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    Need Help

    A year and a half ago my left eye went almost blind on me. After cataract surgery, steroid injections in the eye twice and a few different doctors, I finally found one that ordered a brain and full spine MRI. Over the phone I was told that I have MS. After meeting with an MS specialist I was given my treatment options.

    The least side effects and best sounding drug was Copaxone so I went with it. I have now been on it for exactly a month. The very first shot I was doing quite well until 12 hours later. I was standing for about 2 minutes when I started seeing flashes of light, was losing control of my extremities, and was completely soaked in sweat. My boyfriend helped me to the couch to lay down and put a cold compress on my forehead and then I was doing much better. So far that has been the only episode like that so I figured I'd keep going with it and see what happened because I know it can take a little while to get used to the drug.

    Over the last month I've been out of the house maybe 3 times. I have a general "don't feel well" thing going on, no energy to do anything, insomnia most nights, shakiness when I walk, extreme hot flashes radiating mostly in my back and just an all around lethargic attitude. I was dealing fairly well with all of that until yesterday. Honestly if someone had walked up to me with a gun I would have said "please shoot me". It's the worst day I have had thus far and over the last month it's just been getting increasingly worse rather than better.

    Because yesterday was so bad I skipped my shot. I took some Tylenol PM and had a wonderful nights sleep. Today I was able to actually go out and have dinner with my boyfriend and do some much needed shopping. Now that I'm home I don't have a lot of energy, but I at least feel like myself. I hadn't felt like myself since I started the shot. So basically I went to the doctors to find out why I couldn't see out of my left eye, was told I have MS, put on Copaxone and NOW feel like I have MS. Prior to the shot I never felt like that.

    For years I have wondered if something wasn't quite right, but I was also involved in a bad car wreck in 2000. Since that time I've had a lot of MS type symptoms, but just assumed that it was due to the brain damage from the wreck. So I guess my question is... has anyone else felt like this or is my body just not liking the drug. I'd really like to go to a more holistic approach if anyone has any suggestions. Thanks for reading and for any input you may have

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    I was on C for about 1 1/2 yrs after being on Rebif for 2yrs. Rebif screwed me up bad enough but then C pushed me into migraines and worse. Awful flu-like symptoms similar to yours. And I was working full time during all of this.

    I've been off all DMD's for nearly 10yrs and refuse to go back on. Neuro is understanding but still asks if I would reconsider ...

    Some people thrive very well on these MS drugs. I am one who doesn't.
    Karen

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      #3
      Thanks for your reply Karen. It helps to know that someone else has had issues with C. I read thru the forums here and most people really like it and that is wonderful, but I was beginning to feel alone in my struggle with it. I'm so sorry that you had a rough time as well. If you're off all drugs, what do you do for your "treatment". I did a lot of research last night after my post and have decided (along with my boyfriend) to do the Paleo Diet according to Dr. Terry Wahls. She has done a lot of research as a medical doctor who also has MS. I'm actually excited about it and after two days of no shots, I am finally feeling like myself again. That makes me happier than anything. Anyway, thanks again for your reply

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