While I was googling my neuro last week (trying to figure out if he's good or not, asn discovering he is more than good) I found an article about a lad with rapid-onset MS who nearly died, but was saved by my neuro doing stem cell treatment:
OK Jemm, I'll bite but I think the answers you are looking for are in the link you provided -- the one that provides the defense for the Australian MS Society's cautionary statement.
The story of this young man is indeed extraordinary and the intervention of your shared neuro was apparently not only life saving but entirely healing. I hope time proves this to be a permanent condition.
In this miraculous account, it is easy to lose sight of the fact that there was a reason the neuro had difficulty finding a hospital that would work with him to make the procedure available. There was every chance this young man could have been dead before his cells ever made it back into his body. He was very ill and in a weakened state.
Still, he had little to lose as he had a rare, malignant type of MS. The hospital had a lot to lose if the outcome had been poor. I'm glad the neuro found a hospital to take the risk. I'm glad it worked out all around. This doesn't mean it's a good or reasonable treatment for less aggressive cases of MS
Here in the US, I haven't heard of stem cell or bone marrow transplants being done to treat MS. That doesn't mean none have been done. It does suggest it is not an established or accepted routine treatment at any stage of the disease.
I have see an occasional pop-up ad and some references to a few other foreign countries that are willing to have you part with many thousand of your dollars or pesos or euros (etc) in exchange for stem cell treatment. Claims vary. Promises never ending. Risk real but seldom stated up front.
I do believe there is every reason to have great hope for successful treatment of many conditions and disease with adult stem cell therapy in the future. I doubt these treatments of the future will always involve the destructive and dangerous chemotherapy your young countryman had to endure. Unfortunately, we must wait for it just as all generations before ours waited for even one drug with a hope of delaying relapses.
It is easy to get angry that successful treatment may be so close and at the same time so far away. I thank this MSer, his parents and his physician for taking a chance that may give researchers the courage to pick up the pace of dream achievement. I love to think that my daughter or granddaughters could credit this gamble-well-taken as the spark that created their own cure some day (for the disease they as yet do NOT have).
For today, the DMDs that you have expressed so much anxiety about are a far safer and accessible option. They could buy you ten more good years. And then who knows?
I just don't believe there is a global keep-MS-a-mysterious-and-incurable-disease conspiracy out there. And, although I know next to nothing about the Australian health care system, I'm absolutely certain it hasn't been kept in the dark about an MS treatment everyone else is using routinely.
As an aside, isn't the term "foreign lands" an odd one? It applies to everyone who doesn't live where we do yet no one considers their own self foreign.
P.S. I had to chuckle a little at your postscript. Is the best neuro available the same one who isn't presently available as he's on holiday?
Not sure if we've met or not but I've been with this forum for almost 3 years now. I'm one of the limbo landers.
My DH's niece was diagnosed last year with PPMS and was going down fast. She is only in her early 30's and her parents were determined to do whatever they could to help her. Canada would not do the stem cell treatment and she ended up going to Germany to have it done. It did nothing to help her at all. She found no changes whatsoever and the cost was very high.
She too had heard really good things about it and said it was worth the try and even if she found a little relief it would have been worth it. Sadly that was not the case.
She has had her veins checked now and I believe it's 3 that are really badly blocked so her neuro is trying to find somewhere for her to have the new procedure done as Canada is not doing it yet.
HArrrumph! LOL, it is not only okay, but necessary that docs take holidays, though they do always seem to be at the worst possible time for someone. Burnout and leaving medical practice is a huge problem.
Just a little poke here.
Hi, Moki, sorry to hear about the costly, yet ineffective, stem cell treatment.
I was able to google some articles here about stem cell treatment for MS in the States with positive outcomes, but it appears that these were all clinical trials.
I work with a young man (in his 20's) who had some sort of polyneuropathy and he underwent experimental stem cell treatment and has been symptom free for years. His condition before the stem cell treatment was debilitating. He considers himself cured.
If anyone wants me to ask him for more information, I'll be happy to to do and think that he will readily share information.
well it's all interesting stuff. POTENTIALLY good for some, maybe. WHo knows.
Yes, my neuro is certainly entitled to a holiday - I was given fair warning,. In fact I was told in July that he would be away in September. The only thing I wasn't told was who would be his locum, but then, I didn't ask. His receptionist is my neighbour (yes, small small world) so I only have to walk 50 metres that way >>>>> to ask.
Anyway, do you all think having this bloke for my neuro could be a good thing? I think so, as he seems to think outside the square....I HOPE so.......
Duke Medical Center does stem cell treatments. The Neurologists say it will not help with any damage you all ready have. So if you are in a wheel chair you will be in a wheel chair afterward. They will only do it on a RRMS case in the very beginning who will not be helped by DMDs or Tysabri. Since beginning MS patients have not been tried on DMDs or Tysabri so far there is no such patient. May be they will figure it out in the future. We are getting one of the top researchers in the country soon.
They had a 60 minutes two weeks ago where some con artists were doing stem cell cures in Mexico on MS patients.
I am keeping my eye on Wake Forest University they are growing new ears etc. from people's own cells. May be some day they will grow nerves or myelin.
I never said this physician wasn't entitled to a holiday or that physicians in general shouldn't take them. Certainly, they are. I simply found Jemm's choice of words amusing at a time when she has expressed frustration with the long wait for answers to pressing problems.
I did wonder about how it is this doc leaves for a month without any other options for his patients who need care while he is gone. I openly asked about that. I don't remember seeing a response before. Apparently there is a back up, it just hasn't been utilized.
Jemm, I believe there is every chance this neuro will be wonderful for you. I never intended to be critical of him or his knowledge. I know nothing of how the Australian health care system works so would not begin to judge it. My questions/comments of the past come from that lack of knowledge rather than criticism.
I truly apologize that my attempts at help or humor are sometimes misinterpreted in this community. I will admit to a mounting degree of frustration in dealing with people and events of late. Perhaps I need to take a break from social interactions to rebalance myself.
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