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Diagnosis negative?

Hello, first of all I apologise as I am sure this question may have already been asked and answered somewhere.

I was told by my neurologist that she suspected MS from my symptoms and her first review of my MRI report. This report was then reviewed by a multi-disciplinary team who believe that I did nt have MA. That was almost 1 year ago and since then my symptoms seemed to slowly ease and were barely noticeable. However, following an ear infection several weeks ago most if not all of the symptoms have returned.

Example:

left forearm and hand, weak, slightly numb and tingling.

Legs and hips very stiff, heavy and weak.

Balance poor.

and absolutely exhausted, often from the moment I wake up.

so to the question, has anyone been told they have not got MS to be later diagnosed with the condition?

So far I have failed to find something other than MS to explain my symptoms.

thank you

steve

Not quite the same, but I have a copy of the letter my first neurologist sent to his head of department when I was so upset with his treatment of me that I was insisting on an immediate 2nd opinion (well, actually my husband did the insisting - I was a gibbering emotional wreck and couldn’t string a coherent sentence together!). In it he says “I have assured her that she doesn’t have MS”. I hadn’t mentioned MS to him, we were just worried about a sudden bout of serious symptoms . Eventually though I was diagnosed by his boss as having MS and he was diagnosed as a c**k!!!

Hi Steve,

Twenty years ago ish, I had an MRI which showed a couple of lesions, and a lumbar puncture which showed the CSF was positive for oligoclonal bands, I was told, ‘it’s OK, you don’t have MS’. (The report back to my GP didn’t say that, it said, ‘we won’t mention MS unless she specifically asks’!)

Back then, there was no value in being given a diagnosis since there were no DMDs.

Today, the reverse is true. If there is a possibility that the original neurologist was right and the MDT was wrong, then you should probably be referred by your GP to a neurologist again. Maybe to an MS specialist, if the original neuro wasn’t, or back to the same doctor if she is an MS specialist.

I am assuming here, that when you were told it wasn’t MS, that you were then discharged, if not, then I’d get straight back to the neuro and ask for an appointment to discuss where you are now.

Sue

Thanks Sssue,

i wasn’t discharged and have a follow up with her next Monday.

I am 52 and when these events return I feel 100. Getting out of a chair is difficult and painful, my legs from the knee down tingle in a way that I can only describe as electrified socks. My left arm feels as though only half of it belongs to me and as for taking a pee, some days I can go 15~20 times.

The MDT felt that although symptoms were relevant the ‘shadows’ on the MRI were believed to be scaring from previously uncontrolled high blood pressure. Makes sense I guess but I still have no explanation of the symptoms, it’s so frustrating.

I will raise all of this again with my Neurologist next week.

Thanks once again

steve

Steve

When you go for your appointment, make sure you have written down details of what has happened to you, with some rough dates. Also note down how long symptoms seem to have lasted. And any problems that have not completely resolved.

At least you do have an appointment coming up. You could ask if the MRI could be repeated, in case there are changes or possibly if you could have a lumbar puncture or a visual evoked potentials test. Both of these are diagnostic tools for MS. And if she felt the diagnosis of MS was correct, I would imagine she’ll be happy to do some more testing. I hope so anyway. I suppose it might depend on how much sway the MDT has on what tests she’s permitted to request.

Sue

Sue

Thank you so much

Steve

Good luck with the appointment.

I can identify with you, for being in limbo a long time.

Let us know how you get on, yeh?

pollsx

Your symptoms sound very MS-like to me.

But you are older than most as MS tends to catch folk in their 20s and 30s.

Perhaps that’s why they are unsure.

It took me about 5 years to get diagnosed - patience is a virtue.

Keep us posted - an interesting case.

Fay