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Old 06-21-2012, 10:16 PM #6
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
Mariel Mariel is offline
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Join Date: Dec 2006
Posts: 724
15 yr Member
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Speaking of doctors with MS, a friend was a doctor with MS and we were talking a lot about the time of my diagnosis. She recommended the Swank diet, and it was the best help I could have had, because of my hidden Porphyria, which made some drugs react atypically in me. She improved so much on the Swank diet that she continued to work as a physician the last time I heard from her, before we sort of decamped from Seattle in disarray due to my extreme pain and not knowing what to do about it.
I am wondering if Baclofen will be good for you, Dejibo.
As for neuro-opthalmologists, the one I saw in Seattle did not give steroids for Optic Neuritis. He said the literature showed recovery as fast without steroids as with. That was, of course, decades ago, so things might have changed. I have taken the one steroid which is OK for Porphyria twice this year, for inflammation and increased leg jerks and eye spasms, which were caused primarily by the forest fire smoke last summer and a repeat 3 weeks ago. Praying to get through this summer without smoke, or to figure out where to evacuate. Lord show me the way.
So my point it that a neuro-opthalmologist I saw did NOTHING but monitor me during the years I saw him. He offered a trial of Betaseron, which was the only MS drug available then, but on reading the package side effects list I declined and he agreed this was wise.
My optic neuritis stayed with me for eight years, with some improvements and worsenings, and then went away completely--until the smoke of 2011.
So going to Boston--probably worth doing if you can relax at all about it, you and hubby, and not expect it certainly to be a benefit. If you could think of it as a get-away trip....is there any fun at all on the way there? Are there back roads instead of freeways? I don't know much about Boston--was there only once on my way to see my son at Cornell, but it's probably worse now with traffic. Staying in a nice suburb and doing some sightseeing and taking other transportation to the clinic sounds great!
I had a wonderful time when I went to Johns Hopkins to see a specialist about Polycythemia Vera. The trip did NOT help a lot, although it increased my knowledge, but just being in a new and interesting city, and taking the shuttle to the clinic, was great. And the buildings at Hopkins were worth the trip to see. I was having a hard time walking and had to walk miles on the campus on sore feet, but it was still a very fun trip.
I had to go alone. My husband was in the last year of his life.
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