newbie...confused???

[bettyboop98]

hello everyone,
i'm new here and have not been dx yet but been seeing a nuero for over 6 years now telling him something is wrong with me..this is my story...it all started with bad headache with they say is migrages thats i get all the times now.. had mri showed some lesions but nero said i was 2 lesions short of ms disionged so he will wait...they gave me tomapax for this 200mg /day now then came the double vision onleft eye and off for 6 years now with it staying now...now the numbness and tingling of left side of arm and leg pain and burning..feels like my leg is burning inside on firer and i can't do anything to help it.,.it hurts bad,,went the other day to my doctor who said its ms to call my nuero for more testing..well now my nero tested
emg/ncs test shows dysesthesia on my left leg... am taking another mri on wednesday and my neuro will tell me more about all result on the 17th of this month.. but untill then i hurt really bad and going thru hell and don't know what to do anymore and ended up here and found this group of people to vent too..sorry for the spelling my brain can't seem to focus right much latly..

[0485c10]

what kind of mri are you getting? brain, cervical spine, thoracic spine with and without contrast dye and what strength is the mri that you will be getting the mri on.

newer mri's are 3.0 telsa and i know of at least one person who did not have ms diagnosed until a newer 3.0 telsa mri showed lesions that the standar 1.5 telsa strengh mri did not show.

the newer 3.0 telsa mri machines have only been out for about 5 years they are available now in larger cities or cities with a teaching hospital in them.

the standard tunnel type mri have a magnet strength of 1.5 telsa

and the open mri's have a strength of 0.75 telsa and are not recommended for ms mri's.

there is a ...if you scroll down it list's 6 things recommened for ms mri's including setting the slice paramaters.

http://www.medhelp.org/tags/health_p...-MRI?hp_id=161

you night have to drive to another city to get to a 3.0 telsa mri machine but it might be worth you effort.

and this recommendation for the mri when 3.0 not available...


http://www.mscare.org/cmsc/images/pd...otocol2009.pdf

[salamandertom]

I would ask to see a MS specialist. Period.

I saw a neuro office for a year being treated with migraines after a week long hospitalization in '09. The MRI then showed lesions (at least six - I think 7 or 8). They said they were consistant with migraine and I never thought about them again.

Thanksgiving 2010 I wake up with Optic Neuritis. It takes almost a week for the diagnosis. Stupid neuro at my office is not convinced it is ON even though opthamologist said it was - b/c MRI didn't SHOW it. LOL, it is a CLINICAL diagnosis. If I only knew THEN what I know now. Anyhow, by this point I am loosing feeling in my right leg and starting to have funny neuro stuff. She decides 100 mg a day ORAL pred. I end up in ER with tachycardia. Back at neuro she admits me and decides for solumedrol. I ask about MS b/c ER doc was speechless noone else had brought it up and that I was on oral pred to begin with - she doesn't think it is MS at all but agrees to send to MS specialist and neuro-opth. THANK GOODNESS.

While admitted many hospitalists talk to me about MS. The neuro on rounds talks to me about MS and my lesions. When I see the specialist HE tells me that I likely have MS. I have the spinal and guess what - I have MS. The specialist did tell me I was a bit confusing b/c of the long history of migraine though. The lesions were consistant with both migraine and MS.

You need a fresh set of eyes and another perspective. I am surprised you have not had a VEP. Good luck!!!

[bettyboop98]

my lab slip states :

MRI cervical with and without contrast
assessment:multiple scierosis
MRI Brain with and without contrast

thats all is states...???? so confused

[heliotrope]

Find a new neuro. Fast. "2 lesions short of MS" = what? If he's diagnosing you with CIS, he should still be treating the symptoms. He shouldn't be doing wait and see.


BTW, here's a link for the diagnostic criteria: http://www.nationalmssociety.org/abo...-ms/index.aspx

If you're having eye problems, it's worth an additional visit to the eye doctor. Most neuros are pretty clueless and you'll get referred eventually anyway.

[0485c10]

I'm just thinking you have an mri scheduled in 3 more days---i'm not certain you should waste that...might take a few months to get into an ms specialist--you could parallel path things. find an make an appointment with an ms speciailst & get the mri to see what that says now.

[bettyboop98]

thank you all for your help , i will keep my mri appointment to see what turns up (how many more lesion he see's now)and then see my nuero on the 17th of march to see what he has to say about all the testing done ...if nothing comes out of this i'm off to a ms speciailst with all my records ...like you all say because i just can't handle this anymore

[hunterd]

first, WELCOME!!!!!!!!!
definatly keep the mri appt. find a specialist too. and a word of wisdom (maybe), don`t get caught up in the what ifs. tomorrow is going to happen no matter what, live your life and do what you want, when you want. good luck.


dave

[Lendi]

I too had horrible migraines adn was trying to talk my neuro into my lesions being from the migraines instead of MS. LOL A bit of denial on my part.

Anyway, what I'm getting at is that they can tell some difference between migraine lesions and MS lesions sometimes. He told me that only one lesion really defined me as having MS but that it was a definite. (I had 8 which were small and fairly inconclusivly at the time. It was the location it was in and that only MS would cause it there. All my other tests came back as normal although I didn't have a spinal tap. That was 6 yrs ago.

Hang in there and continue to be persistant. Wishing you the worlds of luck in getting the right DX for you.