MRI next week

[PurpleTulips]

Hi, I haven't posted in here for a few years. I have no dx. I have had MS-type sx for 3 yrs on and off. Then nothing for 2 years, which I thought was due to a wheat/fructose/lactose free diet. Now I have sx again, and keeping to my diet. Dr has said to have a brain & spine MRI asap while I have sx. I know there's a possibility it's MS. My question is if I had a 'probable' dx or it wasn't clear, do I have to wait until I get a proper dx to start taking meds? My Dr said it's best to go on meds asap. (She said she'll send me to a neuro if the MRI is positive). Thanks. (Female 42)

[Lazarus]

All understandable questions...

I was diagnosed in 1990 when there were no meds at all specifically for MS. The doctor who gave me the diagnosis gave me that diagnosis and told me to go home and that was that! I left his office not even knowing what MS was.
Soon after that, Betaseron came on the market and I was lucky to win a national lottery to be among the first patients to start.

You can see that I started looking for medical help from the beginning. The interferons may or may not slow progression. I took the chance. You would never know if it slowed your individual progression so the gamble is clear. Since that time I have been willing to try new meds whenever it was called for...so the list has become long. I am now doing rituxan which works wonderfully for me. All my meds have kept me active and functioning. I stopped teaching 10 years ago but have continued farming.

It is amazing how much I can do with shaking hands and legs...and a muddled brain! My story is a long journey of fighting and winning. Good luck to you as you choose the road to ravel.

[agate]

Hi PurpleTulips, and welcome--or welcome back?

Good luck with the MRI. I hope it won't show MS, but if there are suspicious lesions or other indications of MS, the doctors do seem to want people on one of the MS drugs ASAP. They are more effective if started early, or at least that's what the studies are showing.

There's the "clinically isolated syndrome" or CIS--just one MS episode--and even for patients with CIS, the MS drugs are now being recommended.

I agree with Linda that it's amazing how much a person can do with MS.

[Cherie]

Hi PurpleTulips. If there is suspicion on the MRI that you do have MS, before starting medications the doc will likely order a lumbar puncture (spinal tap) to see if there is myelin basic protein or O-bands (oligoclonal) in your spinal fluid which can corroborate Central Nervous System inflammation or damage. You will likely be encouraged to start on one of the medications if both of these tests confirm that it looks like MS. CIS (Clinically Isolated Syndrome) would not be the diagnosis in your case because you have a history of symptoms so this would be a second (or more) event over time. Technically to get an MS diagnosis, there has to be more than one episode of symptoms lasting more than 24 hours and separated by a month or more (or 2-3 years). And the neurological exam also has to tell them something is going on. But the best help you can be is to jot down your history in short concise bulleted format giving approximate dates and duration of symptoms you have had in the past and again now.

[Howie]

I've had 2 MRI's in my life, the first got me DXed, and the second was required for a Hoveround. The first one was long ago when all MRI "tubes" were very small. Both shoulders touched the tube walls.

The second was not long ago, for a Hoveround that SS paid for. It was in a newer MRI machine, and MUCH roomier. Good luck with yours, and the results.

[PurpleTulips]

Thanks guys. I've always felt very welcome in here - (on the other side of the world!) My neuro exams have always been unremarkable, so maybe that's a good sign? I will wait and see what the results say... such a waiting game!