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Old 03-07-2011, 11:31 AM #1
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Howdy All,
Had my spinal tap on Feb 15th, went Thur for the results. Dr. was delayed for some reason, said he had to run over to hospital for something. Twenty min later he came in flustered and upset. They ran everything but the MS panel, which was sitting still at hospital, for the last two weeks. I prob looked a little pale as, it seems this always happens to me.
As he calmed down, he went over all the tests he had run, Sarcoid, some tumor cells test, mad cow disease, every test he could find to run, that mimics ms. They were all negative. So I said so no diagnosis then? He took me out in the hall to his computer and brought up my last MRI's they had done. He showed me the suspected MS lesions, the dawson finger one, the one, looked like it was around the middle of my brainsten, went all the way around the middle. then another one in the back. He even if the MS panel was negative, he had ruled everything else out, so it was MS.
Gave me a prescription for gabapentin, one for Physical Therapy for my balance, and dizziness, to see if they can help. I go back in six weeks.
The head of the lab department came over and got me and took me over for a blood draw, to go with the fluid, to run the MS Panel. I questioned the viability of it, since it was two weeks old, of course he said it would be fine!!
So I guess we will see, We are done testing? He comes down to my hospital in town once a month, so I will be seeing him down here, and don't have to go back up to his office. He said the CEO of the hospital, will be contacting me to apologize for their error.
So I'm kind of relieved, but could have done without all the stress!!
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Old 03-07-2011, 12:01 PM #2
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Im happy you have answers, but sorry you had to get this one as the final conclusion. Hugs. Sounds like your MD is at least listening to you, and holding himself, and his staff accountable. way to go!
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Old 03-07-2011, 12:13 PM #3
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Do the physical therapy he gave you if you can. I'm doing some now too and I think it's slowly starting to help a little bit with my balance. I wish it would help the spasticity some more, but at least it's helping me somewhere.

Too bad you have to join the MS "club", the dues are sucky, but the people are nice.
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Old 03-07-2011, 12:14 PM #4
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Like MS isn't stress itself. MY tests went easily and within a week Neuro got results, classic MS results, but never thought MS and no body thought or gave me a clue and DX brought me to tears. Sorry for the stress they gave you. They owe you a BIG apology. Flowers or chocolates would be nice, but don't hold your beath. 8-D 8-{
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Old 03-07-2011, 12:36 PM #5
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at least they still have the fluid.
better than having lost it or thrown it out.
i hope the test gives you more answers.

my MS was dx'd by my mri alone. even tho i had a + LP test i was dx'd after the mri and clinical exam/hx.

keep us posted please.
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Old 03-07-2011, 12:53 PM #6
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(((((Debw)))))
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Old 03-07-2011, 09:59 PM #7
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First of all, this is not a club I wish you were a part of...
Second of all, I am glad you have some answers...
third...are they discussing a DMD with you yet?
What stage of MS do they think you are in?

Make sure you take copious notes about your sxs, dates of onset and dissipation...as well as ?? for the doc at your appointment.

And most important of all...know that you are NOT alone...we are there for you, with info, hugs, laughs and support.
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Old 03-08-2011, 12:25 AM #8
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DebW, Sorry to hear you are one of us now. But better to know what disease you are fighting. We all need to know what is wrong with us. We know something is very wrong and they can't find a label for it. It just takes time.

I hope you feel better with the new medication Gabapentin (Neurontin brand name). Go to PT, it helps. Take care.
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Old 03-08-2011, 09:35 AM #9
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Thanks for all the welcomes and well wishs, Was really beginning to think I would never know where I belonged.
Think he waiting for MS panel to come back, although he did mention inferons?
I am thinking this Gabapentin is kind of like Lyrica, which I was on for my fibro a few years ago. Sounds like you have to build it up til you get to a level that works for you. I did hated going off of the Lyrica, Even though I went off slowly, It really caused head pain!
You are all a Very Nice Group of People, I've been around since 2007, Reading and listening, trying to figure out what was going on. It's so nice to have someone to talk about what you are feeling with people who are feeling something similar.
Going to make Pt appt today. Later my friends!!
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Old 03-08-2011, 10:02 PM #10
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Quote:
Originally Posted by debw View Post
The head of the lab department came over and got me and took me over for a blood draw, to go with the fluid, to run the MS Panel. I questioned the viability of it, since it was two weeks old, of course he said it would be fine!!
I have always heard that the blood had to be drawn on the same day as the LP for the test for the O Bands to be accurate. Anyone else ever heard this??
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