help .primary progressive multiplescelrosis

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Re: help .primary progressive multiplescelrosis

Postby MicheleMaBell » Tue Mar 12, 2013 12:32 pm

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.
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Re: help .primary progressive multiplescelrosis

Postby gallery23 » Wed Mar 13, 2013 2:43 am

Chilax wrote:https://www.facebook.com/#!/groups/149103351840242/

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.....?
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Re: help .primary progressive multiplescelrosis

Postby KateCW » Wed Mar 13, 2013 1:53 pm

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....
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: help .primary progressive multiplescelrosis

Postby Daisy3 » Fri Mar 15, 2013 4:21 pm

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..
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Re: help .primary progressive multiplescelrosis

Postby KateCW » Fri Mar 15, 2013 4:32 pm

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.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Re: help .primary progressive multiplescelrosis

Postby centenarian100 » Thu Apr 18, 2013 3:18 am

marcstck wrote: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?
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