A board to discuss future MS therapies in early stage (Phase I or II) trials.


Postby gallery23 » Sat Mar 09, 2013 12:24 am

recently diagnosed with PPMS.
I live in Ireland but can travel. If there is any other procedure that can help with PPMS.
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Re: ccsvi

Postby jimmylegs » Sat Mar 09, 2013 6:17 am

hi g, welcome.

you will likely get a better response to your first question if you post as a topic in the treatments-ccsvi forum area.

also, re other treatments, have you looked into nutrition? here's one study:

Dietary patterns in clinical subtypes of multiple sclerosis: an exploratory study (2009)
"Compared to Dutch population the intake of the following nutrients was significantly lower in MS patients: protein (p < 0.002), SAFA (p = 0.002), MUFA (p < 0.002), total fat (p = 0.005), cholesterol (p = 0.01), folic acid (p < 0.002), magnesium (p = 0.002) and copper (p = 0.01). Compared to the daily recommended allowance it was found that the intake of folic acid, magnesium, zinc, copper and selenium in MS patients is below the daily recommendation (Additional file 1.). Total energy intake was lower in the MS group than in the Dutch population (p < 0.05)... From this exploratory study we found differences in magnesium, calcium and iron intake between subgroups of MS patients that may possibly be related to MS disease progression. This is important because no effective neuroprotective treatment is currently available for MS patients."

there's SO much more out there, i can link you up to info if you have not already gotten into the nutrition side of things.
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: ccsvi

Postby TeresaL » Thu Oct 30, 2014 10:58 am

I saw Dr Siskin for CCSVI. Helped right after but it didn't last. Stent got clotted, went back twice but no luck.
Helped but didn't last.
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Re: ccsvi

Postby Kronk » Sat Nov 01, 2014 3:57 pm

TeresaL wrote: Helped right after but it didn't last.

I know several people who have had the surgery and this seems to be the standard... Apparently LDN is effective for some symptoms of PPMS.
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Re: ccsvi

Postby CureOrBust » Sat Nov 01, 2014 7:54 pm

TeresaL wrote:I saw Dr Siskin for CCSVI. Helped right after but it didn't last. Stent got clotted, went back twice but no luck.
Helped but didn't last.
Usually with temp results I would pass them off as possible placebo, but since you had a confirmed clotting of the treatment (ie the stent) have you sought a second opinion? There is also Dr Sclafani in the U.S. He is very knowledgeable and thorough. I have had 3 treatments by 3 different teams, with none providing a tangible even temporary resolution of symptoms. :sad:
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