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#621 | ||
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Junior Member
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"Thanks for this!" says: |
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#622 | |||
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Grand Magnate
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You might want to try some Benefibre to keep constant, jnet.
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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#623 | |||
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Member
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![]() And now for the good news: The Chief of Neurology in Salt Lake said that everything looks like MS on the MRI, so no extras to worry about. ![]() We had a very candid discussion with him about meds, because he is not my "treating neurologist". He told us that the higher the effectiveness of the MS drugs, the more side effects they have. ![]() He also said that the MS drugs focus on the inflammation of the disease - nothing is aimed at helping the degenerative condition of the disease. He is doing a trial on an oral med right now BG something or other. He was definitely sold on Avonex and does the Tysabri infusions. He said there are about 9 different trials on MS drugs going on right now. I asked him, "what do you know about Naltrexone?" He told me about the study in San Fran, I told him about the recent grant from NMSS to do a trial on mice in PA. He wasn't aware of that one. He told me that he believes LDN will NEVER get trials done...because it requires 1/2 billion dollars to do the double blind placebo trials. And as we all know, there is no profit in LDN. I asked him, "why do you think LDN helps people with MS?" He said, "I don't know, maybe it has some anti-inflammatory qualities." Wow...an honest answer. I feel like we opened the door for him to criticize LDN and he didn't do it. Hubby and I feel very good about the direction we are headed. ![]()
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Brenda . Dx with RRMS 2/05 Avonex 3/05 LDN 11/08 |
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"Thanks for this!" says: |
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#624 | ||
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Junior Member
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"Thanks for this!" says: | SallyC (11-22-2008) |
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#625 | |||
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Wisest Elder Ever
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Huh?? I have never heard that before. I'm sure he's a good neurologist.....but that just sounds like an excuse to keep you on something that makes you miserable. I'm happy that he didn't think the MRI was anything to worry about. I'm excited for you to start the LDN and report back how you're doing on it! ![]()
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#626 | |||
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Member
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In my mind, the bright spot was that he had heard of LDN and he didn't bash it. Also his honest answer of "I don't know" Does that make it more clear? I looked back on my wording and realized it might not be very clear. Sorry about that. ![]() We really were not discussing on a level where he was telling me what to be on, because I already have a neurologist. It was kind of nice to just have a discussion without strings. He did try to subtly scare me - "Your disease is active right now, the blood brain barrier is being compromised, you need to be on something." I asked my hubby if the dr. had scared him into putting me back onto my interferons...hubby said no.
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Brenda . Dx with RRMS 2/05 Avonex 3/05 LDN 11/08 |
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#627 | |||
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Member
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oh no not hyper as in anxiety.. just very energized.. much like i use to be before the daily fatigue.. i think i chose to use the word "hyper" just because its been so long since i felt somewhat normal and able to function without feeling like i "needed" a nap... it has done very little for my pins & needles Sx but the fatigue was the big killer in my MS.. there again it is way to early in my LDN journey to say if it will or will not help some of my other Sx.. but i can live with some pin pricks if i have to. my relapses are usually pretty well spaced at 6-8 months apart but neuro says i am RRMS ![]()
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Dx:2005 RRMS Nothing Beats Bloodshot Eyes And The Scream Of A Tube Amp At 3am. . |
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"Thanks for this!" says: | SallyC (11-22-2008), Twinkletoes (11-20-2008) |
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#628 | |||
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Member
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I am also hoping that the LDN helps with the fatigue. That is what has been giving me the most trouble. During remissions I used to be able go like the energizer bunny. I'm hoping to feel that way again. You give me hope PunkDizzle. ![]()
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Brenda . Dx with RRMS 2/05 Avonex 3/05 LDN 11/08 |
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"Thanks for this!" says: |
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#629 | |||
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Wisest Elder Ever
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That is the main thing LDN has done for me. I used to take 1 to 2 Provigil a day and still even take a nap!! Now, I might take 1/2 of one if I know I have things to accomplish that day just to make sure. But I usually have energy to spare and don't need it. It's (LDN) truly been a Godsend to me. And, just to be clear, it's not the hyped up type of energy you get from too much coffee or some sort of stimulant. It's just a good feeling of positive energy and the actual desire to want to get out there and do something! I hope you have a positive experience with it. ![]()
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | SallyC (11-22-2008) |
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#630 | |||
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Grand Magnate
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I'll see if I can find the explanation someone I respect very much (but is on the CRABs himself, not LDN) gave me for how LDN might affect neurodegeneration. If I haven't come back in a week or so (ramping up for surgery right now), remind me please ... My neuro is involved in that BG trial too, and she was expecting some good results. I haven't heard anything negative yet, so I'm keeping my fingers crossed . . . Cherie
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I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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