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| November 14, 19993 months on Procarin and added treatment possibility.It's been 3 months with Procarin. I haven't noticed any significant improvement, except possibly better circulation which (I think) is making it so I don't have as much pain while sitting. I still believe that if I had (broken record) exercise I would be adding some good stuff here and on the Procarin Board. Besides my lower legs having flaky skin, my scalp was flaking like Crazy last week. It's not like a dandruff type flaking it's with little patches of dry skin, maybe 1/8 to 3/16 in diameter. As if you were peeling skin from a sunburn. Still happening with legs and scalp but not as badly. My appetite is ok, never had a problem with eating... love flavors! I am always hungry in waking. That seems to be a standard thing with MSers using Procarin, increased appetite. The Procarin Message Board Procarin Patch Users/New MS Treatment is turning out to be a good website for first hand experience and hunger is one thing mentioned. I'll stay with Procarin while I'm checking out and trying to use Plasma Exchange Treatment to go along with the Procarin. There's a study at the Mayo Clinic.Mayo Clinic - Mayo Clinic Study Finds New Treatment Option For Patients (this link no longer available) Actually I'll stay with Procarin especially if I can get this plasma exchange. I think it would enhance the use of Procarin. Elaine Delack says it's been studied since the '60s. Not for CP (that's not unusual) but for severe attacks with real positive results, lasting 3 years or more! Cost is about $2,200 per treatment. Unless I can get in a study (that would be nice!) She also said that maybe 1 or 2 treatments might be helpful for the Procarin. THIS study was with 22 MSers with severe attacks, giving them 7 treatments within 14 days. MAYO CLINIC... ... "The patients in the study had severe disabilities, including paralysis and loss of speech and failed to improve with standard anti-inflammatory steroid treatment. In the study, 42 percent of patients who received plasma exchange treatment experienced moderate to marked improvement, including recovery of full function of their arms and legs and return of speech. The majority of the patients who improved during the study have maintained the benefits of the treatment over a period of up to three years following treatment." A quote that I found interesting was..."The benefits of the treatments also have been sustained in many of the patients treated more than... seven years... ago in the earlier study" This randomized, double-blind study was based on preliminary research by Moses Rodriguez, M.D., a Mayo Clinic neurologist who had treated patients with severe attacks of MS with plasma exchange in the early 1990s. The benefits of the treatment also have been sustained in many of the patients treated more than seven years ago in the earlier study. Another study, the Kiel Synchronization Protocol KielAID References - English - Euler et al - Multiple Sclerosis 1996 (This link is no longer available) has been applied only in a few clinics in Northern Germany; it is not yet applied in California. From corresponding (only 3 times) with Dr. Hans Euler, his Kiel Synchronization Protocol is stretched out and uses lots more medications for a longer period of time. He says(basically) his treatment would be dangerous for someone as disabled as I because of restricted breathing. (That doesn't really scare me off!) Here's his reply in part... "the Kiel Synchronization Protocol is a very intensive treatment, and although there have been no lethal side effects as long as it was applied in experienced hands - patients in whom all four extremities are affected are very much prone to infections, especially severe pneumonia under the intensive immunosuppression. Thus, we do not think that this Protocol should be applied in someone who is bedridden or has other restrictions of his abilities to breathe freely." So... maybe I wouldn't be able to use their treatment, I'm still going to try to use the basic old fashion plasma exchange treatment. The one from Mayo Clinic. What's important here is that plasma exchange seems to do real well with newly diagnosed and flare-ups. If I was newly diagnosed or dealing with a flare-up, I would approach my doctor to definitely try it. The problem (if I should say... problem) with newly diagnosed is that there's fear, uncertainty and waiting for the knowledgeable, skilled words from their doctor (usually!) Instead of trying things now! Another quote from Euler... "For patients with chronic progressive MS there might be - according to our hitherto small experience with this disease - a chance for improvement or even long-term and treatment-free remission in patients with short and severe courses, i.e., within the first or second year after start of the disease." Another problem is... how much is from the treatment or is it just your basic remission?? Not speaking for my CP but for newly diagnosed. If things improved with me it would differently be from the treatment. I'd love to talk to Elaine about this plasma exchange and Procarin but she's a very busy woman. She's just said that the plasma exchange would (should, could, might. I don't remember which word!) enhance the Procarin. Meaning I think, cleaning out some of the junk in my body to where the Procarin wouldn't have to work so hard. This will be another battle to get this treatment because my neurologist is backing away from this as well. He's saying it's not for CP but flare-ups to where steroids don't work. I just don't believe that... I think that some improvement is possible. Again... I'm not talking about hiking Yosemite! If there's any Internet Surfers out there, I'd appreciate any links regarding plasma exchange treatments with MS or otherwise.
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