Help - MS possible or cervical problem

[erichotz]

36 yrs old - white male (CO)- I have been having symptoms going on 1 yr. of the following.
3 years ago - Vertigo followed by tinnitus (still have ringing)
muscle twitches - cause my joints to move on ocassion (hand flexion - arm moving from shoulder down, legs jump on occassion) (twithces counted on several ocassions - average of 200 /hr.)  and spasms (very bad in my forearms lately), tremors in hand (much worse in specific positions - my whole arm twitches and shakes uncontrollably), extreme fatigue (much worse as the day progresses, flu like feeling many days, numbness in face and above right knee (now gone), buzzing in legs, tightness in knees (banding?), severe headaches that wake me form my sleep (started in the rear of the head, now in the front - behind my eyes), dysphagia (no results from test yet - solid foods get stuck), recently my right arm has a pins & needles feeling constantly and i have an electical shock feeling down my spine and arm when moving my head (makes me drop objects on occassion), left leg has felt very weak over the past 7 days.
Tests - 2 brain MRIs - both normal although the most recent MRI showed what the neuroradiologist called a leaky vein in the cerebellum (perfectly rounf circle shown with & w/o contrast), cervical MRI showing moderate spinal compression C5-C6, normal electrical tests and normal blood work, spinal tap showed all normal except basic proteins of 85 (should be around 42 for my age) and moderate elevation of the brain/blood barrier.
Neurologist says probably not MS due to MRIs - he is refering me to a neurosurgeon - HELP!

[heypaula]

You need to have your doctor do MRI of your head and neck area and tell them to look for Arnold Chiari Malformation and Syringomyelia. I have those same symptoms and found out I had this only by being persistent with my PCP and demanding an MRI. You can read more about these two diseases on www.asap.org. Please keep asking your doctor for help until they find out what is causing your symptoms.

[weeeeeble]

did your spinal tap show any Ig banding?  i also had elevated proteins but MS specialist said that was the thing to look for to diagnose MS

[erichotz]

Thanks for the input - already tested negative for Lyme's.

[S.B.]

You have a tick's desease, probably Lyme Desease. Check it out by Elisa or Western blot tests.
S.B.

[CCF-Neuro-M.D.-CS]

Your constellation of symptoms is unusual and hard to put together into one possible diagnosis.

Your problem would seem to localize to the brainstem or upper spinal cord. There are possible causes such as a syrinx (cavity in the center), brainstem encephalitis or growths, various degenerative diseases, or arteriovenous malformations in these areas - but I cannot tell without seeing you or your MRIs

Certainly a good MRI of the head and neck will exclude many of the above causes. The good thing is that most of your tests are normal, and that is does not seem to be a tumor, MS etc. Did they check for Lyme disease? or for abnormal cells in the spinal fluid? or tests for sarcoid? It might be worth asking for a HIV test as this could be a remote possibility (but unlikely with the above normal tests, I don't want to alarm you). Repeating the CSF at some point might be useful to see which way the protein is going.

Hopefully your doctors will be able to pinpoint the cause. It would be fair to seek a second opinion at a large center if you still don't have a diagnosis.
Good luck

[amandae]

A lot of what you're experiencing really sounds like MS.  I was diagnosed with MS less than two years ago and have immersed myself in learning about it.  Just because your MRI's are not showing lesions at the moment, does not mean that you for sure do not have MS.  Yes, MRI's are the main way to help get a MS diagnosis, but that is why there are other tests that help get a diagnosis.  I would definitely go out there and get yet a third opinion.  I've also had a spinal tap and the fact that you had higher levels of protein in your spinal fluid is an indication of MS.

Symptoms that I know for sure can be related to MS that you said you have experienced: vertigo, spasms, tremors, extreme fatigue, numbness, tightness, problems swallowing, pins and needles feeling, and muscle weakness.

I wish you the best in getting this figured out.  Don't give up until you have an answer!  I would recommend trying to find a Neurologist who actually specializes in MS because I learned that just because they're a Neurologist doesn't mean they know a lot about MS.  Good luck!