Still in limbo!

Hi all,

Its me again with an update!

My b12 blood test result came back…well within normal parameters!!!

So all my hopes i had pinned on getting a few b12 shots and it all going away have majorly crashed to the floor!

Little confused and depressed now!

I guess my neuro report said she thinks its transverse myelitis but then why refer me to MS neuro and she not caring on with me?

Can you have a clear MRI and no results from any other test and still have MS???

Am i nuts and there is nothing actually wrong with me?

What are they going to do with me now?

Its 6 months today, since onset of symptoms and apart from buzzing, vibrating and terrible tremors (now its only mild) I still have symptoms…is it ever going to go away?

Am i ever going to get answers?

Am i reallysick or is it in my head? (i am starting to worry that i actually have made myself cause all these symptoms and i need to be on some anti-phsychotic drugs or something?

Sorry to be so miserable and self doubting…have a really bad week!

Father in law in hospital with early dementia and hubby is really struggling, thought i could really do with some good luck and find an easy fix out of all this limbo madness. Guess i am back to waiting and have to dig out my old list of questions and answers for this new neuro!

God i am soooo fed up today !

Sorry guys…big hugs if you have been patient enough to keep reading lol

Lea xxxx

Sending you a big hug love.


Limbo is a horrible place to be…I am a well known local here!

luv Pollx

ps I doubt you are mad, as you say, just looking for answers to a body that won`t behave, eh?

Hi Leamills

Is it possible to have MS with a normal MRI - the answer is yes though the chances are less (I think something like 5%). I think also some people go on to develop lesions with time on their MRI.

I can only talk from my experience but - My MRI is near normal (non-specific sub-cortical lesions not consistent with MS) twice, my neuro exam is almost normal (some reduced pin prick) and I have seen two neuro’s one an MS specialist who felt I’d had an episode of spinal inflammation but didn’t think it was MS and another general neuro who I saw for a second opinion (as the first one didn’t help with symptoms or explain) who said despite my almost normal findings did think my symptoms sounded like MS and has said central nervous system inflammation and referred me to another MS specialist.

Crazy huh - I’ve gone in a complete circle back to an MS specialist.

So I guess it depends on how reliable the neuro thinks you are. My neuro thankfully has said he doesn’t think it’s anxiety or depression I seem happy were his words. The neuro may consider whether there are any other causes that can be suggested and lastly time. He said even though it sounds like MS they can’t just diagnose - they have to very careful and be certain because it’s a serious label to give someone if you’re wrong without any evidence. So at the moment I have another review in 3 months and a plan to see the MS specialist at some point. Then a repeat MRI at some point. But I guess time is the big factor.

It sounds like you’ve had one epsiode of symptoms so there is a chance of it being as once off and you never having something new develop again. I’ve had a few epsiodes since the one that ended up with me being referred so a once off episode doesn’t seem to be in the equation. Lastly recovery can take anything from 6 months to 2 years. Sometimes things can go back to normal sometimes they don’t and we have to adapt and reinvent ourselves to cope with this new us.

Hope that helps and answers some of your questions and reassures you that you’re not alone with this dilema.

Good luck