I have progressive MS, only had one relapse in 2002 before being diagnosed.
I started 3mg LDN in January 2008, and for the first 6 weeks my mobility quickly improved slightly - better balance and legfs strengh
I was so happy
then i started getting worse very quickly, much quicker than i usually progressed,
My mobility became Alot worse quickly
I went from walking 100 metres comfortably, good balance, no foot drop, to suddenly left leg dragging, weakened legs, poorer balance,
I tried increasing my dose to 3.7, 4.5 and 6, but my deterioration stop or improve
I found when i took 2mg the progressions stopped.
and for the last 2.5 years have been taking 2mg LDN every night around midnight - this time seems to work best for me
- i haven't progressed since starting 2mg LDN, and if i have its so slight that i haven't noticed it.
So in August i got tested and treated for CDCSVI - Balloon angio,
my mobility has improved slightly
I was just curious if anyone knew why i got so much worse so quickly by just taking 3mg -4.5mg of LDN?
could the CCSVI I have in my IJVs be the reason?
After looking at my Venogram images Dr Sclafani said i had:
1 - May Thurners syndrome (narrowed left illiac vein)
2 - Stenosis of both Jugular veins
3 - poorly developed lumbar veins
I for one felt much better during solumedrol treatment (10 years ago--before disability). I don't know if steroids help everyone, though. I responded positively to immune system suppression...not so much with an immune system boost, if that's what LDN does, indeed, do.
I'm thinking of giving up LDN when the bottle is finished and signing up for another round of solumedrol the next time I see my neuro. I've been taking 1.5mg for a few months now (down from 3mg). I feel better on the lower dose. I started taking it every other day just this week (mostly because my memory is shot!). I'm progressing.
I feel like we are dealing with a few different diseases, under the name, "MS".
Edss = 8
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If you have been diagnosed with MS or any other autoimmune disease...You MUST rule out Lyme disease and its co-infections.
Cleremound, i had 2 different tests for Lyme disease from two different labs- Western Blot (IgG/IgM) but they both came back negative showing no bands,
i had the tests done when on LDN (2mg) once i had stopped getting worse.
however i do have candida yeast overgrowth, could this explain feeling better for 6 weeks then getting much worse - worse than before starting ldn) ?
if not, what other 'underlying systematic bacterial infection could i check?
I thoghnt that maybe it was the compression stockings I need to wear now or stress caused by the decision as to whether to get the baclofen pump or not
I have been wheel chair bound for the past two years. I think that moving to a low elevation and humidity is partly responsible for my ever worsening condition.
Edema happens to be a possible side effect of a few of these muscle relaxants That I am taking these days.
I was reading posts about Ldn... I am pleasantly surprise to run into a post from my former self from years ago, with a detailed history
That silly girl did not exercise or take any medicine or do physical therapy and look at where are you now.
onward and upward.
I hope that everyone here is hanging in.
Edss = 8
Check out my blog!
I started 3mg LDN last November and had good results for a few months. Now my walking and my leg/back stiffness from sitting/sleeping is way worse than it was when I started LDN.
I am going to stop taking it for a while and see if I have improvements. I just assumed my SPMS was getting worse faster than it ever has progressed.
I am going to contact my doctor tomorrow and see what she thinks too. Maybe I need a lower dose?
Dx RRMS 1990
took Avonex for 15 years
Dx SPMS 2013
started LDN 3 mg. 11/2013
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Take Care All
On LDN since Sept. 2012 with better quality of life.
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