Follow up didn't go so good, and now need feedback from yall

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby KateCW » Tue Jun 14, 2011 9:34 am

I also have spinal lesions and have become quite disabled in the past 6 yrs. I recently travelled from Western Canada to NYC to get intrathecal methotrexate as there is some evidence to sugest it may stop progression of disability. Of course I have primary progressive ms. Why do they think you are RR? Have you had periods of relapse and remission?

Here is the link to researchstudy I went to their clinic, As there are no DMDs for PPMS there are no neuros here in Canada willing or able to even try anythimg promising. I am desperate so we will continue to trsvel to NYC at great expense and see how I feel in a year. The doctor and staff were exceptional.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Postby shucks » Tue Jun 14, 2011 10:19 am

I had ON in 2004, then I had a series of back/neck problems since then that came, would stay a few months and go away completely with or without treatment. I kept being diagnosed with sprains/strains/etc until this past november/december, when all of the current stuf started happening. I have now lost feeling from the chest down on both sides and now from my forearms down through my hands. I cant tell if my really clumsy hands and tripping are from the numbness or some serious nerve dmg going on. I only have 4 lesions, neck at C3c4, in between shoulder blades, and in my lower thoracic spine, but they are doing a number on me. They are all 9mm or so long, so combined with a negative antibody test, dr says it isnt nmo but ms in the neck, eye and spine with no other lesions.

I m seriously lookinig at HSCT I think as a treatment that might halt progression, but 150k and months out of work seem crazy.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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Postby dlb » Tue Jun 14, 2011 11:45 am


Just a thought.... because of your back/neck issues in the very beginning.... have you checked out the posts made by the "Upright Doctor" & UCC (upper cervical chiropractic). It has been awhile since I read those posts but it was very interesting, especially if your troubles began after some kind of trauma to your neck or back. In fact even if you had a neck/back injury early in your life. I think the upright doc has his own thread somewhere on the forum.

bartman.... something you said in an earlier post here has really gotten my wheels spinning! I was given a 4 week cycle of minocycline in the spring of 2005 b/c I had some very weird rashes, spots...??? on my face. This was after I had experienced the most hellish winter of colds/infections etc. Then I got these horrible lesions all over my face - initially they thought eczema, then rosacea, thus the mino. Weirdly, it was after that that my MS symptoms started up & then in July 2005 I was dx'd with MS. I have asked my neuro about Lyme - you can well imagine the answer. In 1992 we moved to a northern Alberta community that is smack in the middle of forest. I know there are ticks in the area b/c the wildlife (deer/moose) have them. There are quite a few people in that community with MS - or is it Lyme????. I think in Canada we are light years behind with understanding Lyme. If you have suggestions for me.... I am all ears. A PM works for me too!

Sorry for borrowing your thread with my questions, Shucks!
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Postby bartman » Tue Jun 14, 2011 3:16 pm

So, I am glad that atleast one person has read the information and may just get it. So, obviously you had an infection in 2005 cause the dr. gave you minocycline. You likely had a herxheimer reaction from the killing of the bacteria causing you all those skin rashes. This is common with this infection though you need to be sure it's not an allergic reaction. Furthermore when you kill one infection then the others come roaring in. These ticks have multiple pathogens inside of them. It's remarkable how many people first have lyme then have MS. If you have an MS diagnosis then you should be able to convince your doctor to prescribe it indefinitely with copaxone. You need to find a good lyme doctor.
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