help .primary progressive multiplescelrosis

[MicheleMaBell]

I was also diagnosed with PPMS recently. I'm told that I have had PPMS for almost 30 years. I am still feeling fine, ride my bike, walk but my spine feels tight after a certain amount of walking. I walk on the treadmill as much as possible and did 25 minutes on it the other day. I am raising my children and leading a normal life with a few difficulties.

I am taking LDN And I found that it has helped me quite a bit. Recently I read that a clinical trial was being done on people with PPMS using a synthetic drug called idebenone (?sp) and this synthetic drug is similar to coq10 so I started taking coq10 ubiquinol 100 mg and I feel very good and energy levels are better.

I find that my case may be a bit odd because at first I was told that I must have a milder form of MS, then rrms and now PPMS.

[gallery23]

The link above is to a Facebook group pertaining to stem cell transplants (HSCT) for MS and other auto-immune-mediated diseases. Many members, including myself, have had a stem cell transplant. I had mine during August '11 in Chicago. Many members had their own procedure in various other countries in Europe, India, Russia, Canada, South Africa and Israel. The website contains a plethora of valuable information at the top of the page (see 'docs') including various blogs from the members detailing theie HSCT process.

Can I ask did you have the MYELEABLATIVE HSCT or the NON-MYELEABLATIVE HSCT PROTOCOL?
And did you have PPMS.....?

[KateCW]

I agree about the HSCT and pretty much everything Marc ( wheelchair kamikaze) said. I have been travelling to the same Manhattan clinic he goes to from Western Canada for almost years now for intrathecal methotrexate and I am holding steady ( I was pretty impaired when I started o was glad to stop the downward slide). I have been on LDN for a few years and I dont think it's really done Nything for me but as it is cheap and not hurting me I continue to take it.

I don't have any enhancing lesions so no hope if getting in on a non- mylo-ablative stem cell tial DrFreedman hopes to run in Canada. Do be careful with stem cells- lots of clinics out there but you need to do your research.

Anybody heard anything about BG 12 for PPMS? I hear it may have a protective effect we could benefit from?

I wish there were better news for PPMS patients....

[Daisy3]

Is anyone being prescribed Intrathecal methotrexate in the UK for PPMS?
Our Neurologist is pretty conservative and says no whenever we make a request. Admittedly,the requests are not on drugs tested on PPMS,but what is? We really only anectodal evidence to go on..and I don't think I could take it if he said 'no' this time too.
I guess it would be useful if there is another UK patient on the product,it gives us something to talk about..

[KateCW]

The UK neuros sound like the ones here in Canada. They won't try anything experimental at all even though they have nothing to offer.

[centenarian100]

I can't take it, because I am on opioid painkillers due to the destruction of my hips and shoulders from intravenous steroids, a condition called avascular necrosis.

Yes, the AVN really sucks…

I'm sorry to hear that.

Out of curiosity, what dose and duration of steroid (I presume solumedrol) led to that complication?