I was diagnosed with PPMS at “Jimmys” hospital in Leed in1994 and then again at Leeds General Infirmary in 1996 and then yet again at The National Hospital for Neurology in London in 1996. I had all the usual tests like lp’s and MRI scans many times.Despite being diagnosed three times I was never actually told for certain that what I have is definitely MS.Looking at how fast I became quadriplegic, my symptoms and test results PPMS was given as my most likely diagnosis. This as you can imagine has always had me wondering what if it isn’t. My brother has relapsing/remitting MS and there is history of neurological problems in my ancesters.but nothing like me.
I recently had to go for a fitting for specially designed seat for my wheelchair as I keep falling out of this one . Once again as I explained my symptoms to the Occupational Therapist I was asked “are you sure you have MS?”. Now this is no lie but if I had been given £1 for everytime I’ve been asked that over the past 18 years I’d probably have £30 now. Anyway the reason for this post is to ask if anyone else is so unsure of their diagnosis and have these symptoms. Total paralysis below the neckline but still feel everything and no breathing, swallowing or speech problems. Also despite paralysis I have hardly no muscle wastage even after 18yrs in a wheelchair. There are also other strange symptoms such as not perspiring even when extremely warm.
Am just a wierdo with weirdo MS?
This appears very unusual (understatement). You could keep a record of symptoms and their affects then confront your neurologist about it. A small voice recorder would be useful in this resect! But would it be worth all the hassle of yet more tests etc? I admit this is not much help; merely food for thought.
Kind regards, Steve Mc.
Hi Eddie, not sure if I’ve seen you on here before, so if not, welcome!
Well they do say that MS affects everyone differently… but your symptoms aren’t like anything I’ve heard of before.
I’m assuming you had lesions showing on MRI and a positive LP?
I think the problem with anything neurological is that they don’t really know that much about the brain. Apparently more is known about the universe than the brain. So I think it’s possible that there’s a whole bunch of neurological conditions that get dumped into the ‘MS’ category.
I only recently learnt that some people with MS have very strong muscle tone. One MSer told me that it was her first symptom… she noticed that her calf muscles looked really strong and shapely… but she didn’t work-out or run or anything. Maybe that would account for the fact that you have no muscles wastage?
I don’t know what to make of the not perspiring. Very odd. I don’t perspire much myself actually but I think that’s more normal in women esp older women (which I am).
Anyway hon it seems that you may just be stuck in that category of having a neuro condition that they are calling PPMS.
Have you ever discussed this with a neuro? I think it would be worth having the conversation and see what they say.
One more thing, not everyone with PPMS get swallowing, speech or breathing problems. It all depends where the lesions are in the brain (& breathing problems are very rare)… we all on this board get different symptoms and I suppose the main symptoms we have in common are fatigue and mobility problems.
Nice to see you on here Eddie,
Thanks for your replies and warm welcome… Yes Pat I’ve been on this forum before but I’m usually just a reader.
I presumed that all the lp’s and MRI scans were inconclusive because non of the specialists I’ve seen have said its MS for sure.How many people are told for sure they have MS? As you say its a very hard condition to diagnose.
Maybe another MRI could help with my diagnosis. After all my last one was 1996 and technology has come on a bit since then.
I suppose Eddie it’s how desparate you are for a definite dx.
If you have reason to believe that it could be another condition… esp a condition that there is treatment for, then it would be worthwhile trying for another dx.
Usually they will not say definite MS unless there is MRI and LP evidence to back it up… unless all symptoms are classic MS & there is no other explanation.
I think a chat with the neuro just to see if there’s a possibility of any other known condition might be worthwhile… and yes, maybe another MRI just to see if anything’s going on.
Anyway see how you feel… and how it affects your benefits? (if on benefits). Do you get any bother because you haven’t a firm dx?
Thanks Pat. I suppose the worst that could happen is getting thrown out of the MS Society
Hahahaha… but I’m sure they wouldn’t throw you out Eddie!
And even if they did, you will always be a member of this gang. Once we’ve got you we never let you go…
Hi Eddie, I was very interested in your post, particularly as you`ve had a diagnosis of PPMS, 3 times! Why did this happen I wonder?
I was given the runaround for 14 years. i saw 13 neuros and was highly suspected of having PPMS for much of that time. My clinical presentation was typical of PPMS.
Last year I was told i definitely do not have MS at all. I asked why that was. I was told that after having 4 MRIs, 2 LPs, 2 EMGs, a VEP and oodles of blood tests, to rule out other things, if I did have PPMS, there would have been positive results on at least some of the tests.
My current diagnosis is
spastic paraparesis/cause unknown. It could turn out to be genetic, but i have declined genetic testing, as I am tired of the anxiety that goes with tests.
I have no known relatives with HSP. if I do have it, then sadly, there is a 50% chance of my offspring developing it. There is nothing I can do to stop it happening. I feel bad about this, but cannot help it.
I am really sorry to learn just how badly you are affected by PPMS.
I guess you have had many tests to rule out anything else, yeh?
look after yourself and i hope you have a good support system around you.
I rely heavily on my carers too.
Thanks for that. I don’t tink any of the neuros I saw found anything really positive in any of the tests conducted on me but saw my symptoms and family history and decided PPMS was most likely.
I’m sorry to hear how you’ve had the runaound. One starts to feel like a lab rat eventually. I was always the patient that med students should speak to. The attention of some female students was nice at the start eventually tho’ I realised they were only after one thing. A challenge .
I haven’t even seen a neuros for the past 8yrs. I was told there’s nothing more could be done and left to get on with it.I could always see one if needed tho’. I keep my eye on what research is going on and if there’s any new treatment I could try.
Its just this voice in my head saying "what if its not MS " has gotten louder. I have no hopes of a cure. Just an answer.