18 year old daughter with Tumefactive MS

donnam12

New Member

Joined : Oct 2013

Posts : 1

Posted 10/28/2013 8:52 PM (GMT -7)

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

Forum Moderator

Joined : Nov 2012

Posts : 3922

Posted 11/13/2013 3:46 PM (GMT -7)

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

Joined : Nov 2013

Posts : 4

Posted 11/20/2013 4:38 PM (GMT -7)

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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18 year old daughter with Tumefactive MS

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