As someone also with mild MS (EDSS from 0 - 1 depending on exam), I have to disagree slightly. CCSVI treatment treats CCSVI, and it is possible to have severe CCSVI but mild MS as measured by EDSS.FLJhawk wrote:I am happy to be providing helpful information to others. I think my own EDSS score is around 2. Being so mild and can't expect any more than a mild outcome from CCSVI.
I am gaing more confidence in how my MS is preceeding or possibly receeding. Too early to tell, but things are better over the past week or two, so maybe it simply takes CCSVI a while to get going in my particular case. I should add that my MRI did not show the typical brain leasons. I have a large foggy patch of demylinization, and this type may not be easily treated by CCSVI. I don't know, though I would think any improved blood outflows whould be of benefit to the entire brain.
I welcome comments and will contine to report back as long as I feel it is helping someone.
A potentially confounding effect of the dehydrating properties of high-dose glucocorticoids, leading to pseudoatrophy--
LDN should not be used by people already receiving interferon (Beta Seron, Avonex, or Rebif).
Because LDN stimulates the immune system and interferon suppresses it, the two therapies are
incompatible. The combination of these therapies does not cause any adverse reactions, but it is
believed that they cancel out each other’s effectiveness.
In regard to the use steroids, chemotherapeutic agents, and other immunosuppressants to treat MS and other autoimmune diseases, Dr. M.R. Lawrence, an English physician with MS who treats his condition with LDN, has this to say:
Because LDN stimulates the immune system and many of the drugs routinely used by the NHS in the treatment of MS [and other autoimmune conditions] further suppress the immune system, LDN cannot be used in company with steroids, beta interferon, methotrexate, azathioprine or mitozantrone or any other immune suppressant drug. If there is any doubt, please submit [to your doctor] a full list of the drugs you are presently taking so that their compatibility may be assessed.
FLJhawk wrote:Well, I wasn't going to post a 9 week report, but things have improved a bit so here I am.
While I was numby all over last week, things suddenly got better last Thursday. Most of the numbness is gone, though some remains in my hands, but it is not constant. No leg heaviness or significant cog fog and less fatigue, but the legs feel a bit weak when walking, but mildly so and remains pretty much unchanged over the last month or two.
Still nothing that I can attribute to CCSVI, either good or bad, and I suppose the ups and down are just part of MS. But Cece said her improvements continued to come for many months, so maybe things might be worse now had I not had the treatment. No way to know.
I have another Solumedrol treatment coming up next week but, as I said before, I will have a reduced dose this time.
Not sure if anyone is still reading this or gaining any benefit. I will only report significant changes in the future.
FLJhawk wrote: How much is due to CCSVI, to the normal stages of MS, to LDN, to Betaserone (in my 3rd month of that when it starts to become effective), or even to diet, is simply unknowable. No one can use me in a study as I have tried so many different things!
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