not sure of a diagnosis...

[denise02]

hi, my name is denise and i appreciate all that you do for all of us needing answers.  i am sorry about the length of this but i dont want to forget anything.
7 years ago i had fatigue, fever, numbness and other symptoms that to be honest i dont remember.  lasted about 6 months and went away when i gor pregnant with my second child.
november 2000 i had severe headache starting in neck moving up into my eyes as if someone was stabbing me from the inside. numbness, fatigue, trembeling, lost strength in my legs and arms, cement leg feeling, blurred vision and my left leg went out on me while i was just standing in the kitchen, as well as several other things. my pcp sent me to a neuro. had mris of brain and spine, lp, and evoked potential tests.  the mris showed them that this was something to do with my spine. no herniated discs, pinched nerves etc. brain mri showed spots that could be lesions? not sure what that meant. lp came back with elevated wbc.
my exam went like this: cranial nerves show visual acuity of 20/25 on right and 20/30 on left. balance of cranial nerve is intact. romgerg positive. seems to be a nervous woman.  formal motor exam shows give way weakness with tremor. sensory exam shows decrease invibration in left hand. reflexes are brisk throughout at 4/4. toes appear to be bilaterally upgoing. tone is not increased and there seems to be bilateral clonus.
i was dxed with transverse myelitis.
that went away in march of this year. i was feeling 100%again until mid may. my left side went numb as if i was wearing a wet suit. i can feel the touch just not like normal.i have vertigo, trembeling, forgetfullness, i can be in mid sentance and forget waht i am saying or just skip along into something else. frequent urination and from what my neuro says its because the demyelination has effected my bladder and i am not emptying all the time. i lost periphial vision in left eye for about 30 minutes or so. both times i have been dxed with spacticity, nystagmus, and clonus with positive babinski, lhermites and romberg.
my neuro that i am seeing now for this episode is going to start me on iv steroid tomorrow for 3 days on 1 off and 2 days on. i have been tested for lupos, aids, all other things and negative.
he again has given me a dx of myelitis. not transverse myelitis just myelitis this time. he stated that i may have silent lesions in brain and we cant see them so he will treat me as if i have ms, hence the zanaflex and steroids.
my main concern is if this is in fact ms i want to begin the abc drugs as i have read several articles stating that the use of them at the onset will greatly reduce your chances of attacks.
if you would please give me your opinion i would appreciate it. the nurse at the neuros office told me that part of the problem of dxing ms is that the insurance companies dont want to pay for the drugs and i also have heard that the ann is about to change the standards in dxing ms.
i ramble alot and i am sorry, i am just anxious to find answers.
the wait and see game is not a fun one and i feel for all of the many people who had to go through it.
take care and thank you again for your assistance.
have a great day!
God bless you,
denise

[GMP]

Have you had a test for Lyme Disease? It is possible the "flu" you had years ago was an initial reaction. It is documented to have remained latent and reappear later. Please educate yourself about it. The tests are unreliable and treatment controvercial. Many people never see any rash and it can cause brain lesions. Good luck.

[Amy]

Try 9 a.m. EST.  That seems to be the best time.

[KRL]

When is the best time to post a question?  I am on the West Coast.
Thanks

[denise02]

thank you for your reply.  they did not find bands in my spinal. my neuro did state that they took it when i was not having an attack and if he were to take it now my wbc would most likely be up by 30 more?  i am not sure if he thinks it is ms or not. i know that he said that is what he is going to treat me as but has officialy dxed me with myelitis.
it is going to be tougher to get a diagnosis?  is that possible? haha can you tell i am a bit synical at this point. my husband wants me to go to the cleaveland clinic to see what they think i just hate to spend the money.  who knows? thank you again for your help.
God bless you,
denise

[Amy]

Spend the money, and get this resolved.  You have small children that need their Mother.  Good Luck, and God Bless.

[AMO]

Dear Denise,
This time of uncertainty can be very hard and long, but consider it a blessing. Some of the best advise I have gotten is to take this time to get some of your finances and legal papers in  order- re: insurances- health and life! I too was looking for a quick diagnoses and maybe regretful in doing so. There are alot of diseases that are not fatal but the insurance companies do not look at it that way. Over and over again I have heard from people that once they had their MS diagnosed they were unable to increasae their life insurance. So this really can be a blessing in diguise!
Take care and have faith,
AMO

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

Dear Denise:

Sorry that you are having symptoms that you describe.  What you describe certainly sounds like it might be MS.  Did they check for oligoclonal bands in the CSF?  Where there different aged lesions in the white matter?  Transverse myelitis can be part of the MS picture, especially with those with spinal cord involvement with their MS.  This would be especially true with a diagnosis of visual symptoms and transverse myelitis-Devic's syndrome.  I would suggest getting a second opinion.  Yes, there is talk that the bodies that be are changing the criteria for diagnosing MS.  It will be much more difficult to make the diagnosis unless you have classical MS or have progressed along the pathway for awhile.  I think they are doing this to make the population of study more homogeneous.

Sincerely,

CCF Neuro MD