So another year is ending and, still, no new treatments approved for 'progressive' MS! Surprise ! Same old story ! What happened to the 'great' Ocrelizumab' ? Big talk ! No action ! The Monkees once had a song with these lyrics ! ' Too much talk, not enough action...' ! Something has to be going on. But what ?
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No announcement yet.
The end of another year ! Ho Hum!!
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Oh JerryD! Was just checking in after a long time away from the board and glad to see that you are still keeping up that positive attitude! Maybe give HSCT a try...I am. Or you could look into Rituxan. It is pretty much the sister drug of Ocrevus. You may be able to get it for free is you make under 125k. I would ask you neuro about it.
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Jerrys diet
New to this group and not sure how to private message a member. Saw in another thread that Jerry tried the Wahls diet or maybe protocol several yrs back. I'm debating trying a diet but have no interest in just making my life MORE complicated if I can avoid it. So I've got Wahls anecdotal experience. Can I have Jerrys?
I take d, fish oil, flax seed oil, b12. My neuro says might be worth trying wheat-free and dairy-free.
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Hi Sheri. I don't know how to private message anyone but I will say that I have adjusted my diet because I have noticed that 'diet' has been studied to treat MS for many years. I am interested in the Wahls diet but I don't know enough about it to actually follow it . I believe that Dr. Wahls' protocol does work as a treatment regimen . If you get her book and you can make a plan using the information from it, go for it. Good luck
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PPMSers and Ocrelizumab...Anyone?
Originally posted by JerryD View PostThanks CatMom, I've been watching! I couldn't wait any longer ! I did Lemtrada (off label). Now, I wonder what magic Ocrelizumab has in store for the PPMSer's.
I am not on any DMTs, and oddly, you think my doctor would have discussed Ocrelizumab to me last appointment, but he didn't. Perhaps even Ocrelizumab at it's best wouldn't do much more for me. After all, I am still mobile, driving (but alas, fatigue from hell the whole time no matter what I have tried) and that looks pretty good for a PPMSer after probably 20 years since I first knew something was off, although officially, 14 years.Tawanda
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Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994
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I was excited about Ocrevus when it first came out. The doctors were not ever promoting it as a wonder drug and I was hoping that once a number of patients took it, that the reports would be better than expected. I’m not on face book or anything so I get all my MS info here and I’m just not seeing any thing to get excited about. As far as I’m concerned it’s another let down. I’m just losing any hope of getting anything that will help. The only thing now that I can hope for is that I won’t get much worse . Maybe plateau , hold my own so to speak. I’m sure that if there was something , it would be causing a stir on here. Just don’t see it. Maybe I’m missing something ??? Maybe not taking anything is the best for me. Who knows ???It was one agains't 2.5million toughest one we ever fought.
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