Why not diagnose it as MS - Multiple Sclerosis Message Board

brownowl · 08-25-2007, 01:30 PM

I've had 3 MRIs -- the last MRI said the following: "There are several foci of hyperintense subcortical white matter signal in both cerebral hemispheres in the right and left frontal parietal regions, which have to be considered suspicious for demyelinating lesions of multiple sclerosis". I went to the neurologist -- she said that she does not know if I have MS. I've been have great problems with my eyes, they hurt to move, I have this headache that won't quit. I've got this numbness and tingling in my head that won't stop, and the leg muscles are so tight I can hardly move. Yet, they say that I have the lesions of MS, but they are not "glowing"???? Whatever that means. For some reason no one wants to say I have it. All the things I find on the internet say, early diagnosis, early treatment to slow the progress is the best thing, but no one will say it. The only thing they keep saying is that "I do not want that diagnosis" -- first why not if that is the case and is there something else that I should know about it that they are not telling me??? I'm looking for some help here....

NCLynn · 08-25-2007, 02:24 PM

I understand totally where you are coming from! I too am trying to find out what's wrong with me. My neurologist is 95% sure I have MS, but the MS specialist basically said my symptoms could be due to poor diet, lack of exercise, anxiety/stress and weight and said I absolutely don't have MS! Now 3 days later I am still having the same symptoms (never stopped) and I am very slowly losing use of my hands. My neurologist doesn't agree with the MS specialist and at my suggestion, he wants me to go to Johns Hopkins for a third opinion. I would suggest that you contact the National MS Society in your area and get the names of MS Centers in your area and make an appointment for another opinion. Be sure to have all your test results, medical records and any films from MRIs so you can take them with you.

Please keep us informed as to what's going on with you and best of luck!

Hugs,

Lynn

zandvoort · 08-25-2007, 02:29 PM

Hi Brown owl-I know how frustrating it is. I think glowing means the lesion is new and active and would be causing current symptoms. I know when I had neuro issues that was what they were looking for on me. They said I could not be having the symptoms I was having and not have glowing lesions. Who knows, that was what I was told. It turned out I have Lyme, the lesions and symptoms can be very similar and the blood tests are inaccurate.

There are other things that cause lesions. Have your doctors considered those? I am not aware of the extensive list but maybe someone else here is. You can probably find it on the web somewhere.

How many Neuro's have you tried? Maybe another would have better direction or be able to dx you from current info. Most people have to go to more than 1 to get a dx. How about your local MS society?

Very best wishes and keep us posted. I am sure another person will have better info for you. Meanwhile, please try and stay los stress. I know it is really hard but it helps your health if you can.

brownowl · 08-25-2007, 03:15 PM

3 people told me they believe it to be MS. My optometrist, My opthamologist, and my Rheumatologist. The one that says no is the Neurologist and it is her opinion that carries the decision. But, I don't know why she doesn't want to say it. I've asked. She said the Visual Evoke Response test was normal -- problem is -- I wasn't seeing anything clearly on that -- I had a torn retina in the left eye and the right eye is extremely blurry, so I don't know how that is normal. Then they did this spinal tap thing -- it came back with an opening pressure of 250 -- she said that is high, but with obese people it is high. Well, ok, I'm not the smallest person in the world -- but could it also be high because of MS???? Then there are these lesions. I don't know who to ask???

moore170 · 08-25-2007, 03:21 PM

I have been told numerous times that the MRI is not always indicative of the symptoms you are having. It is a great diagnostic tool.
When your lesions are "glowing" that means they are active.
If you have MS, you are right, you do want to know so you can start on one of the disease modifying drugs. I think when you read that you don't want the diagnosis, they mean you don't want the disease.......
Candy