Hello, I’m new to the forum and I just wondered if anyone had been given a “working diagnosis” of ppms? I’ve been seeing neurologists for two years with progressive spasticity and weakness in my legs and arms, and more recently mouth. My MEPs VEPs and SSEPs are all abnormal and EMG is normal except for patch of denervation in my right shoulder. But reoeat brain and whole spine MRIs don’t show ms lesions and csf had no ocbs. I have a lot of muscle twitching and the mnd consultant I have seen thinks it could be PLS but thinks the VEP and SSEP results might make PPMS more likely. The ms consultant who I also see said that I might be given a “working diagnosis” of ppms. My consultants are really good but I’m struggling because it seems my CNS is showing so many symptoms (which are confirmed by the evoked potentials) and my disability is increasing, yet the MRI and CSF is not telling them why. I’ve had a course of iv steroids and then oral course, but it had no effect. The only diagnostic thing seems to be a slight bit of signal intensity on my brain mri in the inner capsule where the corticospinal tracts are. But this is I gather evidence for my motor difficulty but not ms. I am obviously grateful that my mri is largely clear and the lumbar puncture too, but I just don’t know what to think or hope for. The fear of the trajectory I’m on in terms of symptoms is also very scary. Just wondered if anyone was in a similar situation? Thanks lots, Pete x
Hi Pete and welcome to the board .
We do have others on here who have all the symptoms of MS but a clear MRI and LP. For neuro to diagnose MS of course they need at least evidence from MRI or LP (Macdonald criteria for diagnosing MS).
IF it is MS the fact that the steroids didn’t do anything would point to PPMS. Steroids usually help symptoms of RRMS.
It’s a frustrating situation to be in, but on the other hand at least the neuro is willing to say ‘working diagnosis’ of PPMS. Very often without MRI or LP evidence they say it’s not MS at all which can be even more frustrating if symptoms point to MS.
Just because MRI and LP are clear now doesn’t mean they will be this time next year, or in 6 months. So I suggest you ask the neuro if you can have both again at a future date.
It can be incredibly hard to diagnose MS as you have found. Hang on in there. Plenty of other people in the same boat but nothing can be done without more evidence.
I know it’s scary, but you know even with PPMS symptoms can improve or progression can stop altogether.
Hope this helps,
Pat xx
Thanks lots Pat, that is very helpful.
Hi Pete
Pat has given you excellent advice, hang in there, if it is ms it will show sometime, but patience is needed (easier said than done, I know).
In the meantime, welcome to the forum, lovely helpful and friendly people here, always willing to listen if you need to vent, or offer advice where they’d can.
Pam x
Hi, Pete. This is all similar to my situation, as MRI, LP, evoked potentials - everything, in fact, show normal, but I have a set of symptoms consistent with PPMS. My consultant said to use PPMS as a kind of ‘working title’ and so that is what I say to people is wrong with me. Also, I applied for and got full rate PIP, again using PPMS, also travel insurance which didn’t carry any excess as I am not taking any medication. It’s a hard road, and after 4 years I am still angry, bitter and at times despairing, but you just have to keep on keeping on and put on a cheerful face for the sake of all the people who care about you. This forum is fantastic and there is heaps of support as well as laughs. Good luck!
Thank you all for this help and kindness, it means a lot.