I'm In the Study

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Shayk » Sun May 09, 2004 8:04 am

Gee, thanks Diane. :)

I had a rough go with my neuro during diagnosis, but I was somewhat less concerned after this visit.

In addition to concern about the steroids and calcium, he was very clear that he doesn't routinely do MRIs unless warranted to guide treatment. His take, while MRIs give you info about changes, they don't tell you how the person is doing, which he thought was most important.

His take on Antegren was that the MRI data was quite impressive, but he hasn't seen any data yet on its impact on disability, which is "what matters".

Interesting for a neuro I thought.

Take care

Sharon
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NOT IN THE STUDY...

Postby 2gentle » Sun May 09, 2004 12:03 pm

HI SHARON!
SOUNDS LIKE YOU REALLY HAVE A GREAT NEURO :) . IT'S TOO BAD *ALL* NEUROS CAN'T HAVE HIS ATTITUDE. :(

I WAS JUST READING SOME INFO ON THE ON-GOING STUDIES, OF WHICH ANTEGREN IS ONE-VERY INTERESTING STUFF.

TAKE CARE, AND HAVE A GREAT DAY! :D
Every journey begins with a single step...Diane
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Postby Guest » Sat May 15, 2004 8:06 pm

My nuerologist actually tested my calcium level when I have the blood tests done annually to check the liver because of the Avonex. He noticed that my calcium level was high and faxed the results to my PCP. She tested my parathyroid hormone levels. Turned out I had a tumor (begnin) in one of my parathyroid glands. I had that gland removed in January. It normally is the size of a grain of rice, but mine was the size of a grape. There are four glands, so losing one doesn't make a difference. The parathyroid glands had nothing to do with the throid gland. They control the caclium levels in your body.

Wouldn't have known about it if my neurologist hadn't noticed it on the blood test. Many of the symptoms are similar to MS...fatigue, incontenence, muscle pain and weakness, and depression were some of the ones I had. The one symptom I had that didn't fit MS was bone pain. My neurologist doesn't have the warmest personality, but he did catch that. If he hadn't, it could have led to thinning of the bones, peptic ulcers, high blood pressure, and pancreatitis.

Jan
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Postby Jan_in_VA » Sat May 15, 2004 9:07 pm

That was me as the "guest" above. I had clicked on a hyperlink in an e-mail about this thread, and didn't realize it took me there as a guest.

Jan
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What a Neuro!

Postby 2gentle » Sun May 16, 2004 3:18 pm

Wow...all I can say is you are very lucky to have him as a neuro. It's always nice to know they're on their toes so to speak, when it comes to your health...

I think all neuros should do a bone density test, and whatever else they can, esp if you have several steroid tx's...While steroids *may* help shorten a relapse, or relieve some symptoms, they also do a real number on the rest of you,lol...

I knew after I started reading your post, who it was from. :lol: Hope your days have been golden...
Take care...
Every journey begins with a single step...Diane
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