Last reply 5 years ago
Lost :(

Hi all,
Called the neuro secretary again today, trying to get results from
Mri I had nearly 4 weeks ago. She said that the spine was clear of abnormalities and the brain was unremarkable 🙁 I feel totally lost and confused. She is setting up another appointment to talk to the neuro sooner than my July appointment.

I can’t get my head around it. I feel like I’m making these bloody symptoms up. They just be all in my head. I feel so angry. 🙁 I’ve had twitching, shooting pains, numbness, co-ordination/valence problems for 7 years. I thought I was getting closer to an answer but I have never felt more alone.

If I don’t have ms, then what do I have? On gabapentin, and that seems to be helping the twitching, but I stil hasn’t gone totally. In my head, the diagnosis I ms was the start of understanding and coping with it, now I have no clue and feel stupid.

Sorry to rant, just don’t know who to talk to.


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5 years ago

I don’t reply to many messages Jasminefairy but could not read your message & leave. I can understand how a diagnosis for ms would help but don’t feel stupid, at least they are going to sort you an appointment sooner than July.
We are all here for you so rant away

5 years ago

It took me quite some time to have it all put together too. Have you had a lumbar puncture? Perhaps when you are speaking with your doctor you could suggest this as the result of it would give more of an indication. Hope this helps, feel better!

5 years ago

Thanks for the support. At my first appointment with Neuro he mention having nerve conduction tests but I haven’t had an appointment for that, only had the mri and blood work so far. I hate feeling in limbo and feeling like I’m the only one who knows what it feels like in my body 🙁

I hope I get answers soon.

5 years ago

Hi jasminefairy i’m sorry your having such a hard time. I’m not sure if this will be helpful to you or not but my first MRI was clear as well back in 2008. i’d have symptoms for 2 years and it came back clear. I could tell the neurologist thought i was wasting his time.
but i continued to have symptoms so I had another MRI 3 years later and my brain lit up like a christmas tree with lesions.

Try not to doubt yourself. like @Aoife said maybe a lumbar puncture might help you get some clarification?

Whatever the outcome you can still rant away on here! I hope you get some answers soon, the waiting is awful.


5 years ago

It’s good advice above. The Lumbar Puncture is used to rule in, or out, MS, when the MRI is inconclusive.
Try not to be too hard on yourself. Our bodies are quite complex pieces of equipment and specialists have to try and make diagnoses, based on what they can see, what they’re told and the results of a couple of tests that are available to them.
Consider yourself to be pretty jigsaw puzzle, with the neuro trying to locate the right pieces to reveal your picture.
The more you stress/worry, the worse your body will react, So, try not to – I know, easier said than done, but worry and stress are a waste of emotional energy, which achieves nothing.

5 years ago

Thanks, lots of great support and advise. Very much appreciated. I wish I felt more in control of everything. Is it possible to be having all the symptoms of ms but no lesions on mri? I know so little, but though that nothin means definatley no ms. Is it not as clear cut as that? I guess I will get the answers after more tests.

Thanks again everyone.

5 years ago

Sure it’s possible to have MS with no or few lesions. I’ve had 1 exacerbation in 1985, then no more, just slow progression. I have oligoclonal bands in spinal fluid, very few lesions. Spinal cord atrophy is major finding on MRI for me and that wasn’t noticable until recently.

Not having lesions is good, relatively speaking. Unfortunately, no drugs are approved for stopping progression. Maybe newer drugs will be good for progressive MS, but they are only in trials now. A LP should help to clear up your situation. Then maybe try a drug trial. You may have SPMS like me. After my optic neuritis, I didn’t do anything, mostly because there were no treatments at the time. I did notice all the little things that became progressively worse. Since my 1st symptom was classic optic neuritis, I kind of knew what was happening. Without that, I’m sure that I would have been wondering what was going on.

If you can, get in touch with clinicians who are running trials in your area. They usually know more than your typical neurologist or MS nurse and all the testing necessary for the trial will let you know what is going on. I’m in the RIVITaLISe trial for SPMS ( I’ve had more MRI’s than I can count over the past year, along with 3 LPs, evoked potential tests and functional tests. I’m not sure where you live, but if you’re anywhere near London, I would contact this group: Barts and The London Neuroimmunology Group. They are recruiting for some trials (PPMS, SPMS & RRMS)and you may qualify.

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