This is the situation... looking for some wisdom.

A board to discuss the Multiple Sclerosis modifying drug Rebif

This is the situation... looking for some wisdom.

Postby hmimcclellan » Tue Nov 18, 2014 1:38 pm



Hi there, I was diagnosed with RR MS in May and I have been on the Rebif shots since June.
I will be honest and say that I really don't know a whole lot about MS other than what I've researched after the diagnosis. My doctor/neurologist were not incredibly enlightening but neither was I incredibly receptive. I went to the doctor originally for what I suspected to be a sinus infection, I left with a diagnosis of MS. I guess you could say I've had my head in the sand since then, trying to cope.

So for the purpose of this post I would like to have any and all information or advice from other people with MS. I would love to know more about how MS works (or doesn't work).

My immediate symptoms from the relapse that lead to me getting diagnosed were loss of vision/extreme blurryness in my right eye and fever. I've always been an off-balanced clumsy person. I noticed a lot of cognitive fuzzyness. My memory was being effected. And every now and then I do experience in numbness of varying extremes. I'm very sensitive to the weather. Too cold, I'm shivering, too hot and I feel like I'm dying. I've got a lot of fatigue and weakness. Sometimes I get dizzy, and nauseous. I get terrible headaches.

Now on top of wanting to collect information I am also wanting to hear what people thing of the rebif shot? The neurologist read me a list of medicines and how they were administered and asked me to pick one... needless to say I could not make an informed decision, not really. He suggested Rebif, but I also know how the medicinal industry works. Sometimes I worry Rebif is doing more harm than good. I do have some pretty miserable side effects. It seems three hours after my shot (on the dot), I wake up with these gripping, shivering, chills. Too cold to stay in bed, but too cold to get out of it either. I'm tired and exhausted the next day. Sometimes the shots hurt. They usually always leave large marks on my skin, like a bruise. I dread shot night.

I have noticed I have more clear-headed days than I used to and my fiance said he can tell a difference, but I still wonder if there's not something better out there. Just kind of wanting to hear from other people who have experience with this stuff. I'm new to everything and pretty lost. I mean, for a while my life kind of stopped after I got diagnosed...


I am taking a B-12 supplement along with daily vitamins, would there be anything else you might suggest?

Any information on anything would just really be fantastic!


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Re: This is the situation... looking for some wisdom.

Postby jackD » Tue Nov 18, 2014 2:52 pm

I recommend that you read my posting on how to maximize the interferon meds. There is a LOT of info that may help you as well as inform you how you can slow MS progression.

avonex-f5/topic4186.html

jackD

Here is a flavonoid and MS wisdom sample.

Info from my database on Flavonoids and MS.


http://home.ix.netcom.com/~jdalton/Flavonoids%20MS.pdf

http://home.ix.netcom.com/~jdalton/OxStress-03.pdf

http://home.ix.netcom.com/~jdalton/flav.pdf

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Re: This is the situation... looking for some wisdom.

Postby NHE » Wed Nov 19, 2014 12:15 am

hmimcclellan wrote:I am taking a B-12 supplement along with daily vitamins, would there be anything else you might suggest?


Green tea, turmeric, omega-3 fish oil, vitamin D3, magnesium (in the citrate or glycinate forms). Regarding B12, have you had your levels tested? Do you know what the results were, e.g., in pg/mL? Also, it's best to use the methylcobalamin form and sublingual also in case you have absorption problems. In addition, have you had your vitamin D3 levels tested? Many folks with MS are low. See introductions-f20/topic24951.html#p226483
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