still waiting!!!

[wendyd]

Hello All,I have been having Ms symptoms since96'but did know what was going on,sept.06 brought me to the Dr.with a blinding pain behind left eye,and my face felt like it was on fire(this and balance issues have gone on since96',the family doc would take my temp say no fever and on I would go)looking back I can see many health issues that probably have to do with MS,Nov.06 I saw Neuro,who did eeg(said there was a problem with it)sent me for a CT scan(it showed nothing)then I was booked for a MRI,had that in Feb.went to see Neuro for results(new Neuro,old one moved)and this one said there was no lesions,although he did not have actual mri,just a written report,now he is sending me for another MRI,this one of the spine,no contrast was used on the first one,does that make a difference?What do you do when you have new symptoms or something changes,Iam getting severe spasms in my feet and legs,my right arm is killing me and the pain that used to be only in the left eye is now in the right,my family Dr.says he doesnt know anything about MS(this did not make me feel good)and is not helpful,my old family dr.is semi retired,but is very supportive,is it time to seek another Dr.? and when do you go to Emerg?the spasms last night made me wild,I would rather have a baby than go through that again!!!and how long did all the testing take?this seems to be taking forever!!Thanks any info would be helpful!!

[sherma]

When I ws dx with MS 7 years ago now they used no gadolinium - wasn't available then but the lesions showed up anyway.  The contrast agent just shows whether or not the lesions that you have are active or not.  I had an MRI on Thursday and refused the contrast agent because of the side effects.

Time to find another Doctor or go straight to a neuro.  The dx of MS (in my case) took only a 2 weeks with all the testing.  My neuro gave me a full exam in his office and wrote to my local Doctor with the dx of MS before I even had the MRI.  Find a good neuro.

[wendyd]

Hi Pearl,thanks for your reply,I really hope your son is doing well!! what was the final outcome?Thanks again,Wendy

[Pearl99]

My son had (relatively) sudden loss of vision (no pain).

They had him do an MRI with and without contrast to see if there were lesions. It was my impression the dye was really important and there was no point doing it without it (I tried to get out of it because he is very allergic).

The MRI was read by the neurological MRI MD.  There were tiny irregular areas and so step2 was to see a pediatric neurologist who specialized in MS and in demylenation of any kind. He did the full neuro screening (mostly reflexes etc). He also did $7000 worth of lab tests for other possibilities (like lupus etc.) TG for insurance. The results were able to rule out MS.  They were also of course looking to rule out a brain tumor which they did.

Eye symptoms with loss of vision I understand are how over half cases are found--it causes optic neuritis--this would show up on an MRI.

If I were you I'd find a specialist---we looked online and then flew several thousand miles.  We have great insurance but obviously had to pay to get to specialist. In my town which is tiny and isolated a pediatric neurologist comes through (like in the days of covered wagons) only every couple of months!

Once we saw specialists (CHildren's Hospital, Boston)--we felt much better and like they were very thorough.