week my never has stopped feeding information to my muscles and I am now loseing muscles and my leg is bowing inward. I am currently doing PT three times a week and I hope this really helps. Three weeks ago I had a drop foot and neither one of my parents ever had any problems Doctors really don’t know where this has come from but a nerve biospy told them this is what I have. I take tegretol 1000 mg a day and tramadol for the pain. The tegretol stops me from shaking, without it life would be really hard. Hope this helps people. I am 51 years old!!!!!!

  27. Hi everybody,

    First of all, sorry for my English grammar, I’m French πŸ™‚

    I come from a family with mild HNPP (grand-father, father, uncle, brother). Until now I thought I was off with this neuropathy as I’m 42 with no symptoms. But my 10-year-old child suddenly has developed 6 weeks before an ulnar claw at his left hand without any reason (we don’t remember anything) and since 1 week he also has an ulnar claw at his right hand. Furthermore, the ulnar nerves are painful for my son. The neurologist told him to wear slings by day and wait for recovery. I’m a bit lost as none of my relatives had symptoms at this early age or had a claw or painful symptoms.

    1) Did one of you already have a claw?
    2) And how long did it take to recover?
    3) What are you tips to sleep without bending the arms? (the neurologist told us not to use a splint as it’s too hard).

    Thank you for your help.

    Maghaly

  28. Hi Maghaly
    I had no symptoms before I turned 50. Well, perhaps minor ones but at the time I did not see them as a problem. And I was not diagnosed before 51.

    I have for 25 years used a water bed. Long before I knew I had HNPP. Cold is apparently increasing the symptoms, but as my bed is always warm this helps. Also the softness of the bed reduces/eliminates issues while sleeping. When I sleep in a “normal” bed I can at times get problems in my arms, but this has never happened when I sleep in the water bed.

    I have not suffered from “a claw” so sorry I can not be at help there.

    Pete

  29. To Loretta:

    Sadly there are currently no cure for HNPP. At times you can have an episode without knowing why as you have done nothing different to normal. By reading all I have been able to find re HNPP and by trial and error I have the following in place for my self:
    – Don’t get too drunk, as the chance of sleeping in an awkward position is much bigger causing issues for the nerves and bringing on an episode of HNPP
    – Don’t overdo anything. I now take small breaks when I am cleaning, working with machinery, in fact in most things I do.
    – I “listen” to my body. As soon as I feel uncomfortable somewhere I will change what I do.
    – I do low impact exercise to stay fit and uphold muscle tone. (Love my cross-trainer!)
    – If standing or sitting I will change position often.

    Pete

  30. Thank you for this blog- very helpful and informative.
    I have been to the neurologist today and he is extremely confident I have HNPP and has sent off the blood test today. My granddad has nerve problems which have not propely been diagnosed (swollen legs, tingling, neck problems and over sensitive to touch in his hands)

    I would usually like to wait until I have a firm diagnosis to ask questions- however I was about to plan a trip from London to America to visit my husband’s family.

    So here are my symptoms:
    Nerve study confirmed trapped nerve in my elbow affected my hands, abnormal borderline trapped nerve in my legs affecting feet . He said he couldn’t conduct other studies but I have also had pins and needles in my: shoulder, thigh, eyelid, up my nose, lip and in my head (behind my ear)
    I know I have a weak leg reflex. I have had for years supposed reynauds which affect my hands and feet.
    Last year I had Bells palsy which paralysed one side of my face (apparantly the doc said this may have been the HNPP)

    I have also had strange sensations in my ear and I swear my vision is not normal- I feel sensitive to bright colours and sometimes get eye strain. Are either of these related?

    I currently have tingling in my hands and feet ALL the time and my temples are so sensitive I feel like I could black out if pressed too hard. the other tinglings come and go- I seem to develop one which may last a week (e.g. eye twitch) then it goes and I get a different one.

    My question really is any advice in the short term? I am a speech and language therapy student doing a full time masters course. I am sure if its not HNPP maybe similar techniques will help.
    Will I be ok to fly? Will I just need to keep moving around?
    I also have had pains in my side (which started as tingling) I now have a upper UTI infection but I am not convinced this is the origination of the problem as it began as pins and needles.

    I hate to sound like I am complaining or listing everything possible. I have also had low platelet count, lymph count and vitamin D, the heamotologist says these are unlikely to link to anything but I know very little about nerve conditions.

    Any help, reassurance or advicw would be particularly helpful. I would please like an opinion on the flight and things i can do to help and then I can tackle anything else when/if I get a firm diagnosis.

    • Sorry to be so late in replying, but I’ve just moved house, which has been quite an upheaval after 26 years in our previous house.
      I think you should be OK flying, but as always with HNPP (or similar) it is a good idea to shift your position from time to time. It is extremely variable and it is so difficult to predict what will happen, even for those who have had problems for years, HNPP can spring surprises. However, after saying that there are several people on the HNPP facebook and yahoo groups who travel long haul flights regularly, and they seem to cope quite well with it all.
      long-term palsies caused by HNPP can occur but for me at least they have been quite few and far between, and mostly I have had good recovery from them, a little less so now I’m in my mid 50s but overall HNPP has mostly caused many episodes of short-term palsies, and often mostly sensory types, or with only slight muscle weakness. They can still be troublesome and difficult to manage but they do seem to resolve, at least for a while until they next occur. I am noticing more difficulty but other health problems are not helping, by which I mean that my general level of health is pretty poor and that doesn’t help the recovery process of any palsies I develop.
      Living with HNPP is often a balance between not letting it affect your life, your work, your hobbies etc, whilst taking note and care when palsies do occur.
      Having good help from a neurologist who is aware of the problems HNPP ( not easy to find, they have a tendency to trivialise these problems, and whilst in the greater scheme of things HNPP might be thought of as ‘mild’, the problems can be very real and without good acknowledgement of them, their effective management is made more difficult), help from other therapists is available once the problems are recognised.I have found good help from the various neuromuscular network teams that were originally set up with the help from the Muscular Dystrophy Campaign organisation.

  31. I also realised it is important to mention that I am 24 years old.
    Apart from bells palsy last year I have had no other nerve problems. Just literally woke up with tingling in hands and feet over 3 months ago and they have only got worse since.
    Many thanks and best wishes to all

  32. Sorry for the late reply back. It was so hectic over Christmas and am now in the USA. Thanks you for your help and detailed response. The flight was ok-my legs felt a bit campy for a few days after, even though I stretched. But it was fine overall. I think the worse thing for me is sleeping as any time I bend my elbows I get tingles and then my fingers go numb. It is sometimes hard to eat, type or write but I am managing fine. My university has been very helpful and supportive so far. I have a meeting soon with the disability bursary team.
    So if anyone has any ideas of things that would be helpful. They can provide things like a dictaphone in case I can’t write notes some days. I think I will try to ask for a special pen too.
    Do you get very frustrated with it being trivialized? How severe would you say it is? Does it affect your life much?
    Having 2 trapped nerves and unusual nerves in my legs does not seem that mild to me! Obviously I appreciate too it could be a lot worse.
    My palsies have lasted for 4 months now which according to the online sources is a bit longer than the usual ‘epsiode’. Would you say this is usual from your overall knowledge.?
    How often do you have palsies?
    Any further help would be greatly appreciated πŸ™‚ thank you so much
    Sabrina

  33. Hi, My husband and daughter (15) have HNPP. My daughter has a severe version. Episodes are unpredicatable lasting from a few hours to a couple of years. If it something that has been affected before it is easier to manage eg her left arm has gone a few times. When her right leg went, it was really difficult until we got specially padded sticks, and an AFO. If it is a foot drop she has a boxy ankle brace. She uses specialist easy grip cutlery, a PenAgain pen ( looks wierd, but avoids having to grip), voice activated computer soft ware. She avoids pressure from heavy bags on her shoulders or hands and has learned to listen to her body. She also finds a memory foam mattress topper on her bed is useful.

    Best of luck.

    Sheila

  34. An succinct, factual and insightful description. Thank you for taking the time to post/blog.

    I’ve left my email on this so please keep me informed of any clinical studies etc I might get involved in. I am 31, diagnosed roughly 3 years ago. I miss not being aware of HNPP and remain optimistic and hopeful that medical advances will eradicate, or at least illeviate, the symptoms of HNPP for myself and others. Particularly if and when I come to have children.

    Hugo

  35. After 26 years of chronic sporadic pain in my right groin and 4 years of constant pain in my feet I have been finally diagnosed with hnpp. Great, I thought at last they (all doctors I have dealt with over the decades) understand. How wrong I was. Told no cure and not to cross my legs.! No support in Ireland. Help please

  36. Not sure I remember now.

    I was referred to a UK neurologist who had ‘special interest’ in HNPP/CMT shortly after being diagnosed.

    If the most recent annual check-up was anything to go by she couldn’t have been LESS interested! I’ve heard Dr.R’s name before. I’d be interested to know if anyone had made contact or could provide contact details….

    Best wishes

    Hugo

  37. I have no formal diagnosis but have so many symptoms that are starting to fit the puzzle,I have to have nerve conduction tests ,but so far have loss of feeling in right leg and foot also a lot of pain in the right side of lower body,shooting pains in left lower body,awful back pain,occasional numb fingers,going deaf in left ear on an off but then also being able to hear people whispering,most bizarre!
    What do people take for pain relief ?
    I am 42 and in the UK

    • Hi Vicky. I’m too 42 and in the UK. I live in London. Have been diagnosed with HNPP in August and am still getting my head around it. Feel the progression and sadly quite rapid one. If you would like to talk, and anyone from London/UK, please let me know.

  38. Jolanta on November 18, 2015 at 9:05 pm said:
    I am very happy someone would bring up the issue of breathlessness! This way my suspicion of the breathlessness being connected to HNPP would prove me not going crazy! πŸ˜‰ here is my story… Just about two years ago (Feb 2014), when I still had no tiniest clue I might be walking with a time bomb – the HNPP, I suffered with chest infection that did not want to clear off and three weeks once it begun I developed breathlessness attacks which left me either loosing any function in my body and extremely exhausted on the verge of passing out, or either made me very stiff in my hands and feet. Every time I went into this and paramedics/A&E/GP saw me I was accused of stressing over something, exaggerating/faking and being mentally unstable. I was so sick of hearing all that and seeing their suggestive looks! Year later I was finally diagnosed with sinus tachycardia which was a trigger of my breathlessness. Since I was put on beta-blockers I had been well. In August this year, after referral from neurosurgeon (who thought I am pain in the butt complaining about bad pains after lumbar spine surgery) for ECG and Nerve Conduction Study that came back abnormal in all limbs, suggestion of HNPP was made and I got refereed to Neurology Clinic. Blood tests shorty confirmed that in fact I have HNPP. Recently I started getting very bad dizziness to the point I feel the ground is moving; when I watch TV and there is more of rapid camera movement I get dizziness too. My right side of the body got badly affected one day in October, however my leg recovered very fast but my hand was weaker for longer and right side of my face dropped visibly. This incident is still being investigated but TIA is more of a suspect than HNPP in this regard. However, since the incident my right side of the body which until then was rather well (if comparing to constant partial numbness in my left leg and coming and going away numbness and discomfort in my left arm and hand) started to play-up since. the leg is not rally an issue but the hand is very much. I am struggling to open a bottle, make a fine movements, I can see how differently I use it when I hold myself to something or try to manipulate it while doing some more specific tasks. It gets numbed and very heavy on its own, not only when I use it. Sometimes they both go off together but usually is one at a time. I now understand that I suffered from HNPP all my life and always had symptoms but I never thought about it. I simply thought everybody goes through same symptoms but no one speaks about it as it is so normal (!?). I had left foot drop when I was little but it went away however I always had very strange feeling on the top of it but since I was able to move it without any problems, no one wanted to believe me. So I thought to myself – it must be more in my head! I was able to dance, to climb mountains, walk long distances, walk fast – always was a very fast walker; was always very energetic and extremely flexible in my whole body. I thought about myself that I am exceptionally healthy being and considered myself very lucky! It was like that until the fatal day, when I developed chest infection and the rest is a history… 😦
    If anyone would like to contact me, please use my e-mail address: jolanta.ch@live.co.uk
    I must add that more and more often I am having very bad pains and numbness going into my hands and I am loosing sleep at night over these problems 😦 Today I have pushed trolley filled with few bottles of water at Tesco, only for few steps, and my pain and burning started in my arms. It got slightly better for an hour so I was able to cook some dinner for myself and my husband, but then the pain and burning returned with an increase. I lied down with half-lifeless arms for couple of hours with tears coming in to my eyes… I am getting more upset on the increase of the frequency and the pain it brings… Oh! and when I was yesterday at the pool, having small exercise with a group of people referred there by their GP`s, I seriously struggled to push under the water the foam things we were given to exercise; I was not able do that with each hand and had to use both on one item and even though really struggled when ladies half of my age older than me did this with no eye blink! I cried quietly on side as it made me understand what HNPP does to me now, how fast it started to progress… Even using the keyboard typing few words makes my forearms, not only the fingers painful and numbed… I really would like to talk to someone who goes through the same issues. Please do not be a stranger if you feel like we have same or similar problems!

  39. Hi Jolanta.

    My breathlessness has not gotten better (was gonna write “improved” but if brethlessness improves does that mean it is getting worse??). But I am managing. Re physical activity; it is a tricky one. You can not push hard as it normally means the HNPP gets worse, but if you do nothing to stay fit the breathlessness increases. So it becomes a tight-rope walk. The only thing I can suggest is to learn to listen to your body. As soon as I feel a thingle when doing something I stop and/or have a break. This obviously means that doing things takes more time than before. But I rather it takes more time than that I loose some strehgth in my limbs for weeks.

    Legs and arms are the ones where you notice the damage soonest as we use them all the time and so it is easy to get the HNPP “attacks”. Seems like many of us manage OK (and often do not even know that we have the illness) when young, but as we get older the nerve damage that we have incurred starts to build up and the recovery starts to take longer and sadly we find that in some instances the recovery is not complete.

    Wish I had some better news. My recommendation is to change how you do things and what you do ro reduce the chances of attacks.

    Take Care
    Pete

  40. I’m living in Sligo, Ireland. After 10 years and 3 different neurologists I’ve finally been diagnosed with hnpp. I’ve done a certain amount of research but some it is kinda overwhelming me at the moment. Is there a group in Ireland that I can contact and get some answers without being confused with all the medical jargon.

    • Hi Patricia, I know of a few people from Ireland, maybe if I contact them and pass on the fact that you want to make contact they’ll show up…
      If you use facebook, you could try the group Hnpp and cmt/neuropathy the link is HERE

      Otherwise I can let them know that you have commented here and hopefully you can connect and have a good chin wag…

      Let’s see if this works….

    • Hi patricia πŸ™‚ im from dublin. I dont know of any groups in ireland but there are groups on fb which are very helpful. The neuros dont give any advice so i find the group fab , they have helped me so much . Jon is just full of knowledge here πŸ™‚ if theres anythin u would like to ask me u can private message me on fb if u like . Helen πŸ™‚

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