Im a bit confused, after reading about the mcdonald criteria would i be right in thinking that for a neurologist to diagnose primary progressive ms a person would have to have ongoing symptoms without any break for over a year. My pattern of symptoms appears to be fairly constant with possibly up to 2 weeks of feeling better, not sure that i have gone over 30 days. do you have to get more symptoms with primary progressive in a short period of time ie in a year or can you have the same symptoms which get progressively worse. If i get a diagnosis of ppms will the neurologist not diagnose me until a year has passed. i have had symptoms on and off, more on for ten months. as i said , very confused. can anyone help please x
Hi my neuro thought that I had PPMS. Progessiong right leg weakness and spasticity. I have had 3 MRIs and 2LPs. both lps are clear. First 2 MRI showed a lesion on cervical spinal cord 3rd one it had gone. I have no dx as yet.
But for PPMS to be dx
you usuallyy need a positive LP plus 1 or more lesion on spinal cord or 1 or more on brain
and progressive disability in one or more areas.
Thanks very much for replying Moyna, less confused now. How long was your progression of weakness and spasticity, was it over a year. x
My neuro says it’s highly likely I have PPMS but it seems to be the case that only time will tell…
I had a spinal MRI first after a fall amd there were little white dashes all over my spinal cord and neuro said it appeared to be MS and booked me for a head MRI.
The MRI showed a lesion (which I now believe was a bit of a whopper!, having seen other MRI’s on the internet) and ‘Dawsons finglers’. By then I’d had mega dose steroids and had only minor improvement of symptoms.
I still don’t feel as bad as I did the couple of weeks prior to the first neuro appointment… but I think part of that is down to the knowledge of how not to send my vertigo into overdrive with certain movements and that a hot bath will make everything a lot worse.
So, whilst I have just a small glimmer of hope that I might start to feel better, I think that since it’s been about 14 months since my first bad episode of not being able to walk properly, it hasn’t actually improved at all but at the start it was a very random thing that came and went within hours, the incident 14 months ago was in London and I staggered around like a drunk when confronted by rain and cobblestones BUT later in the evening, on the flat surface of a train station, I was walking perfectly normal again. Hindsight is wonderful thing tho, I think it’s been at least 5 years since I was able to walk in flip-flops without accidentally kicking off the right shoe so I’m beginning to cotton on to the idea that things were maybe not quite right for a long time!
I did ask if it was definitely MS and I was told yes, it was MS, just the type was not clear. I did not need a LP. The neuro said it “sounded like it had crept up on me” and I had even used those words to describe it, I wasn’t in limbo for ages like so many, It was a bit of a shock really as since this started the only improvement is that L’hermittes comes and goes now, It was there all the times before the steroids.
Sorry for waffling, hoping to give you an accurate idea of how my ms diagnosis went, I will see the neuro mid next year and I guess if nothing actually clears up/improves significantly then I’ll get the ppms label
Hi my problems started about five years ago with continually spraining right ankle. My right leg is the only area effected really. The confusion with me is that I had radiation treatment in the neck area 23 years ago and I might have 'post radiation myelopathy. It tends to only effect the horn cells of the spinal cord which control the muscles. As time goes on I think this is the case as I have no sensory problems in the leg - the radiation does not effect the sensory nerves. consultant is confused as it shouldnt really happen to folk who had my treatment for hodgkins.
thank you both for your replies. sonia the pattern and symptoms you describe sound very much like my own. all this has started with me last november , better days and hellish days. im 46 but i remember an incident when i was 30 which led me to get eyes checked at option, at the time the optician didnt say anything but handed me a letter for my GP and said i didnt need glasses. i was having blurring and dizziness/vertigo. anyway i dont know what the letter said but stupidly didnt hand it into gp or follow it up. since then i have had periods , maybe lasting 2 or 3 weeks every couple of years of dizziness/vertigo which the gp put down to labyrynthitis . then from november all the pains, walking problems, tiredness , numbness , as well as 2 episodes of blurring which optician recently said was probable optic neuritis has happened. although im not diagnosed,( i see neurologist for first time tomorrow) do you think maybe i have had rrms and this is a horrible ongoing relapse and not ppms. in know nobody can tell me but neurologist whats going on but wondered if anyone had any opinions.
thanks so much x
You just jogged my memory Serina, I was referred to an Opthamologist after an eye test last summer (and I still don’t know exactly why) I thought it was glaucoma related and the opthamologist said I was fine.
I really hope it’s nothing too bad for you… it was a shock for me as I didn’t even really know much about MS, I don’t even know anyone with MS. If my osteopath hadn’t written to my doctor suggested an MRI was needed, well, I have no idea what would have happened - I’d have probably had to beg my doctor’s surgery to do something! I remember when I mentioned a few problems walking and a B12 check got added to my blood tests.
I really wish I could give you more answers but MS really did pull the rug out from under my feet! I only took time off from the gym I taught classes at come the end of March when I couldn’t lock my leg out after a hot bath - I really did carry on regardless til I was forced to take stock… ps. pole dancing is quite dangerous too and vertigo NEVER stopped me doing ridiculous tricks at a great height! Oh, I’m 43 by the way.
Try to stay positive and good luck with your neuro
I think yours does sound more like RRMS and up until now you have followed a more benign course. There is a user MrsH on here and if you look back at her posts a year ago your situation looks the same. She is also around 45 too and had symtoms years ago before dx.
Oh Sonia , POLE DANCING, i am impressed. ive just recently given up the gym and decided swimming was good so do that couple times a week when not too tired . Thanks Moyna , ill dig deep and find those posts from Mrs H x
I fit the criteria and still wasn’t dx straight away.
Was told transverse myelitis, took 3 relapses (clinical episodes) before they made it official.
so do you have ppms or rrms Mrs Chicca
RRMS, although I’ve had a few new symptoms start in the last 9 months so they’re thinking possible SPMS now. I’ll be devastated if it is, as my business has just started to recover from the recession.