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18 year old daughter with Tumefactive MS

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Posted 10/29/2013 3:52 AM (GMT 0)
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 10:46 PM (GMT 0)
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 11:38 PM (GMT 0)
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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