frustrated

[whitewolf63]

the neurologist is still saying demylanation disease of the CNS unspecified. my balance is really bad especially on the left. side.ann my eye sight is worse then last year im now both near sighted and far sighted i nt awaycanot drive at night on a street without street lights unless my high beams are on.if their not on i cannot see the road.i am now also diagnosed with aqq abnormel gait.my leg pain i had for four weeks disappered over night. ten started for another  two days  and then went away again. i forgot where i parked my car at the grocery store yesterday a nd i forot i put my lunch box in the pts refcergerater at work last night also

[whitewolf63]

thank you for your answer.yes im a little afraid of whats going on in my body at this time.ill try to be more patient buts its hard not know the diagnosis or better answers,my husband is supporting as much as he can from iraq.we talk back and fourth on skype.he wishes he was home while im going through this.we have been married 26yrs

[whitewolf63]

my daughter and i think this neorologist will keep digging and test as long as my insurence will pay for them. he seem he will stay with me as a patient until he finds out whats going on in my body or gets a diagnosis

[whitewolf63]

the suspcion of ms was found in a mRI of the brain when they thoght i had a mini stroke.but it came back demylanation of the brain bilaterally frontol lobes and bottom of the brain.

[whitewolf63]

im only been seeing hom for three months iveseen him twice he has amother mri of the brain sceduled for sometime in november. Im newly diagnosed with delylamanating disease nenof the brain. so far no legions in my spinal column yet.

[whitewolf63]

no

[whitewolf63]

my job already knows that im  having a CNS problem but so far is does not seen to be effectiing my job yet.im very tired by the end of the week which is unusual for me.they are not treating me a this time or my symptoms. i do not know if in the future thry may be a diagnosis of MS at this time.i have a field person rn that comes to the pt house once every 3 months to check my work.

[Deb61]

I was diagnosed with demyelinating disease six months prior to the MS diagnosis.  It is a bigger umbrella diagnosis that includes MS.  My neuro narrowed down the diagnosis after several lab tests, LP, MRIs, exams, etc. to rule out other disease processes.  Additionally this diagnosis may be made if the neuro isn't sure what type of MS it is.  

I'm pretty sure that there's others on this forum diagnosed with dymelinating disease prior to their MS diagnosis.  If you've been with this neuro for a long time and you get this diagnosis, it's probably time for a second opinion.  If not, I'd stick with him/her for a few more months before moving on.  

However, if you are at your witts end, I'd go to another neuro to save your sanity.  I completely understand the frustration of coming up short of having a diagnosis that will open the door to medications, etc.  Hang in there!

Deb

[Sumanadevii]

There are a lot of diseases that fall under the name of diseases of the CNS,,,one of them being MS.  I wouldn't wait a day longer.  Find another neuro,

[anon07072023]

Does this neurologist have a plan for what they are going to do?  Is there a follow-up planned or any new meds prescribed?  What exactly is demylinating disease of the CNS - unspecified?  Do they think in the future they may make a diagnosis of MS?  What are they going to do to help you?  

So many questions...I'm sure you have the same ones and probably many more.

I hope you find more definitive answers soon.
-Kelly

[jensequitur]

Sounds like it's time to seek a second opinion.  As other people have mentioned, the neurologist doesn't seem to be following the usual procedures for diagnosing MS.  This tells me that even if he manages to diagnose you, you won't be getting the best treatment.

This is really difficult, especially if you're having cognitive problems.  Believe me, I can relate!  It took me three years before I felt well enough to find a better neurologist.

In the meantime, it sounds like you're working in a medical field.  Make sure your employer knows that you're having an unspecified medical difficulty, and that your responsibilities aren't for anything crucial.  Or make sure a coworker checks your work.  I know this is really difficult, especially in today's workforce - if you think it'll threaten your job, you're going to have to make a tough decision.