Bone Marrow Treatments "repair" MS patients – new article
AnonymousMay 7, 2008 at 7:25 am
Fascinating!!! Although on some level I kind of have to say “duh” what took you so long…:D
AnonymousMay 7, 2008 at 11:46 pm
My brother-in-law and also a good friend of mine have MS, so always watching for new information on that front. Sounds like a risky treatment, but amazing results!! My friend is involved in a drug study right now and she has been doing GREAT for the past year so there are some exciting new things on the horizen for MS patients.
Thanks for the link!!
AnonymousMay 10, 2008 at 6:28 pm
This article was very interesting.
CIDP is wreaking havoc with my body, and my health is in decline. Besides attacking my arms and legs, it attacked my autonomic system, knocking off the nerves that control each organ, one by one.
The normal protocol of steroids, then IVIG, then Plasmaphereses, has all failed with me. I am now on high-dose Chemotherapy, (for the past 9 months so far). My doctors told me two summers ago, that I had about two years left to live, since it attacked the autonomic system.
The interesting thing, is that my neuro. told me that if the chemo. does not work, then he has only one thing left that he could try: a bone marrow transplant.
After reading this article, I am now wondering if this WOULD be a good plan of action. Since MS is a sister disease to CIDP, (one affecting the CNS, the other affecting the Peripheral Nerve System), this seems like it might work.
I also remember about 1 1/2 years ago, reading and applying for the stem cell research they were doing, in I think it was a medical center in Minnesota or Michigan…I can’t remember where now. I attempted to apply for it, but even though it was government sponsored, each patient had to pay all costs involved. The insurance companies would not cover the costs, as it was considered “research” and not a normal protocol, so you basically had to be rich to enter the program, since it was going to cost thousands of dollars.
But, I am wondering how the end results or how that program is going. Has anybody heard?
Thanks for the info, Julie.
AnonymousMay 12, 2008 at 12:05 am
I was just wondering what kind of chemo treatment you are currently getting? I came down with a severe case of CIDP in March/April of 2002, & after over 40 IVIG infusions, 17 PP, & weekly solumedrol infusions, it was determined that nothing was working for me to arrest my CIDP, even temporarily. So in Jan of 2003 I was put on 5 cytoxan infusions in 10 days, & then once a month for 8 more months. This did arrest my CIDP, & I saw significant improvement during the following two years. Is this what your doctor is hoping for?
AnonymousMay 12, 2008 at 6:34 pm
About a year ago, you had sent me a reply, what you went through, and the results after going through after the Cytoxin regimen. I actually printed it out, and showed it to my neuro.
Yes–I went throught the exact same things you went through…the solumedrol, 6 months of the IVIG, a year of the plasmaphereses, all to no avail.
Now I am on 2000mg of Cytoxan, (the highest possible dose) monthly. This has been going on now 9 months. They watch my bloodwork constantly, as you know how it can get out of whack on the Cytoxin.
Since the CIDP hit my autonomic system, the doctors watch to see what organ it hits next.
They still can’t tell yet, if the Cytoxin is working. Since the summer is the worst time of the year for me, when the heat dramtically induces flares, and usually every year I end up in the the hospital, they plan on at least the next 6 months to continue on this Cytoxin regemen. One of the areas hit was the phrenal nerves, of which control my diaphram, thus I can only breathe in shallow breaths. My lung capacity is down to 45% because of this. They tell me that this is what is going to do me in–I will get a flu or pneumonia, and not be able breathe. They tell me I am not far off from going on a respirator. (To keep my sanity–yes, I still smoke. I told my doctor that what’s the point in quitting now, since smoking is not what caused this and at least I get satisfaction from it–naughty me…)
But back to the discussion of this thread…my neuro. had mentioned that as an absolute last resort might be a bone marrow transplant. I read Julie’s topic, and found it very interesting, since MS and CIDP is so closely related.
My Rheumatologist, (the doctor who is actually in charge of the Cytoxin administrations), is starting to get nervous about me being on the high doses of the Cytoxin for so long, but yet understands the next 6 months are the worst time of the year for me, with September and October being the hottest months of the year, (I live in Southern California and those two months are when we get the Santa Ana winds in the most).
Thanks for your reply,
AnonymousMay 12, 2008 at 11:52 pm
About the weather, I think you should be living here in NE Minnesota, where we have had 3 blizzards in April (one totalling 32″ of snow at once), woke up Mother’s Day to 2″ of snow, & just saw on the news where they are predicting snow again for next weekend. I wish I could post the picture from our local paper yesterday; Saturday was our fishing opener & it showed the boats trying to navigate around the ice still on the lakes. Today’s HIGH was around 44 degrees! Do you want to trade house, LOL?
My doctor’s original plan was for 12 months of cytoxan infusions, at 1800 mg a month. But when my white blood cell count reached nearly zero after 9 mo, he ended the treatments. That was over 5 years ago & I haven’t relapsed yet. I am so sorry your autonamic nervous system has been affected as well, as I never had to deal with that. About the smoking, I took it up about 3 years ago as well (had smoked years ago), as I had also enjoyed it & felt I had just lost so much of my old life. Don’t beat yourself up about it, we have enough battles to face as it is. For me, it really helped with my foot pain, probably by cutting off the circulation to my feet even more? Best of luck…
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