CIS and playing the waiting game....

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CIS and playing the waiting game....

Postby Toby93 » Sun Mar 27, 2011 6:52 pm

Hello to all.

I have been reading posts on this site for a while now and thought I should just join in finally! I had a episode of optic neuritis back in September 2010. MRI says that "there is evidence of demylenation" - still waiting to hear what the neurologist says was on the MRI as fas as lesions go. I had my first appointment in December and have yet to hear back.

I have tingling in my right hand and l'hermittes sign on and off. Since the neuro appointment in December, I have been supplementing with 8000ui of Vitamin D3 and taking B12 and Omega 3 along with a whole bunch of other vitamins recommended on Direct MS and Joan Beals notes on Facebook. I am also following the Best Bet Diet.

I guess my question is this- once there are lesions and a few symptoms, why will a doctor not make a diagnosis? Is it possible to not progress to MS
once you already have symptoms? I realize that there is probably no answer to my question, but I am just curious as to why the neuros won't just diagnose. I am 45 years old, female, and no history of any neurological disease in my family. I have had a while to digest the possible diagnosis, and am going to be ok with it. The thing that bothers me about all this is the possibility of passing it on to my children. They are young adults now and I have them taking a lot of the supplements that I take, especially the vit D3 and omega 3s.
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Postby MegansMom » Wed Mar 30, 2011 10:24 am

Please read the Thread about CCSVI- people with CIS and ealry MS have the best outcomes.

go to youtube and put in "CCSVI before and after"
Cat (Catherine Somerville on FB)
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Stabilo » Wed Mar 30, 2011 12:37 pm


From what I've been told by my neuro, they will not diagnose without 2 clinically isolated incidents. If you are having the tingling now, is your Neuro aware of the new symptoms?? I wish you the best of luck in finding the answer. It took me over a year before I had a second incident, and was diagnosed shortly after that......

I am definitely pro CCSVI, but I think it's senseless the way people throw it out there as an answer for everything. I agree it's great to be informed about it, but it's an individual decision as it has different outcomes for everyone.....just be aware :)

Take care
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." ~ Eleanor Roosevelt
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