Hi everyone- first post here! I’m hoping you could comment on the following to see if any of it sounds like PPMS?
I’ll try and summarise what’s been happening till now -I’m now in my mid 40s- I was diagnosed with M.E. back in 1997- no problem there - fully agree.
Things remained stable for years - however in 2006 I began to get more pain especially in my legs, began finding it difficult walking across room, was put on opiates and began using a stick. Roll on 4 or 5 years and the “fun” started. I had several things kick-in around same time- my previously wonderful blood pressure became high- and remained so- even going so out of control I wasn’t allowed to leave the GP’s room till it dropped below 200. However the next day I was rushed to hospital when it hit 222. I also found out that I had tachycardia and so have also remained on beta blockers. Around same time my neuropathic symptoms began - tingling, partial numbness in both feet and legs to knee, both hands and arms to elbows. I have incomplete bladder voiding and trips to the loo in night. I saw neuro January last year when my balance problems had developed. I had brain and spine MRI that were both clear so as my symptoms were not relapsing and remitting and scans clear he doubted it was MS. He gave probable cause as Fibromyalgia but told my GP if symptoms progressed I was to be seen again.
Well unfortunately things have done just that and I’m due back at neuro’s in 2 weeks. Since last January 2015 my tiredness has become the worse it’s ever been - for the past 15 months I have to go to bed after lunch every day- and it’s continued to get worse. I have had some further areas with partial numbness, I have found myself biting the inside of my mouth and tongue, I get the sensation of a spider crawling up my leg and sometimes a cold wet sensation on top of my right leg.One day I was unable to name the street my brother has lived in for 20 years which was really worrying. I am doubting the Fibromyalgia- I keep reading about flare-ups and that is not me at all- I am slowly finding things progressing. I have a positive Romberg test but no more info as yet. I have read about PPMS - does any of the above sound familiar or could it be something else entirely- I had the usual multi-blood tests to rule out Lupus etc etc. Fibro just doesn’t sound right to me? Thanks everyone!
I’d heard about foot drop but wasn’t sure whether it’s referring to a permanent event or something that happens occasionally? Why I ask is that I occasionally get what I call a missed step with my right foot - instead of doing the up/down it just scoops forward? I don’t know if I’ve described it very well but doesn’t happen that often - always the right leg though. What really turns my stomach though is trying to walk bare-foot, it’s like the bottom of my feet are pure jelly- feels awful. My legs seem to be my worse problem- at least they were as now the tiredness is a close tie for pole position!
Also silly things like having trouble hand-feeding the hamster little treats, as half of them fall from my fingers as I’ve lost a degree of feeling in them. Things I could do before but having trouble doing now- you know? I’m going to take a full list of symptoms this time plus a list of those that had kicked in since my first appointment last year.He had asked me back then when certain symptoms had begun but I couldn’t remember- but now I can tell him what’s started since Jan 2015 so that may help. Obviously I don’t want to have PPMS but something is telling me it’s not Fibro- so I’m trying to make sure of a correct diagnosis whatever it is. The Romberg test was quite memorable - the poor chap was stood in front waiting to catch me if I went over- trouble is I toppled backwards instead!!
If anyone can suggest anything else to note down or ask ,before the appointment (21st), I’d be very grateful - as I said it’ll be my 2nd with neuro- my letter from him said as my GP had notified him my symptoms were progressing he wanted to take another look at me - not sure what will be done differently this time - maybe asking for repeat MRI?
Anyway- thanks all for taking the time to read this- it’s much appreciated!
hi again - thanks for that- it’s interesting as like everyone else I’ve tried going online to get answers - 8 months on a waiting list is a long time and I guess we want to do our own detective work while we wait!
I’d read about foot-drop but it didn’t seem to say whether it can be an on-off event - but I’m guessing by your reply that it can?
Can I ask- has anyone - whatever your diagnosis- had the inappropriate emotion response we hear about? Why I ask is that I have a bizarre thing of bursting into tears instead of laughing? Say there’s something really funny on tv - and I go to laugh- but I sob instead? It’s really peculiar- and obviously isn’t something that happened before- but seemed to begin same time as my other neuro symptoms. I hadn’t even mentioned it to neuro last year as I hadn’t realised there was any significance- but during my “detective work” online I’ve read that yes there can be a medical reason for it. I thought it worth mentioning in case anyone else has had something similar.
I hope you manage to get your referral soon, though NHS waiting times are pretty long right now. From research I have recently read ME mimics many signs of MS (the Epstein Barr virus may be an indicator for both). It was suggested by my GP around 25 years ago that I had ME and I’ve managed my mild symptoms for many years. I now have a number of MS-type symptoms, together with moderate/severe ME symptoms, but have a clear brain/spine MRI though am awaiting further tests. Many of my symptoms are what I would refer to as neurological now but I do wonder if they are actually a flare-up of ME. I guess time will tell… What I am currently learning to accept through keeping myself as positive/relaxed as I can, is that any diagnosis will not change anything and to try to accept what will be, will be. Easier said that done though when it affects your life so much.
I forgot to ask you all - do any of you ever have Petechia rashes? I get the occasional little cluster around my neck but in May I had one develop from my neck to my shoulder- it was so large I took a photo and will show Neuro next week. I have read it can happen with auto-immune problems but could just be my long-term M.E. - I wondered if any of you experience it?
My best friend has lupus and she gets the rash. It’s disc shaped though and can be anywhere on her body. Symptoms are quite similar from what I can tell. A rheumy deals with lupus. Not suggesting it is that at all. Just throwing it out there.
Hi - I’ve had the anti-nuclear antibodies test done and that was fine so they ruled out Lupus - I think I had the test more than once so doesn’t seem likely - but is certainly worth other people considering it if they’re in limbo.
I similarly get a rash (mostly across my face) and likewise tested negative for Lupus. I believe lupus is one of the conditions to be excluded prior to investigating for MS. Our symptoms sound very similar!
I guess all I can do now is wait for my appointment on Thursday I’m going to do the list of symptoms today and those that appeared or worsened since last year- I don’t know whether he’ll want scans repeated but I’d have thought he’d have asked for them to be done before the appointment like last time- so perhaps not.
I know he can’t do anything about the numbness spreading / worsening but if he could suggest something for the tiredness I’d be happy. I’ve just started taking CoQ10 and also D3 - been a week so far and no difference yet but I guess it takes a while to work - if it’s going to!!
Interestingly during my “detective work” I read that there’s some now saying that the M.E. patients like myself who have been told they possibly have Fibro too could simply be experiencing a worsening of M.E. and not have Fibromyalgia- I don’t have flare-ups and don’t have the pain manifest itself as “pressure points” so personally I doubt very much Fibro has anything to do with it - the pieces don’t fit the jigsaw if you get my meaning!
Neuro will either say no he’s not thinking of PPMS or ask for more tests - but if - numb fingers crossed- it’s out of the picture then I hope he will not just leave things up in the air - say for example it is a dramatic worsening of M.E. then why? What could have caused that after years of being at a plateau? Something must have happened to trigger a change?
I know some people will say perhaps we’ll never find out - but I’d like to know where these symptoms are heading- not because we can do anything about them - but just so I’d be aware of what to expect. I know many of you have probably felt the same at some point - so a big warm hug to all of you