MS? With no lesions or oconal bands?

[Tebbie]

I was diagnosed 5 years ago with MS, however this past July a new neurologist informed me that since I had no lesions in the brain or spine and the spinal fluid was clear, that there in no way possible that I ever had MS. I have had multiple bouts of Optic Neuritis resulting in loss of peripherial vision. I have extreme balance issues. I have memory loss, TMJ, I tire easily. I have tremors that go wild when I get very cold. I have speach difficulties, deep muscle pain, muscle spasms, loss of concentration, forgetfulness, prickly feelings from the bottoms of my feet on up into my hands. I have difficulty picking up small objects, bladder control problems and heat saps my energy to zero. And my toes move up and down all by their selves!
My question: Is it possible to have MS, even if the MRI & spinal tap say nothing? If not MS what should my Doctor be looking for? Please help me, I am at the end of my rope.

[Tebbie]

Can you help?

[Carol in PA]

I'm not a doctor, but I recognize your symptoms.
You may have an underlying infection that has affected your nerves, such as a tick borne infection.
Many people who were first diagnosed with Multiple Sclerosis were later found to be infected with Lyme Disease.

Carol

[Tebbie]

Lyme test was negative. Any other suggestions?
Tebbie

[Carol in PA]

There are many strains of Lyme, but labs only have tests for one or two.
The first Lyme test that doctors order, the ELISA, has been shown to be so inaccurate that it misses more than half of known Lyme cases.
The Western Blot test is better, but it too is not accurate.

Lyme disease is diagnosed by the patient's symptoms.
This is known as a "clinical diagnosis."
Most physicians will order the test, and if it's negative, tell the patient that he doesn't have Lyme.
This is one reason that so many Lyme patients go for years and years before someone figures out their problem.

For information on tick borne infections, see The Canadian Lyme Foundation, at canlyme dot com.  They have an excellent symptoms list.
http://www.canlyme.com/

Carol

[Tebbie]

I had no idea that there was more than one test. Where do I get the Western Blot test done? Is it a blood test?
Thanks for helping,
Tebbie

[Robbie74]

Tebbie,

I am in a very similar situation with four severe relapses in under two years, including partial paralysis in my third relapse.  I have not worked in almost 5 months and my quality of life has suffered enormously.

There are different schools of thought as to whether there can be a diagnosis of MS without the presence of lesions.  Many of the more progressive doctors who are quite active in research and clinical trials, firmly believe this is possible and strongly encourage the use of DMD's if quality of life cannot be restored.   I am consistently hearing that Copaxone is the best choice of DMD's for people in our situation.

For what it's worth, my mother also has MS but did not show bands or lesions for many years.  

I have consulted with two Ivy League educated doctors, one sitting on the National MS Board, the other running the MS Center in a major metropolitan city.  I will be consulting a third and final doctor (also with stellar qualifications) in two weeks to help me make the lifelong decision of taking DMD's.  The only reason I am consulting so many doctors is that I plan on having children in the next couple of years and want every assurance I can get that I am making the right decision.

Personally, I would recommend you go and get another opinion!!  Best of luck to you...