Hi Leigh,
Yes, I agree - everyone has numerous disorders, and actually diagnosing people with the correct one can take many years, which I found out myself. I do not suffer from MS, but people think I have it until I tell them exactly what is wrong with me. Many Paramedics say to me or my wife is this normal or am I still in a Epileptic Seizure.
It took a US Team of Neurologists and a Professor to diagnose me 30 years ago, back then I was only the 7th known case in the UK. The Neurologist Team I was under came over from New York, US every 3 months to view various tests that I had to have done.
The trouble is you have an illness or disorder, then you have the patient - the problem comes when there are so many variations of a disorder, some are progressive like MS, and people that meet me for the first time think I have MS, or ME - it is not until I mention what I suffer from that they normally say they have never heard of it.
Focal Segmental Dystonia was diagnosed initially, but has changed alot over the years from Torsion Dystonia, Generalised Dystonia with Cervical Dystonia and Torsion Dystonia - Generalised Dystonia affects the entire body, basically affects me with so many muscles problems (cramps and chronic spasms). I have 6 BoTox Injections every 10 weeks in to my neck for Cervical Dystonia, it helps the neck muscles to not spasm so much. Basically my head, constantly pulls to the left and in to my shoulder.
But that is only my main disorder, I have many others that also affect the nervous system and on over 30 tablets a day...
I did say I suffered from Epileptic Seizures which on many occassions lately has put me in hospital, but I also suffer from Functional Episodes, now this is where complications set in, there are 28 variations.
My wife cares for me, as I am unable to do many things physically and sometimes mentally, this is due to side-effects from medications.
I did not know beta interferons were available on the NHS, let alone used these days. I was offered DBS (Deep Brain Surgery) or stay on controlling medication for life, I turned DBS down because the risk of becoming worse was 95%!!! Which in my books is far too high.
I'm on Contribution-Based ESA (support group) so I guess at some point I will need reaccessing, stupid really 30 years have passed and never had a face-to-face interview, only a private doctor by Social Security back in the 80's! The Doctor was such a nice guy, he even paid the taxi driver double what it should have cost to take me back home. DLA was granted instantly Care was only on Middle back then, but Mobility was on high which I rely heavily on to get out of the house, my wife has to drive me everywhere. Over the years the whole property has been modified in many ways through numerous DFG's, the last one was this year for £3,200 for a Clos-o-mat which is a bidet/toilet and all servicing is done by the Housing Association and annual DFG's.
Opps, sorry I did not mean to write this much - its a problem I have (another story!).
Regards,
Les.