Went to JHHS today, not MS

[moeck]

I had my appointment at JHHS today. Between reviewing my mri and test results, taking a history and doing his own testing the appointment over an hour and a half, complete with my falling during the balance test.  He said that the brain lesions were not charateristic of MS and that he felt they were part of the aging process but he will be doing some follow up mri's to check for changes.
He did diagnos me with severe cervical myelopathy.  He said it accounted for every symptom from my stiff neck and headaches to the parathesia, spasms and tremors.  He feels that it has been slowly occuring since my symptoms a year ago and that there is permenant spinal cord damage.  The cervecial fusion releived the symptoms for a while but now they are back worse than before the surgery. When I go back again (in six weeks) he wants me to bring all of my pre-surgery mri's and test results I can find so he can see how much cord compression I had before.
He is starting me on Baclafen.  Since baclafen is an MS drug and the myelopathy is a demylinization disorder in the cord I feel like I have MS's little sister.
He told me not to let the surgeons try and relieve any more pressure as they will only make things worse.
So, I have a diagnosis that from my research can be degenerative and debilitating,besides damn painful.  So which board do I hang out in now:-)
Moeck

[Quixotic1]

Ours.  We already love you and you have a "little sister mimic" of MS.  So you will have a lot to talk to those who come (and we have some new ones now) with suggestive symptoms and back problems.  Besides, all those back people over there do is complain.

Settled?  I'm glad it's not MS.  My Mom has what you have.  Her cervical cord was compressed into a thin crescent when they caught it in 1997.  She can't feel her legs but trudges around just fine at 84.

Quix

[grannyhotwheels]

My first diagnosis was cervical myelopathy and the MS neuro spec. said that you can't have just CM it has to be caused by something.  Something like MS or Lyme Disease.  He said that CM was not a disease in itself.  So who do you believe?  

I think that MS is the most misunderstood and craziest disease there is.  How about it?  Ya'll agree?

Carol

[monotreme]

YES, YES, and YES again to your comment on MS being mis-understood!!!!!

Moeck, good luck and I hope the Baclofen works..
Craig

[moeck]

The neuro said that we may never learn the cause.  He wants all my pre-surgical films to see if it was possibly mechanical or if a spinal lesion was missed.  He also said that even with the CTS I will probably not regain the full use of my right hand to instrumental playing standard and with it affecting my balance riding is out as well. (along with treadmills and bikes-stationary or otherwise)
moeck

[moeck]

Interesting google tidbit.  Some breeds of dogs, predominatly German Shephards, have a degenerative spinal myelopathy that is auto-immune in nature and has been compared to MS in people.  I always could be a b*i*t*c*h when i want to be.  food for thought
moeck

[Quixotic1]

Guys, I totally missed the "diagnosis" of  supossed cervical myelopathy.  Myelopathy means the disease (pathy) of the myelo (white matter).  The disc protrusion is not causing a myelopathy.  CAROL IS RIGHT ON TARGET!!!!!

'my bad!

Moeck, you are still missing a diagnosis.  And, I'm sick of hearing the prediction. "I'll probably never be able to figure out what it is."  2nd, 3rd opinion time??

Q

[moeck]

I have a return visit in six weeks.  I'll be going in armed with a new list of questions.  Despite his saying it was CM he was much better than my first neuro who said it was all mechanical and needed only a surgeon to treat.  This doc admits it's a white matter disease.  He said that he was willing to bet that no neuro tests were done once the discs were found and that something had been missed.  Now that I know CM is a symptom, I will be able to spend this time learning what specefic questions to ask him.
Funny thing, while in the waiting room I was looking at some neuro magazines that were there.  Stuff geared towards patients, and there was an article in one stating that CM, with no obvious cause is being accepted as a diagnosis now and treated with meds such as bacolfen instead of valium and narcotics as the muscle spasams and tremors are arising from problems with the nerves and not from the muscles themselves.
moeck