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18 year old daughter with Tumefactive MS

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Posted 10/28/2013 9:52 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?
Posted 11/13/2013 4:46 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
Posted 11/20/2013 5:38 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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