Tomorrow is the big day. My first neurology appointment for 6 years or so. I haven’t really set my mind to what I am going to say, and which problems I want to discuss. I suppose it has to be first and foremost the problems with my shoulders and upper to mid back. After all it was these problems that first prompted me to ask for a neurology appointment after my son and I were diagnosed with HNPP. That might sound odd, but I wasn’t diagnosed by a neurologist, my son and I had seen an orthopaedic surgeon in relation to my son’s ulnar nerve entrapment, or what was thought to be ulnar nerve entrapment. There was no entrapment, and familial history suggested hereditary neuropathy. Nerve conduction tests followed, then the DNA test. All without seeing a neurologist.
My son was first to see a neurologist, I thought it better that he was seen first, without any influence from me as I have other health concerns. In fact I didn’t see much point in seeing a neuro, until I had a recurrence of the mid-upper back problem that had been troubling me on and off for the previous 10 years. Several years before we were diagnosed, my GP came to the conclusion that my upper back problems were due to a pinched thoracic nerve root. It made sense at the time. And was actually quite reassuring as it wasn’t anything more serious, like coronary disease etc. But now with an HNPP diagnosis, having a pinched upper thoracic nerve root seemed like it could have more significance.
My son seemed to see quite a cautious but thorough neurologist, one who decided that further scans were necessary to check that my son didn’t have any other reason for what appeared to be sciatica. An MRI was done, and nothing particularly unusual was found. So the problems were attributed to HNPP.
I was feeling quite positive about seeing the same neurologist, I thought there would be a good chance that I would have scans on my back, to check for any physical reason for entrapment of spinal nerves. I realised with HNPP that it was probably not the case, but it would be good to know for certain.
Two weeks after my son’s appointment I roll up at the hospital to find that Mr. Neuronice, had been replaced by Mr. Neuroarrogantknowitall. Who immediately dismissed all my problems as a figment of my imagination. I should have complained there and then, the guy was a complete arse. But I let it roll thinking that perhaps by my next appointment he would have had the courtesy to actually look up HNPP to see what it involved. Not a chance. Another appointment six months later and I’ve been relegated to see the junior Doctor. Who was pretty good in all fairness, but it was the other jerk I was gunning for.
I then asked to see Clinical Genetics again, as I was worried about my elderly mother who had been having some very similar symptoms. They were very nice on the phone, and suggested that they could see us both to discuss the problems. Hooray, I thought… But on arrival at the clinic I was immediately confronted with accusations of attention seeking. I was furious, but could not say anything with my mother present. I left there feeling so isolated, with a disease that know one seemed to care about, and symptoms that were being dismissed without any further investigation.
It was at this point that I contacted the Muscular Dystrophy campaign in the UK. Although HNPP is not a muscular dystrophy, it is an HMSN (hereitary motor sensory neuropathy) and is one of the conditions supported by the MDC. The care advisor contacted me and arranged for me to be seen at the ‘Muscle clinic’, which sees patients with neuromuscular disease.
There was some improvement, I was referred for for tests, x-rays on my chest which I thought were for my spinal problems, and referral to an orthotist for assessment of the problem with intermittent foot drop. The x-rays were looking for lung disease, not spinal issues, but whilst that still left the spinal issue unresolved it did lead to a referral to a respiratory doctor and eventually treatment for COPD and asthma. It was also found that I had a slight neuromuscular weakness of my diaphragm and other respiratory muscle.
The Orthotist immediately recognised my problems of foot drop, just by looking at the wear on my shoes, and noted that a very high arch needed supporting. I was given an ankle foot splint to help wih the foot drop, which immediately enabled me to walk in a better way. Unfortunately, the wait for this help had caused me to develop Hip problems because of the very altered gait to accomodate the foot drop.
Unfortunately, the neurologist who was working at the ‘muscle clinic’ left to work elsewhere, the local health authority decided that it no longer needed and muscle clinic, and within 18 months of being referred to the clinic, it was no more. I was assigned back to general neurology. And back to neurologists who quite frankly do not understand HNPP and have no interest in learning about it. It seemed that their view was that they had far more important things to do than learn about a ‘mild’ disease which had no treatment or cure anyway. There was nothing in it for them, no gongs, no plaudits, no interest. I felt nothing more than abused and humiliated by them.
At this point I had had enough, and decided to put in an offical complaint. This led to some form of resolution with Clinical Genetics, but as far as neurology was concerned I had come to the conclusion that there was nothing worth pursuing. It seemed a better idea to just let the yearly appoinments lapse, and not bother to see them for a good long while.
So here I am 6 years later, and I’ve requested a neurology appointment. The good news is that after much campaigning by the MDC and service users in the south west region, the NHS has reinstituted the neuromuscular clinics. The South West Neuromuscular Network has been set up.
The symptoms that have prompted me to try again, are
1/ the continued problems with upper-mid back, neck and shoulders, which are getting worse. Eleven years on from my first request to see a neuro, and I’m still waiting for them to address this problem!
2/ The start of what appears to be something akin to trigeminal neuralgia. Facial pain, numbness, and headaches.
3/ Further problems with vertigo, tinnitus and hearing loss, probably due to deterioration of my good right ear.
4/ Hip pain and upper leg weakness which has not fully resolved over the years.
5/ And difficulty in maintaining any form of exercise schedule due to continual problems caused by exercise, ie sudden weakness and sensation loss specific to the exercise. My respiratory nurse specialist has suggested I bring this up, as he has suggested further respiratory rehab sessions, but I cannot maintain them becasue of the problems HNPP gives me. Generally I would like to start some coordinated therapy which is on-going and able to adapt to my needs. Mostly, what is offered are 6 week courses, or 6 week sessions of physiotherapy, and then there is very little follow up. I need more continuity than that, something which will build over a period of time, and which is flexible enough to cope with my ever changing conditions.
Tomorrow is N.Day…