Spinal Tap Advice

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Re: Spinal Tap Advice

Postby Zac » Fri Jan 04, 2013 5:21 pm

Kaebean,
This is only my experience but Tysabri made me feel worse with each infusion, I was then informed after 12mths of use I was now JCV positive so I instantly came off it in June 2012. Hny.
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Re: Spinal Tap Advice

Postby HappyPoet » Fri Jan 04, 2013 10:27 pm

Interesting discussion. Twelve years ago, I was diagnosed with "MS" without having had a spinal tap. Before reading this thread, I thought I was lucky, but now, I think I should have a spinal tap that tests for everything possible under the sun.

kaebean, when you get your CSF test results, will you please let us know all the tests that were performed on your CSF?

Happy New Year, everyone
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Re: Spinal Tap Advice

Postby kaebean » Sat Jan 05, 2013 5:22 am

Zac,
I'm so sorry to hear that. Out of curiosity, has your neurologist thought at all about other possible neurological diagnoses? It sounds like you've been through the ringer,and I know you said he found you particularly difficult to diagnose with MS. Do you think you'll be starting another DMT; Rebif, Copaxone, Betaseron, etc.?

-All the best
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Re: Spinal Tap Advice

Postby kaebean » Sat Jan 05, 2013 5:30 am

HappyPoet,
If your neurologist is also heavily involved in MS research, he/she is more likely to have access to the labs that will run more of the newer CSF tests. It's definitely something to look into. Also, I know my practice in NYC (MS Research Center of NY and International MS Management Practice) was asking for CSF donations for research purposes. If you're stateside, it might be a free option to get all of these tests done in a really incredible clinic. I'm not positive if they're still doing this CSF program, though...I last checked a few months ago.

I will definitely give you as much information as I can regarding the different tests run on my CSF. I won't get it backfor another two or three weeks, at the earliest, though.

-Happy New Year!
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Re: Spinal Tap Advice

Postby Zac » Sat Jan 05, 2013 11:13 am

Kaebean,
My neuro has suggested interferons as an alternative although he'd rather me be back on Tysabri ?

Me on the other hand would rather pass on drugs and explore other routes, having clear CSF and non compatible CCSVI results I must keep my body clear of anything that could confuse further tests.

My neuro has never discussed what I'v been tested for so far, a question I need to ask !
I requested bloods for Lymes from my doctor which was also negative plus my most recent MRI was reported as calm with no hot spots.....I'm so confused but remain positive & optimistic.
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Re: Spinal Tap Advice

Postby buygirl » Sat Jan 12, 2013 6:55 am

One week later and I am having to lay horizontal again. My headache started on Monday and I still have it. Not until Thursday night did I start laying horizontal. I thought I was just over tired/flu.

They said i caused the leak by doing yoga. This stinks!
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Re: Spinal Tap Advice

Postby kaebean » Sun Jan 13, 2013 12:30 pm

Zac,
I'm glad you're staying optimistic! Being negative never does any good. I know that I was experiencing symptoms of MS 4 or 5 years before my diagnosis and it was so frustrating to not know what was wrong with me. I hope you start getting some of the answers you deserve. Have you thought about reaching out for a second opinion or consulting a naturopathic doctor?
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Re: Spinal Tap Advice

Postby kaebean » Sun Jan 13, 2013 12:34 pm

buygirl,

I'm so sorry about the leak. Take it easy, drink some caffeinated tea and eat some chocolate! You deserve it...and the caffeine should help with the headache.

-All the best.
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