Negative MRI

Primary progressive MS
1

How common is it to have a negative MRI and a diagnosis of PPMS? Thanks to you all xx

2

I got a negative MRI. Not diagnosed but I hang around here. Fasciculations was my only positive. And my legs of course - which are about 28% of what they used to be. So - it takes time. :slight_smile: all will be revealed. robert.

3

Hi, not sure of the answer, but I have a working dx of PPMS…had it since 2003, but had problems for 14 yrs now. Neuros seem to have given up on me. fed up of chasing them and having extensive tests which prove nowt! sorry not to be able to give any better advice. luv Pollx

4

Thanks both. What a terrible position to be in! Back in Hospital next week. I feel like i want to scream and scream! :shock:

5

Hi. I’m not diagnosed yet as my MRI has been clear. However my problems have been getting worse for over 4 years now. At my Neuro appointment in March, another doctor was present and he suggested that my symptoms appear to be those of PPMS. However, a clear MRI = no diagnosis. It really is frustrating to have so many symptoms which have changed our lives so much, and yet no answers as to the cause. I hold on to the fact that something must show up sometime! Meanwhile, hang in there. We understand how you feel, so continue posting. We’re here to support each other. Take care, Bren x

6

Lenin wrote:

Thanks both. What a terrible position to be in! Back in Hospital next week. I feel like i want to scream and scream! :shock:

Hi, I would join you in that scream…but I`m all screamed out! luv Polllx

7

I was diagnosed PPMS back in 1991 The MRI was clear /negative. The diagnosis was made after a Lumbar puncture, and signs and symptoms. I did have another MRI a number of years later and that one did show scarring

8

I think that the neuro is going to insist on an LP This is going to be impossible I am a single Mom with no extended family and 2 young children. I have animals , dogs , horses , chickens and ducks etc etc. I would not be able to rest for 30 minutes let alone a day or two! Fact is i have to drive myself to the DGH which is 1 1/2 hours away , as we live in the middle of no where! Do you think the neuro will understand? :? I can feel that scream coming on!! xx

9

My neurologist has recently said that he thinks I have PPMS, but has said that a lumbar puncture is necessary to confirm diagnosis. I went for one last week but the first 5 attempts involved hitting a nerve and I passed out before they could take enough fluid. Has anyone else experienced this and then had an LP that was OK when it was done? At the moment I am not looking forward to another one. I am worried that if I do not agree to it then I will never have a confirmed diagnosis.

10

Hi Saffie, I see this post was from last year…but since I replied to it, things have changed yet again for me.

i saw a different neuro (bringing the total neuros to 13) in Jan, this year, and she dismissed MS again and tossed me back to HSP. Yet she wrote in her report to my GP, that PPMS is still a remote possibility. She did mention another LP, but I said i was reluctant to have one, as the first was soooo painful. But I have read where others have said theirs` were painless.

Hope your`s will be like that too, if you do have one.

I have very little faith in our local hospital`s neuros. i may ask for a referral to a top man in Leeds…a Dr Lily.

Wherabouts are you?

luv POllx

11

Hi Poll

I am in Surrey and have now been referred to St Georges for another LP. Am hoping this one will go better and that things will get a little clearer. I am only on my second neuro. First one used to just ask me the sames things over and over again and sit there scratching his head. He obviously didn’t want to say what he thought it was, so he referred me to another. The new one said straight away he thought it was PPMS but I needed the LP to clarify. If this one goes well and I get a diagnosis of MS I will try and find out who are MS specialists round here. I have had very little information about that from the hospital. I can’t beleive you have been to 13 neuros. I have been told the latest guidelines say you do not need to have a positive LP for a diagnosis, but they all seem reluctant to commit themselves.

I hope you get your referral to Leeds.

Saffie

12

Hi,

I had a negative mri but positive lumbar puncture and walking difficulties that slowly got worse. I was diagnosed based on symptoms,signs and positive lumber puncture. Mri later showed cerebral atrophy and chronic ischaemia which I think is common in ms. PPMS is difficult to diagnose and other conditions need to be ruled out first. Take care and I hope you find an answer. Anita x

13

Ive read this with great interest, Ive had “normal mri” I have never had any change in symptoms for 3 yrs no remits no relaspes just shear hell, my mobility has gone, I now need a wheel chair I cant see to my own personnal care, im doubly incintenent etc, my mri were done with no contrast, I have been sort of dx with me fibro, but this post makes me wonder

14

Hi

I too am worried that I will end up being one of those statistics i.e never getting a diagnosis. I believe I have PPMS and can relate 40 years of common symptoms. After 3 neuros have been to latest one today at Tamworth and he has finally agreed that I can have an MRI of brain and neck but boy, was it hard work persuading him. I accept though, that it may not show anything and I still won’t get any answers. I have an urgent need to know now as am experiencing major problems at work.

Still, I know that I am not alone, this site is a great support. I always come on here after a neuro apptmnt or after a new strange, unexplained symptom and I always feel reassured and better afterwards.

Dianne