The lastest and a BIG thank you!!

[grandmalaurie59]

Because of the advice of some of  you...I called the Opthamologist this morning about my 'double vision'. They told me to come in right away.....to make a long story short...she examined me and said I had 6th nerve palsy in my right eye. She called my neurologist (who she personally knew) while I was sitting there ....she told him what she found and he told her what he thought...he thinks I have MS. She does too. Because of this new finding he wants to do another MRI of my brain (to look at the one brainstem lesion again) and a LP. The Opthamologist says to me..."just think...you came in here with no diagnosis and leave with one"
I just want to personally thank everyone for answering my questions and giving me great advice..As you can see it has helped tremendously!!  :)  I will post updates as test results come in..  

Love Laurie  :)

[grandmalaurie59]

Thanks for the info and websites!! you are the best!

Hugs and kisses!  Laurie :)

[supermum_ms]

hmmm 'ever' absolutely yes its possible to recover (RRMS or CIS), you can actually never have another attack too. Have a look at what the national MS society says about CIS....

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/diagnosing-ms/cis/index.aspx

btw brain stem lesions - "Definition: The brain stem is considered the most “primitive” part of the brain, as it controls the involuntary functions crucial to survival, such as breathing, digestion, heart rate and blood circulation. It also controls sexual function and physical growth. It is the part of the brain closest to the spinal cord and is comprised of the the medulla oblongata, the pons, the midbrain, and the reticular formation.
Multiple sclerosis lesions on the brain stem can cause symptoms such as vertigo, double vision (diplopia), facial pain and paralyis and ataxia (unsteady movements and coordination problems). " (ms.about.com)

More hugs...........JJ

[grandmalaurie59]

Thanks JJ.. CIS IS what he called it....I couldn't think of the name. And yes I am very happy/thankful with my neuro!! He really worked hard trying to figure this out and even talked to other doctors/specialists before coming to a decision. I think the visit to the Opthamologist helped him put the final peices together..when she discovered I had 6th nerve palsy. He (my neuro) just happened to be a patient of hers....so she called him while I was there and told him what she found....

I didn't really think I could find out how 'long" my symptoms would last ....just thought it wouldn't hurt to ask :)..... I was more wondering if my symptoms "could ever" go away...

Hugs to you too!   Laurie   :)

[supermum_ms]

Hmmm Laurie, this sure is a good news - bad news story, um not really sure what to say!? so hugs!

He might be calling it CIS (clinical isolated syndrome) due to it being your first attack, and not having more lesion evidence that you've unknowingly had others. I think its more often the radiology report that notes the lesions and the neuro doesnt 'but' we've had a few stories where the neuro found what the radiologist didn't, you've got to love your neuro! ;D  

How long will it last, unfortunately its one of those 'how long is a peice of string' questions, no body really knows. :o(

HUGS..........JJ

[grandmalaurie59]

I had my SSEP test this morning....this afternoon my neurologist called me....He said my SSEP was ok... but explained I have a demyelinating disease most likely MS. He explained everything in great detail and let me ask questions...He has ordered a bunch of blood work to rule out other demyelinating diseases. (Which I had most of the tests done in the hospital last month....and they came back ok) Anyway he wants them done again. He talked about sending me to an MS specialist about maybe starting treatment. He said he will let me know when the blood work comes back.

A NOTE TO EVERYONE: I had 2 brain MRI's done last month. Both radiology reports said normal brain MRI result. My neurologist saw 2 lesions on my brain stem right away (very obvious I might add) he sent my pictures to a neuroradiologist to make sure. The neuroradiologist said immediately...those are demyelination lesions. My neuro asked him if they could be from a stroke or vascular......he said no..he was sure they were from demyelination...then my neuro told him my symptoms and history.
THE MORAL OF THE STORY: don't trust radiology reports! Make sure you have your films/discs read by your neurologist or a neuroradiologist!!

Because this is technically my first attack...he can't put MS in the diagnosis....(he called it something else) he said he is going to put... definate demyelinating disease...

QUESTION: I am feeling better...finally...after feeling horrible for weeks....BUT I still lose my balance (not as much)...my legs and arms still feel weak...I still drop things and I get shaky....DOES this usually go away or will it continue? If it does continue how long does it usually last? ....just wondering :)

Thanks,

Laurie  :)

[Lulu54]

Hi ,Laurie. I think most of us here understand the concept of being 'happy' to get the diagnosis of MS.  It does sound crazy to anyone who hasn't been there. A lot of times the opthamologists are the ones who catch the ON and  start the diagnostic process.

I am so glad you found some good doctors who have kept an open mind .  Keep us filled in on how the next few days unfold and know we're here for you.

best, Lulu

[grandmalaurie59]

thanks everyone for the encouragement!! I am by no means "happy" to be told I probably have MS. But I am VERY happy to get some answers! Just over one month ago I was in the hospital. The on staff neurologist VERY quickly examined me...when I tried to tell him my symptoms...he cut me off and said..  "I have heard enough"  .... said my exam was normal and talked anxiety.... that is before any tests were even done!. 20 years ago when I had similar symptoms...docs treated me like I was crazy....they finally said I had fibromyalgia...I have never gotten answers OR had anyone take me seriously....after a while that messes with your mind....you begin to think everything is in your head...you doubt your own sanity! If I sounded happy...in a way I am! Happy to know I am not crazy or just imaging all these horrible symptoms....I have a good friend I have known for 20years. She has had MS since she was 22yr...now she is 56. she is not doing good...my heart breaks for her. This is a terrible disease...I wouldn't wish this on anyone! I am however thankful there are people out there...like you guys/gals who are helping each other and people like me. I don't feel alone or "crazy"....I am glad to get a diagnosis..or at least close to one...Only people who have been through what we've been through could understand how we could be "happy" to get a diagnosis of MS. When the doctor officially writes down ....DX..Multiple Sclerosis...then I am sure I will freak out....right now I am just happy the puzzle pieces are coming together.

Thanks to all...

Laurie  :)

[Maracamama]

I don't think congrats are quite in order, but I'm glad you are finally getting the answers that you need.  I know all to well how frustrating it can be to not know what is wrong with you.

Laura

[LilMinnie]

Agreed! Not glad about the MS of course yet glad you're getting answers :)

[maxthecat43]

Well, I can't say I'm glad you have MS...  At least now that you have a name for the illness, your doctors can take steps to help you manage it.