Multiple Sclerosis (MS) Support Group

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melaniemic 05/26/2013

I have had a real rough month and I am getting scared again.:( Almost to the point when I was first diagnosed in 07. My legs went sooo weak sooo suddenly after I got a sinus infection. My PCP thinks its a rxn to the statins and my nuero thinks it's the MS. this was last month, I usually have come around by now. I am back onto copaxone and am dealing with the site reactions too. That hasn't helped my moods much. My legs are soooo weak and my balance is not good.

I have just recently started to inject manually. I find it much kinder to me than the autoinjector. But the itching and redness are what I remeber. I don't remeber feeling so weak ever before. Most of the time I just want to sleep.

ALL DAY LONG AND EVERY DAY???????

Will I ever feel myself again? Can some old timers here help me out some? Please I really need some encouragement here but I don't want you to feel sorry for me and give me the "You'll be okay, honey crap! I need the truth and some reality here. I am getting really frightened now.

princessgwenda 05/26/2013

I've ONLY used Avonex for a DMD myself, so maybe I'm not the person with MS that you'd like to hear from, but I'll just say this.

I think the weakness with your legs IS a MS thing even though you are on a MS medication. They do NOT stop every attack plain and simple. I know it sucks but that is our lives with this wonderful disease.
Maybe your neuro could get you on the 3 day dose of steroids (I usually have the 50MG of PREDNISONE Tablets, 25 each of the 3 days) to try to help slow up the attack that it seems you are in.
My primary Dr. does NOT think that dose is safe and will not give it to me! She wants to give me 4 pills a day over a month!!

The last time I needed to use the steroids was back in November when suddenly my backside was totally numb! It DID help it to slow and "get better" within a week! Our lives are just sooo fun.

melaniemic 05/26/2013

Thanks for your prompt response here. As I reread my post I realize that I didn't clarify that this is not due to the copaxone as I just restarted this after a 3 year break from it when I went on the LDN. that was great until I just couldn't handle the stomach issues that went with it. My primary said if it is the statins rxn it will take about a month to get out of my system. I have been stalling the steroids to see if it is the statins. Unlike most people that feel energized with steroids, all I do is sleep when I have had them, even the full round of five days and one gram per day. Steroids mess with my blood sugar on the low side, I am not diabetic. They also dropped my blood pressures to 80 and 90.

But..... you reminded me how insidious this disease is and how individual also. That has perked me up already. I know that no one can really know what we all are going through and answer my questions. I just need the support that you gave me. Thanks so much.

ChrissyH 05/27/2013

You sound like me back in late Sept.-Late Nov. I had a horrible UTI which floored me. I lost my ability to walk. I had 4 month of PT to get back to normal--I'm almost there but still have a fear in the back of my mind that my legs will give out. You are certainly not alone. I've been dx since '04 and still felt like it was the beginning.

Think about steroids to get u over this hump. ---- I know steroids can be unliked. Did ur Neurologist ever offer Athar (I know I didn't spell it right) It get you over the hump without the ugly side-effects.

I hope this helped some. :)

melaniemic 05/27/2013

I asked a while back and his reply, along with a raised eyebrow, was that it was ridiculously expensive and had similar side effects anyway. I sure hate how finances still have to govern our treatment. Thank you Mr. Pharma Industry!!!

ChrissyH 05/27/2013

Won't ur insurance cover it?

When I used the insurance from the School District I worked at, they were fussy about what they would cover. Now that we are on my husband's insurance (He is a police officer) they cover just about everything without question.

deleted_user 05/27/2013

I agree with Chrissy..... it's really not the doctor's place to determine whether or not a medicine is too expensive or not. If your insurance covers it, then there should be no issue. Even if your insurance DOESN'T cover it, then it's up to you to figure out how to afford it or to work with the drug companies if you want to.

You aren't alone in the fatigue thing. I've been like this for the past 4 days. I could sleep non-stop except for eating and going to the bathroom. There are drugs you can go on to help with this issue, but I'm so sick and tired of drugs that I can hardly stand it. For me, it's a phase, and I do go back to feeling at least 80% normal. So, you aren't alone. Force yourself to get up if you can, and if nothing else, just shower and get dressed. If I can manage to do that, I usually get the energy to do a couple other things too!

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