Update on Me!

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Update on Me!

Postby conandcait » Tue Dec 18, 2007 7:08 pm

Hey everyone!
Guess what....After 10 years of meds and 17 years of symptoms...countless neuro appt's and blood draws and all the interferon one person can take, my NEW neuro at Mayo clinic IS NOT SURE IF I HAVE MS!!! That's right folks I said UNSURE.....Am I crazy? Go back day after Christmas for 2 days of all the tests you can think of. OH, of incidental note is a cyst in my pineal gland..By the way...
Kelli 8O
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Postby jimmylegs » Tue Dec 18, 2007 8:18 pm

wow that is messed up! are they saying the pineal cyst might account for some of your symptoms?
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Postby Lyon » Tue Dec 18, 2007 9:15 pm

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Re: Update on Me!

Postby CureOrBust » Wed Dec 19, 2007 1:01 am

conandcait wrote:... my NEW neuro at Mayo clinic IS NOT SURE IF I HAVE MS!!! That's right folks I said UNSURE.....
What exactly triggered your neuro into thinking you don't have MS? I had a wrong diagnosis of peripheral neuropathy for 10 years, when a new neuro noticed my reflexes were over the top, which made him suspect CNS causes (and hence an MRI).
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Postby conandcait » Wed Dec 19, 2007 6:16 am

Hey all!
Um let's see..No disease progression since all this started at age 17. Last MRI in 2004 showed only 3-4 lesions that didn't enhance. She also said that the new criterion for MS DX ( absent the spinal tap- which I never had) is 9 lesions in "hot places". So next week she wants me to redo MRI of brain and do MRI of spine and new Visual testing and go from there. SHe said the pineal gland thing is probably nothing. She also told me to cut out the Ritalin cause I seemed almost manic to her, then wondered aloud if I had ever taken paxil or been dx as bipolar?!?!?!.I am so confused. She said for having MS for 17 years I look too good. Also asked why Dr made the MS dx and I told her the evoked potential and my grandmother's history of MS. She said your grandmother dopesn't really matter. Do your parents have it? I was like NO!!!UGH!!!
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Postby TwistedHelix » Wed Dec 19, 2007 6:49 am

Well, I know Christmas is a time for surprises, but this is just downright weird! I don't know whether to be pleased for you or not, and I've never heard of these new criteria for diagnosing MS, but I hope that whatever they do find out is good news, treatable, and something you can forget all about,
Dom
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Postby conandcait » Wed Dec 19, 2007 7:13 am

Hey Dom- I never heard of the new criterion. It is from http://www.msif.org/document.rm?id=311 I even looked at that link and still am shocked, even though it's spelled out quite plainly. Funny thing she asked if I had a good sense of humor. When I laughed and said I did not ( I don't find a lot funny) My husband laughed. She told me to find something I find funny and watch it a lot. ?!?!?
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Postby whyRwehere » Wed Dec 19, 2007 7:19 am

I don't know, I wouldn't get too excited about a new diagnosis quite yet. Unfortunately.
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Postby Lyon » Wed Dec 19, 2007 7:30 am

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Postby conandcait » Wed Dec 19, 2007 8:00 am

If my new neuro is right, my old neuro ( who just retires this month) has lots of 'splainin to do. :D Kelli
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Postby jimmylegs » Wed Dec 19, 2007 8:02 am

they used those dx criteria for me last year. they were quite busy counting the holes in my brain to get nine, never mind the two in the spine.
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Postby cheerleader » Wed Dec 19, 2007 8:18 am

Hi Kelli...
WOW, this is indeed a strange time for you and your family. Kinda like being a prisoner for 20 years and being told new DNA evidence has proven you are innocent and free to leave the cell. My thoughts are with you as you wait for further clarification.

I've written about the pineal gland on the boards a little, since it's the center of our melatonin production- sleep/wake cycles and sunshine conversion to vit. D is out of whack in many MSers. The pineal gland is usually smaller and dried out in Msers at autopsy. Lots of folks have cysts on the pineal gland, only found in autopsy. Usually is completely benign.

The new criterion is very specific...I wonder how many of the folks on the board would still qualify as MS? My husband would, even though he's had only one flare- he has the required number of lesions in brain and spinal column.

Now, your doc and humor. Made me think of the movie, "What the bleep do we know." There was a segment on humor and healing. A cancer patient claiming she cured herself by laughing at funny movies and by finding joy in her life. Perhaps this was just a suggestion to lighten up and find some fun. (not easy, I'm sure, but what the heck, it's easier than the needles.)

so I guess this means, Have a Merry, Merry Christmas....and keep us posted!
best,
AC
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Postby Terry » Wed Dec 19, 2007 5:44 pm

I spoke to a lady at work today- has MS and didn't sound too good over the phone. I asked her how she is doing, and she said not good. After years with an MS diagnosis, (did avonex and copaxone) she went to see a different neuro and he told her she might not have MS- no suggestion of what she might have instead. She is very frustrated. Maybe this is going to be a new trend- undiagnose the patient.
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Postby Lyon » Wed Dec 19, 2007 6:09 pm

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Postby whyRwehere » Thu Dec 20, 2007 1:32 am

I would also be very interested in knowing what the new diagnosis is. Most likely Lyme Disease, huh?
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