Progressive MS

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Progressive MS

Postby LR1234 » Fri Mar 11, 2011 11:27 am

Hi

Just wondering has anyone with progressive MS managed to stop progressing and/or reversed damage?

You hear of MS "burning itself out" and I wonder if this is ever really true.

(I know Terry Wahls has but I wonder if she truly had MS)
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Postby LR1234 » Fri Mar 11, 2011 2:31 pm

not looking hopeful then:(
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Postby KateCW » Sun Mar 20, 2011 9:28 am

I was also hoping to hear something positive. I think it is hard to know if you have stabilized or not. maybe the best we can hope for is slowing down? I have been taking LDN for over a year and am still getting worse.A really long plateau period would be nice too.
Kathy, 49 with PPMS,full time scooter.
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Postby chrishasms » Mon Mar 21, 2011 9:53 am

Talk your Doctor into 3g of roids a month...they may do it once every 2, but it works in some people.
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Postby KateCW » Mon Mar 21, 2011 2:19 pm

Thanks Chris.y family doc lets me do pulse therapy 3 times per year (oral Pred-1250 mg every 2nd day for 10 days). I had read that it can help progressive MS. He is also the one who suggested LDN to me and prescribed me compounded 4-AP since the ext release is not yet approved here in Canada. My neuro is pleasant enough but wont do a thing that isn't studied and standard practice with all MS docs. My family doc seems to understand that an untreatable disease requires a little innovation and unconventional therapies.
Kathy, 49 with PPMS,full time scooter.
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Postby elyse_peace » Mon Mar 21, 2011 7:13 pm

hi all -
i started taking ldn (4.5 mg) at my doctor's suggestion. when i saw no difference in my symptoms, I continued taking it, because it is supposed to stop progression. i have progressed much since i started taking it, three years ago. i had stopped taking it since it didn't end my progression. when i told my doc he had me go back on it. he said it works with the immune system.
do not be discouraged by my story. remember, we are each different. continue to keep hope in your bag of fighting tools.
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Postby Bender » Mon Mar 21, 2011 8:53 pm

FNORD!

sorry just had to add that, hadn't noticed the avi before.
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Re: Progressive MS

Postby zen2010 » Tue Mar 22, 2011 10:01 pm

LR1234 wrote:Hi

Just wondering has anyone with progressive MS managed to stop progressing and/or reversed damage?

You hear of MS "burning itself out" and I wonder if this is ever really true.

(I know Terry Wahls has but I wonder if she truly had MS)


Hi LR,

I did stop my PMS by fixing my CCSVI. However, we are all different...
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old monoclonal reconsidered

Postby secondopinion » Mon Apr 04, 2011 3:07 am

Very interesting report. I guess in case of younger patients and early use the results would be even much better.
http://www.medscape.com/viewarticle/712607
IMHO one reason not to follow up with this is, that the manufacturer dont want to compete with his own more expensive monoclonals.
It´s sorry to say but If somebody has EDSS 6 or more, it may be difficult to imagine how something in this world can repair the brain destruction already done. However, it we mix in clinical trials patients with EDSS let say 2 and 5,5, old and young and put everything together it is expected that only marginal effect, if any can be seen in clinical trials.
Unfortunately looks like the situation is similar to cancer trials, where the most potent drugs will be used first for untreatable, metastatic cases and it takes 10 to 20 years before they will be moved to the position of first-line treatment.
Like in case of taxans for breast cancer. It is still not the standard first-line combination treatment, even if we know now well that in case of first-line treatment the 5 years relapse rate will be 2 times less.
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Postby Algis » Mon Apr 04, 2011 4:41 am

If somebody has EDSS 6 or more, it may be difficult to imagine how something in this world can repair the brain destruction already done.


Most encouraging; thanks :? 8O :P :lol:
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Re: Progressive MS

Postby NHE » Mon Apr 04, 2011 9:49 am

Algis wrote:
If somebody has EDSS 6 or more, it may be difficult to imagine how something in this world can repair the brain destruction already done.


Most encouraging; thanks :? 8O :P :lol:


It would be good to keep in mind what Dr. Norman Doidge discusses in his book "The Brain that Changes Itself". In effect, the brain can heal through neuroplasticity, but it often does take a great deal of work. :idea:

http://www.thisisms.com/ftopicp-35000.html#35000

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Postby KateCW » Mon Apr 04, 2011 11:10 am

My damage is all spinal cord, no brain lesions. I am not hopeful that damage like mine (not sure of my EDSS-7.5?) can be healed, but would like to stop it. /I may travel to IMSMP in New York city for the intrathecal methotrexate treatment. Always interested in hearing from others who have tried this.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Glimmer of hope for PPMS

Postby Smilingface » Mon Apr 04, 2011 4:57 pm

I have taken fingoliomod for over a year now and honestly feel it has set the clock back on my progression. I think my EDSS was 4.0 when I started in the trial, it maybe the same now but my testing is showing more strength. I certainly feel better. Hopefully, there are others like me!
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Postby Filmmaker » Tue Apr 05, 2011 4:09 am

I have read in a study about SPMS that the worst damage was done in the first five years but that afterwards, the impact starts to lessen...
http://www.disabled-world.com/health/au ... lapses.php
Is that true? if you've had SPMS for five years and more, did you feel that?
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Postby Filmmaker » Tue Apr 12, 2011 11:27 am

I also found this thread:
http://webcache.googleusercontent.com/s ... .google.ca

Considering that the average begining of unoticed MS sx are around 15 years old, the progressive phase should start in the 30's... hum... so still few years to go I guess..
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