Hi everyone, I usually don't post here, I'm in the autoimmune form. I've been sick for 6 yrs., the doctor first thought I had MS, and so thats where most of my time was spent, waiting for MRIs. I was told that all I needed was 3 clear MRIs of my brain, and that would concluded that I didn't have MS. Well it took 6 yrs to get them, and I'm glad to report that I have no plagues on my brain. I still have the sx of MS, but told that I don't have it. OK I'm glad but get this. My cousin has the same sx of MS, except the first time she had a "episode" they do a spinal tap and there no sign of MS, they don't bother to do a MRI, but she gets the dx "parkinson" Fast forward till about two months ago and she gets another attack, and this time they give her a MRI of her spine. And now today she gets the dx MS. But this is what I don't get, all there doing for her is telling her to take Gabbapentin and call me in three months.
I don't know what the heck is true any more, these doctors lie to us, and it seems your always getting the short end of the stick.
What is the protical for a person that is suspect of MS? Is a MRI of the brain and spine crucial? Now I worry that maybe I have MS too, and its been left undx'ed cause some doctor was just trying to appease me.
And do you just wait and see whats going to happen next, like with my cousin Shouldn't she be on something to stop the obviouse exaberation that she having now?
Thanks for any advice, Patricia

Patricia,

Most neuro's follow the McDonald Criteria when diagnosing MS.
http://www.nationalmssociety.org/Research-2005Nov10.asp

MS is a disease of the CNS which includes the brain, spine and optic nerve, lesions can show up in any or all of those areas.

If your doctor is looking for MS he/she should do a MRI with/without contrast of the brain and cervical spine. For some reason some doctors think that just doing a MRI of the brain is sufficiant....it's not.

MS can be difficult to diagnose. There is not one *single* test that can give you a diagnosis....it's about ruling out those things that can mimic MS before ruling in MS.

If you have an exacerbation/relapse/attack/flare-up you can use steroids however, many relapses will resolve themselves without the help of roids - the most common form of MS is relapsing/remitting.

Unfortunately, sometimes it's a matter of going with the flow and riding an exacerbation out.

There are Disease Modifying Drugs (Avonex, Rebif, Copaxone, Betaseron) to HOPEFULLY slow the disease down but they don't always work for some.

Hi Patricia:

Sounds like you have been going through a very frustrating experience. Many of us can relate.

I too have three negative MRI's (except for CC atrophy and cerebral atropy) over 10 years but have "compelling" evidence for MS - history, neurogenic bladder/bowel, spasticity, diplopia and blurry vision, hyperreflexia, weakness, fatigue, cognitive tests that are compatible with MS etc etc. My symptoms started 30 years ago and worsened significantly 15 years ago.

In spite of numerous searches I have not been able to find out how they diagnose the 5% of people who don't show lesions. While my evoked potentials are normal, my MS neuro doesn't want to do an LP at this point in time. She is treating the symptoms - Amantadine for fatigue and Baclofen for spasticity. My quality of life went from 10% to 90% with symptomatic treatment. Sometimes I need my cane, most of the time I don't.

I hate not having a dx. My family doctor doesn't take me seriously and the MS clinic is 5 hours away. At least they have MS nurses who return phone calls and go out of their way to help. My MS neuro is awesome.

Have you been assessed at an MS clinic? For years the neuro I saw was the head of the MS clinic in the city I living in down south, he didn't know what was wrong either, he just kept saying "I don't think it's MS". When I moved up north and went to the MS clinic in another city, I started showing neurological signs. They won't discharge me now despite the three negative MRI's because of that. Incredible care. It makes not having a dx manageable.

Limboland sucks. Getting the symptoms treated - priceless.

Thanks for the reply, I looked at the new McDonald criteria and it seems that know one was following it when I showed up. The first time I had a MRI or seen a neuro, it was a full eight months since my first episode. Then I went another year before the doctor order a MRI and I wasn't even having a attack, same with the last. I never get to see the neuro till the episode is long over Oh welllll......... Things for me will have to get really bad before I go and summit to the BS thats been handed to me. Like I said, I'm in the autoimmune form more, and I have discovered myself, that I'm gluten sensitive, as well as soy, and milk. Getting these things out of my diet has greatly increased my energy level, as well as helping my moods. No more headaches, stomach aches, and alot of the other joint pain has greatly reduced. Heck I was doing so good I even painted my mom's condo But then just like every other time I do something of any effort I crash. And it took me a good 10 days to recover. Still achy, still feel like I've been hit by a mack truck, but I'll carry on. It was worth it, to see my mom so happy, now that her place is all nice and new.
Feel for my cousin though, I hope she signs on here, there so many nice people that have been where she about to go. And theres alot of useful information. . Glad that shes not in limboland, although, thats a doubled edge sword. I know that she has alot of major disission to make. Thanks again, Patricia:
P.S. Cricket I live in the interior of BC, where the sun always shines.

Hi Turner:

The interior of BC would be heaven! I live in an area where the weather can turn on a dime. But we have three lakes in the city, two large ones and a smaller one, all a few blocks away. It's a small city, 53,000 and friendly. Lots of pine trees and deer. But like any city, we do have our problems.....

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Northern Ontario Street Gang.JPG (70.4 KB, 95 views)

Cricket ~ Your picture makes me want to move there....BEAUTIFUL!

Patricia, if you break your posts up like this, more of us folks with MS vision problems can read them and respond

Just breaking up your post so others can read and answer.