Going downhill fast with no idea why!

[Shashi11962]

For the past two years, I have had a multitude of weird symptoms. It started with tremors and extreme fatigue, then progressed to numbness and tingling in various areas; buzzing sensations; shooting and burning nerve pains, weakness in my left leg and now throughout my body; severe muscle spasms and stiffness in my legs, arms, back, and now my around my ribcage; cognitive and memory problems; poor balance; slured speech; vision problems; myoclonic jerks of my hands and arms; etc.  Also, heat makes my symptoms worse to the point that my vision is blurry and I'm weak for hours afterwards.  I can't even take a hot shower or bath anymore.  I've also had three very distinct exacerbations over the past two years.  In fact, I'm in one now.  And it's gotten so bad over the last year that I now walk with a cane.  

I'm seeing an MS specialist, but all of the MRIs on my brain and spine have been normal, as was my lumbar puncture two years ago.  The only abnormal tests I've had are the SSER on my left leg which showed a delay in the nerve signal originating in my CNS, and my neuro exam which includes a present Babinski reflex in my left foot.  I've also been tested for all of the MS-mimics and all were negative.

My primary care physician feels that this is definitely MS. How can this be MS though when my tests are normal? I'm so confused and I need answers.  I'm going downhill and desperately need something to stop or slow down this progression. (I'm currently taking medications for my symptoms only.)

[Shashi11962]

Yes, I have been tested for Lyme and every other MS mimic by the MS specialist I've been seeing for the past two years.

This is all very frustrating because I just keep getting worse and worse and need something to stop whatever this is. I'm only 45, and I have a lot of things I want and need to do.

[patsy10]

Have you been tested for lyme disease?  I think seeing an MS specialist is a very good idea.

[Shashi11962]

Can anyone help me?  Please?

[Shashi11962]

Hi,

I'm taking 60 mg. of baclofen a day for the muscle spasticity/spasms, 600 mg. daily of Neurontin for the nerve pain and tinnitus, and 20 mg of omeprazole for nerve-related gastric reflux.  My baclofen dosage has doubled in the last year, and still barely controls the pain from the muscle spasms.  

My doctor has also given me Provigil and Cymbalta for the fatigue, but neither of them help at all.

I also take potassium and Vitamin B suppliments, among others.

Lisa

[tinman_sn]

what medications are you taking if you dont mind me asking?