WHY IS MY MRI CLEAR? TM MS?

[Udkas]

Hi,
I have been experiencing neurological problems waxing and waning for the past 13 years.  Problems have mainly been of a sensory nature but have included bladder incontinence, leg weakness, like leg has gone to sleep and really heavy, pins and needles, numbness, burning, altered sensation, sensitivity to touch, some muscle twitching, painless and some cramp contractions (tightening painful). Mainly my lower body but I do have some numbness in my hands and my left arm goes all weak and heavy as well, my left leg is worse than my right.

First neuro 13 years ago believed I had MS but MRI was clear, LP was clear, I was told not to rule it out, my neuro believed I met all of the criteria to diagnose MS apart from the lesion/s on MRI so I was told probable MS. I received a repeat MRI 2mths later and then another 12mths later of my brain and spinal cord but all were normal. He then repeated MRI 12mths later again and when that was normal told me that it was most likely not MS but he did believe it was neurological and to come back and see him when I couldn't walk!

So 13 years has passed since then (I am now 43) and most of the time I only had symptoms when I am tired, stressed, or suffering from an illness and nothing seemed to have got worse, but I can't say I ever felt quite right.

Then it all raised it's ugly head again but this time with new symptoms and worsening of old ones. I decided to seek a second opinion and this neuro believed I had an episode of TM 13 years ago, so he did a repeat MRI on a new T3 machine of spine, brain and yep it was normal! So he thought perhaps it was just old stuff from 13 years ago as he didn't have a base line to go by but then 6mths later I had another attack, this time the neuro agreed with me that I had got worse and that there were new findings on neuro exam. I also this time round had migraine headaches and neck stiffness and lower back pain as initially I thought I had hurt my back but the prickly sensation in my abdomen was driving me insane.

The dr found Clear sensory line below thoracic, hyperreflexia, clonus, think that was there before. So yet again another MRI just of cervical and thoracic and yep they were normal.  Now he is ordering bloodwork, LP and MRI with Gad but from my readings there will be no advantage to the GAD as my attack was in September and I am fine now,well as good as I am going to get I think, but I don't think I am in a flare now,  but I do still have numbness in my pubic/groin/private area which bothers me.  My new neuro believes I have TM and now perhaps reoccuring TM, i think he is testing for Lupus and other things now.

Will there be any advantage of GAD? What type of disease can Gad identify? I thought Gad was only advantageous in a flare or when there were lesions to enhance.

Why is NOTHING showing up on my MRI?  

Can my lesions if there are any be in the grey matter?

Any other theories on what this could be?

[Udkas]

Hi,
thank you, it is good to vent!  I guess I feel so FRUSTRATED but I know I am not alone on this forum and I do have a good neuro who is not dismissing my symptoms and still believes it's TM but I am also confused how he can be so certain I don't have brain lesions as well. This MRI will be of Cervical and Thoracic only and it will be next week and my LP will be week after but I'm almost afraid to do these tests now as I will be so annoyed if they are clear, I want evidence and answers I have had a lot of MRIs.

Good luck Doni with your MRI and neuro visit.  In Australia our General Dr was not allowed to order MRI, so you have to see a neuro first.

Seeing as the post is here whats everyones thoughts on the Gad?

[buriedinfur]

I hear you hun. My LP just came back clear, MRI just shows those lovely UBO's so neuro has said no MS which is a relief.

However...ok...what's going on then. LOL That's always the trick isn't it? It's frusterating not knowing and being in permenant no man's land.

At least here we can get support and understanding about the troublesome symptoms even though we don't have 'the label'. So that's awesome. I'm planning on hanging out and reading here because no other community really understands all of what is going on for me.

[sllowe]

Udkas - Don't be sorry, this was a good recap!
I don't know durrnit!!!!
But, maybe this refresher will be helpful to our masses.  

Doni - Girl you are going for that spinal whether you are afraid or not - 09 is your year baby!!!!!!!!!!! xoxoxo - me

Shell

[doni54]

Hi Udkas,

I'm gonna answer you anyway....hahaha

I'm right there with you and have all your same questions.  I haven't had a spine MRI, but my brain MRI was clear.

I have eye problems, cog problems, spasms, numbness, can barely walk, etc., and I just don't understand.  I will have my first neuro appt on the 14th, and see what he says.

I have looked at many other things besides MS and anytime anyone here gets dx with one of the mimics I check the symptoms against mine.  Still not any answers.

I don't know how we can be having all these symptoms and the tests be clear, it's really hard to deal with.

I am almost afraid to go to the neuro and be told nothing is wrong, or finally have the spine MRI and it turn out clear too.

Like I say, I'm here with you Udkas, as many others are too.  Don't give up, and I won't either, we'll just lean on each other until we get some answers.

Take care,
doni

[Udkas]

Hey I am sorry I meant to post this somewhere else. Opps, you have heard all this before......I am so sorry, I tried to get rid of it but didn't know how!