I’ve been ill for a long time (17 years). Work gave me early retirement on ill health grounds.
Originally doctors said it was Chronic Fatigue Syndrome, I accepted that didn’t want to think about it being anything else. My mother died from Motor Neurones Disease and I’ve been told there is a 50% chance of me developing it as well hence burrying my head in assuming it was something less severe.
Every so often, maybe 2-3 times a year I get very ill and spend most of the time in bed as can hardly move. I’ve even got a small mobility scooter for indoor use ! Stairlift is next on the list but at the moment I’m not too bad and can manage. When ill all kinds of strange things happen to my body and mind but over the years I’m now not fully recovering during the good times to the point now where I went to my GP and asked them outright if MND. They didn’t think it was MND, confirmed there was something wrong but had no idea how to progress.
What complicates matter is I have a bad knee from birth defect which means I’m not steady on my feet anyway (I get jelly legs as well), breathing difficulties (Sleep Apnoea and use CPAP machine during the day as well as at night), had at least one and maybe 2 or even 3 small strokes that show up on brain scan, spine damage (affect two fingers on right hand) brain imbalance (determined by in hospital stay), high blood pressure that is unresponsive to medication, and other conditions. All these “muddy the waters” and nobody will commit themseleves to giving a definative diagnosis so I can understand my GP’s position.
I’m completley fed up of this and just want a name given to my main problem. The physical problems are definable but there is also something wrong with my brain. I think I have MS. How do I start the ball rolling to get it confirmed or not ? I will even pay private if necessary although I’m still in a scheme from work that will probably foot any bills.
I sugest your first port of call would be at your local gp and explain your situation but ask if it’s possible if you could be referred to see a neurologist but whatever you do, don’t dx yourself, that doesn’t go down very well at all. I am so sorry to hear of your problems and hope you get a referral. Wishing you all the best.
I can understand your feelings, as I am in a similar situation…except it isnt as bad.
I spent 14 years, being tested for all sorts of neurological deseases. PPMS was a strong possibilty for years.
I am now diagnosed with spasatic paraparesis…cause unknown. I have spinal cord defect and will probably never know why.
There is a possibility that it could be hereditry. I can find nothing on my maternal side of the family with simialr problems. But as I was not brought up by my birth father, i have no knowledge of that side of the family. there is a 50% chance that my children and grandchildren may develop it. It affects everything below my waist. I have been a full time wheelie user for over 8 years now.
So, back to you…MND is a terrifying thought…such a cruel desease. Much much worse than MS or HSP, I`m sure.
Are you currently under a neurologist? If so, then have you discussed with him/her, your family background re MND? You have had an awful lot of illness to contend with, so I do hope you can get a diagnosis which you can live with.
HiPaul, I can completely understand your frustration and the need to put a name to what is wrong (I also had an ME/CFS dx).
If you think that some of your symptoms are neurological, I would ask the GP for a referral to a neurologist.
Also bear in mind (if he/she won’t refer you) that some private neuro’s will see you without a GPs referral (wish I had known this years ago).
If you can’t get a referral, see if you can find a private neuro who also works from one of your local NHS hospitals as they should be able to send you for testing on the NHS, which would work out much cheaper.
I first saw my neuro privately and it was £240 for the initial appointment and £120 thereafter and I now only see him privately when I don’t want to wait for my 6 monthly appointment to get my results.