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Old 02-02-2011, 07:08 PM #1
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Default Just a Newby

Hello, everyone, my name is Margo. I have recently been diagnosed with Multiple Sclerosis..or kinda of I guess. My mri showed 8 lesions, but my spinal tap came back negative. So, my neuro says he can't make a definate diagnosis just yet. Says he is 95% sure...so, now I am here to talk to other people who are dealing with the same thing that I am dealing with.

Thanks so much,
Margo
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Old 02-02-2011, 09:54 PM #2
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I replied in the welcome thread and here is a copy..

Hi Margo, welcome to NeuroTalk and the MS forum.

I can't help you with your DX, except to say, that, if your Doc is not a MS specialist, it would be a good idea to see one. It sounds MSy to me but I'm only a specialist in having this disease for a long darn time.

Come in and join us and we'll all try to compare notes with you and see what we see. Hang in there, you're in good caring company here.
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Old 02-02-2011, 11:39 PM #3
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Hi Margo and welcome! Sometimes it takes a while to get the "MS" diagnosis. It's a tricky disease. Different for all of us. I was diagnosed in 2005 but have probably had it for years prior. There's a large community of MS'ers here and I'm sure you'll feel quite at home with all of us. The big snow storm is keeping many away right now so just give them all a chance to welcome you....although it might take a while!
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Old 02-02-2011, 11:57 PM #4
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Welcome Margo. I was the opposite. My spinal tap and symptoms said yes but I only had one lesion so I am 'clinically probable MS'. As long as my neuro treats me with the same respect and way as one with actual MS I don't care. Because I had just the one lesion she sent me to an MS specialist who agreed with her diagnosis.
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Old 02-03-2011, 06:46 AM #5
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Hi, Margo! Welcome to the community! I was a "probable" for several months, and found it quite frustrating. I like my ducks all in a row, and I wanted a "yes or no" answer. I learned that MS isn't always like that.

You'll find lots of support here, some good advice, and lots of new friends! We're all in the same boat!
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Old 02-03-2011, 07:44 AM #6
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Hello Margo and Welcome to NeuroTalk

I am usually the odd ball in the diagnosis section

It took me about 3 or 4 months to have a diagnosis of MS. My clinical diagnosis was based on a positive LP, symptoms and neuro exam. My other tests were either inconclusive or negative. My MRI was negative...no lesions.

Make yourself at home and please ask any questions you may have.
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Old 02-03-2011, 08:42 AM #7
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Hi margo and welcome!

I was diagnosed (dx) without a spinal tap. I got lucky and didnt need the poke. its been a rollar coaster ride.

If you have questions be sure to ask.
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Old 02-03-2011, 09:10 AM #8
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Hi Margo. Welcome to the group. Sorry for the circumstances. I think I am the strange one as I had no idea MS was even a possibility and my diagnosis was very quick. In a sense, I am lucky for this as there are people who spend years trying to get a definitive answer. I was diagnosed in 2008 as RRMS and that was changed in 2010 to PPMS.

Its a very tricky disease that seems to change from day to day. One good thing I have found is the support system here in this group. I am able to find others who have the same symptoms and can offer good advise. And they are very supportive here. You will find that we all become a big family, celebrating victories, supporting each other in sorrow and making each other laugh when we desperately need it.

I wish you luck with your doctors. I will agree with the others that an LP isn't a definite. In fact, my second neuro (who i am still seeing) does not order them unless the patient requests it.
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Old 02-03-2011, 09:35 AM #9
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Welcome to NT, Margo...lots of support, info and laughs here!!

I was dxd in 2008, but had symptoms many years before. I had a negative lumbar puncture, but lesions. It wasn't until a year after that mri that I got the dx due to symptoms.
I'm RRMS, but the stupid symptoms just keep rolling in...

I would also suggest an MS specialist. My first neuro thought I had migraines causing symptoms (not); the second opinion thought it was from my fibro the third neuro I saw dxd me, but then gave me over to his nurse practitioner, who took her time calling back (sometimes a week or more), and always pooh-poohed my symptom reports.

My current neuro concentrates on MS; he is very conservative with meds and with IV steroid use, and monitors me well. I am very happy with his care.

Good luck, and keep us up to date on what is going on with you; do research, and make sure you keep a symptom journal with dates so you can bring that to your doc's appt.
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Old 02-03-2011, 12:32 PM #10
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Smirk Welcome!!

I consider myself a newby too. My name is Sheila and I was dx in Oct. 09. I recall symptoms back to 12/08 but they may go back farther. I had an MRI first and then a spinal tap. Before the neuro dx'ed me, I had an inkling because when I told a drug rep of my symptoms he told me it sounded like MS. He helped me decide on Rebif for therapy. I stumbled on this site and have found some good information and its nice to know some people who understand what I am going through. At first glance I appear 100% healthy but watching me walk and talk after a while and you would think I am drunk. I had no idea that there was a name for the walking besides what the Dr.s called it until I came to this site.

I hope you get alot out of this forum and help with your health issues and questions that you might have.
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