18 year old daughter with Tumefactive MS

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donnam12
New Member


Date Joined Oct 2013
Total Posts : 1
   Posted 10/28/2013 10:52 PM (GMT -6)   
My 18 year old daughter has just been diagnosed with Tumefactive MS. Her lesion is large and in her right frontal lobe of the brain. She presented with symptoms of a concussion, as she had fallen and hit her head. In less than 24 hours she was in ICU unable to move her left side with what appeared to be a tumor. After two MRIs and findings of additional small lesions the doctors were able to positively diagnose her with TMS. She had 5 treatments of plasmapharesis and is home with prednisone to taper over the next 5 weeks. The doctors that have been treating her have never seen TMS so they don't have many answers as far as treatments and progression. Is anyone familiar with this?

opugirl
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Date Joined Nov 2012
Total Posts : 3922
   Posted 11/13/2013 5:46 PM (GMT -6)   
Hi donna,

Can you send me an email? I'm curious whereabouts you live? I sat next to an 18 year old girl in my drs office. They diagnosed her with MS and it ended up being Lyme disease. She is doing well now. I do not think all MS is lyme but the dear is 18, it might be worth looking into. I scan this page occasionally b/c lots of MS folks end up in the lyme forum, it would be nice to explore other possibilities in the beginning of treatment!

Kindly,
~beth
Forum Moderator

July 2007 - Deer tick bite w/ physician confirmed EM Rash - given 10 days of Doxy
October 2012 - My world gets rocked January 2013 - My world turns upside down
March 2013 - Igenex +, start treatment with LLMD, LLND, and herbalist
July 2013 - Weaning off of antibiotic treatment

Feel free to click on my name and shoot me an email. I have referrals for DE, PA, and NJ areas.

Creidim
New Member


Date Joined Nov 2013
Total Posts : 4
   Posted 11/20/2013 6:38 PM (GMT -6)   
Hi,
I just joined today and I just saw your post.I was diagnosed with MS three years ago when I was 17.Last week I was diagnosed with lyme disease,so I don't have MS.I have stopped all MS treatment and started treatment for lyme disease.I have been paraplegic for two and a half years but I am determined to do whatever it takes to walk again.Please get your daughter tested for lyme disease.If I was diagnosed earlier I may not be in a wheelchair now!
Best wishes to you and your daughter and never ever give up! :-)
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