Unremarkable MRI?? What now?

[woven and spun]

Hello - I am new here. I need help and encouragement coping with the uncertainty and the road to finding out what is wrong.

I went to neuro after many months of pain in my hands and feet. Overall weakness and fatigue. It has progressed to the point that I need a cart to walk with when I go to a store, and each day I have about 3 hours of low energy before I just bottom out to no energy at all. I have numbness at times in my feet and hands along with blurry vision and neck and back pain.
My primary doc put me on neurontin and nortryptiline to help with the pain, it helps some, but still have pain and the meds cause an increase in fatigue. I have my husband drive me to work on the days I am too dizzy to drive.
The neuro doc ordered an MRI brain and c spine. She noted 3-4 beat clonus and bilateral hoffman's sign, and parasthesias. I saw my optometrist a couple of months prior to this, who increased my prescription and put me on ristasis for dry eyes.

The nurse called and said the MRI was "pretty much unremarkable" and that the neuro would go over it in more detail at my next appointment which is in one month. I am just stunned and don't know if it is possible to have MS w/o lesions? Not sure what else there is to go over, I will probably need to get a copy of that MRI reading.

I am not sure if they MRI was done on a 1.5T or a 3T MRI machine, I know there is some controversy over that. I have had a lot of labs, all came back normal.

What next? I am living with this and it has caused me to miss work, most of the time I have been going in feeling sick, but it is getting harder and harder to suck it up and go on like I am not weak, fatigued, and having pain.

Any thoughts from those of you who have gone through this are appreciated. Thought about going to Mayo, would they work through this any faster??

[lynng1776]

MRI what now?

I was dx in 1991. All my tests were and still are negative. I have had 4 exacerbations since the initial attack. Each attack leaving a new symptom. I met this dr. An older fellow and very experienced neuro. He told me you can have no lesions for years, but one day there will probably be some. In 1991 it was called a clinical dx due to symptoms and ruling out everything else. If you have ruled out everything else then . . .

[ejonesbowlie]

My 2 cents...

Well, I was just recently diagnosed and the MRI that my first neuro ordered came back with "nothing indicating ms"...later found out that the MRI was done incorrectly. However, I was then sent to have a lumbar puncture and that did come back positive for MS. So, I would think if your neuro strongly suspects MS (meaning most all other mimics have been ruled out) then they would send you to get a lumbar puncture as the next step.

I just know that my first neuro was not very good I ended up seeing an MS Specialist and they re did my MRI and found lesions. They must follow the "MS Protocol" and I think some of the more inexperienced general neuro's miss this...not all...but in my case, mine missed it.

So my advice would be to seek out an MS Specialist. They should be able to rule in or rule out MS as most of them have likely seen a bit of everything.

I wish you the best as it is no fun living with unexplained symptoms

[aspen]

Woven and Spun ... first ... I LOVE your user name .

So sorry you are going through this. I'm in limbo as well and I understand your feelings right now.

There are many, many ms mimics and there is a reasonable chance you have a mimic. Or as Lynn suggested, lesions could show up later. I've had boatloads of blood work done (repeatedly), I've seen specialists to rule out other causes for symptoms I've had during flares, I've seen a psychiatrist to rule out mental health issues.

When tests are clear, it can be a long process, no matter who you see. My neuro is cautious, and I believe most are these days -- the DMT's have significant side effects and they want to minimize wrong ms diagnoses. With a wrong diagnosis, the DMT's can worsen the real issue, not to mention the real issue goes untreated. It's very complicated, unless your MRI's scream MS.

Personally I would follow up with your neurologist and see what he has to say. I expect, if no one has already, he will start looking for mimics. If he feels it is not CNS he may suggest a referral to a different specialist.

This is a great place to come for support, and there is a chat on Wednesday nights @ 8 p.m. EST called Patiently Waiting for those of us stuck in limbo land. Come join us . It helps to hang with those in a similar situation.

Hang in there.