Could I have PPMS?

Hi there

4 years ago I had a bad attack, numbness, l’hermittes, wobbly legs, diarrhea and fatigue. I had an MRI and one lesion found in neck. They said it was tranverse myelitius. I recovered after about 12 weeks but was left with a little spasticity in right leg. This spasticity has continued to get worse and I have a bit of limp now. I recently went back to neuro and had repeat brain&spine MRI and lumbar puncture. I just got a letter today to say there is still only the one lesion in neck and lumbar puncture was clear. I have to see him again in November and was wondering if he is going to give me a diagnosis of PPMS or Relapsing MS… I am wondering if spasticiy can get worse without disease activity?

Thanks xxx

Hi Anon, welcome and sorry you are going through such a rough time.

To get a dx of MS you need more than one lesion separated in space and time. That means lesions in different parts of the brain or spine (space) that have occured at different times.

Because of that criteria, and your clear lumbar puncture, I think it unlikely at this stage that you will get a dx of MS. I would think they will still go with the dx of TM.

I would think they would want to monitor your symptoms and then go for another MRI and possibly another LP at future time.

However, I’m by no means and expert so you are going to have to wait and see what neuro says.

Getting an MS dx can be a long and frustrating business and I’m sorry that you are stuck with these difficult symptoms. See what the neuro says in November but keep in mind there are a whole bunch of conditions that can cause the symptoms that you have and certainly TM can be the cause.

Pat x

Thank you so much Pat for your reply. I just know things are not right and I just want some treatment. I will get nothing until I get a dx I suppose.

Thanks Molly xxx

hello,

reading your post I thought how similar our situations are. I have multiple spinal lesions', inconclusive’ spots on brain, 10 oligoclonal bands unique to CSF and had gradual loss of sensation starting with a big toe, now up to my sternum on both sides, with increasing spasm and stiffness and takes ages to have a wee! Really sad that my hands are starting to go now, mild tremors and clumsy'. I have the balance of a toddler. This has occurred since December 2010 progressively with no periods of recovery’.

If I have MS, it is hard to see how it can be anything other than PPMS, however the neuro was very clear, he cannot say I have it, yet stressed I had to tell DVLA, insurance etc straightaway. After feeling like a pincushion, he said he had ` ruled out’ everything else but MS.

If I have it, I would like to try at least some symptom treating drugs. I work full time and it is really effecting my ability to do the job, yet without a `diagnosis’, my boss is making veiled references to me making things up! I saw OH, and asked them to check my med.records with the neurologist but they chose not to.

Can I go to my GP and ask for symptom treating drugs or do I need it to be the neuro, or do I have to wait for him to say the words? Any advice appreciated!

n

Gosh you seem to have quite a lot going on. Is your mobility affected or is it just sensory? Go back to doctor and insist on something. My GP thought there was nothing wrong with me and wouldnt refer me initially to neuro. So I went back and exaggerated my symtoms - then he refered me!

xxx

I was dx many years ago and my situation was very similar to yours in that the neuro wouldn’t say I had it but agreed that it couldn’t be anything else.

I had payment protection insurance so there was quite a lot riding on a dx. I got a second opinion and the 2nd neuro was happy to say that I had MS. There was no discussion about the type of MS and I didn’t know enough at the time to ask. This was 17 years ago!!! I had a decade or more of no change (so I didn’t have RR) but now things are progressing quite quickly. My notes say SPMS now but I may have had PP from the beginning – who knows?

All those years ago there were no drugs so it didn’t really matter too much but things are different now. You can only access DMDs through the neurologist – your GP can’t prescribe them. But I don’t think you will qualify- you have to have had 2 significant relapses in the past 2 years. There is no drug treatment for PPMS or SPMS so don’t worry that you are missing out on something.

It’s very frustrating to know that something is wrong but not to be able to make it unequivocal to work (This was another reason I was keen for a dx) I live in a big town with two major hospitals so getting a 2nd opinion meant going to a different team and was fairly painless it may not be as easy for you.

Jane

hi again, thanks for the replies. I walk slightly limping in the mornings, and much more staggery drunk' in the afternoons. It depends what I do in the day-over doing it’,now appears to be very little now.

I’m not sure I have the lingo for MS right yet, it seems it has it’s own jargon? I generally can’t feel my feet or legs, but the loss of balance and hand shakes appear to be motor control rather than sensory (is that right?).

I don’t really know how to get a second opinion, or whether my neuro is just following the book for diagnosing PPMS. Went to an osteopath in December 11 as I had mentioned a numb foot to GP who said it’ll be a trapped nerve. Osteo checked me out and demanded I see the GP again asap-said it was extensive peripheral neuropathy and to get b12 checked. Saw my GP in Jan who checked B12 was ok and sent me straight to neuro.

I’ve seen the neuro first in April, then July. Next is December. I guess with the lumbar puncture, mri and sensory and motor symptoms it just needs the over time' proof as I have the space’ bits of evidence of CNS inflammation.

I did check my mortgage insurance, just in case there was a little silver lining; sadly I don’t have critical illness cover as if I had, it did list, `MS with current symptoms’ as a payable disease.

I’ve been reading this forum for a few weeks and learnt a lot from posts and I’m really impressed with how supportive it feels. Just wanted to say thanks.

Sian