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Newly Diagnosed
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Newby001 posted:
After three years of going back and forth to the doctor, and 15 pages of refills of medication for everything but MS...I have a diagnosis, two days ago. I don't even know how many lesions I have because once he told me I have the lesions, everthing else went like blah, blah, blah, and I almost hit a car when I left, completely unfocused. The leg pain was the first indicator...overnight they cramped up so bad I couldn't walk. They prescribed one narcotic after the other, even after I ask them not to, because the narcotic makes my leg cramps worse. It had been so long I started documenting when I had no pain, and it one one time last year when I had a sinus infection, and was put on Medrol 10 mg. I had absolutely no pain for one week. I was cleaning the house, mowed the lawn, cooking dinner, cleaned my closet..a hold host of things until those magic pills wore off, then like a ton of bricks, Bam the pain was back. Most days you don't want to move because of the pain, but I have a stationary bike and the first time I rode it I felt like crying but now I ride 5 days a week for twenty minutes. It wont improve the MS but hopefully it will help me stay moble alittle while longer. The Medrol, still help on the really bad days but if you take it too long you will gain weight very fast. I refuse to be depress, I am unemployed after being laid off and don't expect any employer to want to hire me walking like this. Best wishes for everyone with this monster. I can only do my best.
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hackwriter responded:
Dear Newby,

I'm sorry to have to welcome you to "the club," these are unhappy circumstances; of course, nobody wants a membership in the exclusive circle of MSers, but once we get thrust into it, we do better over all when we begin to reach out to others. I'm glad you shared your story, it's something we can all relate to. And it's perfectly normal to go through a terror and grief period after diagnosis, I certainly did. It does get better, I promise.

Have you tried any muscle relaxers for the cramping? I take baclofen and it does help me. I've also tried Lyrica for pain and that helped as well. Gabapentin is similar to Lyrica, a lot of MSers use that one, too.

It takes a while to find the symptom meds that work best. I hope you'll continue to explore your options and discover which ones keep you most comfortable. It's great that you exercise, it helps circulation and can strengthen the muscles that are not affected by nerve damage, which in turn can improve our balance and coordination.

You might consider filing for SSDI if you can no longer work.

You sound like a fighter, you're going to be okay. Please come back to the forum as often as you'd like to vent and share information. Others will benefit from reading your words. Take care.

Kim
 
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Newby001 replied to hackwriter's response:
Thank you Hackwriter...I am very happy to have just found out what is causing this awful leg pain because my legs are my signature me. I have been on all those medications you mentioned, within the last three years, a true genny pig with no diagnosis, until I threaten a lawsuit for billing my two insurances with no diagnosis. My neuro doc was upset when I told him the pain mgt people put me on baclofen at night for the worse cramps, after the course of spine injections for back pain I didn't have until receiving the injections, my Neuro doctor took me off Baclofen. Maybe the overan cyst side effect, who knows... I was only on it for 4 days, not long enough to know if it would eventually work. The rest of the meds were taken for at least six months each with no effect on this monster. So until these sticks actually cave to this mess, I am going to work them like horses on that bike, 5 days a week. I also workout with light hand weights for upper body strength. And I have purchase a inverted bench press to strengthen my hamstring muscles. I am nowhere near where I should be weight wise...but who is, right...I am working on it and if I was perfect, I would not have MS!!! I am Blessed to still have my humor...I am slowly informing my friends who I feel can handle the info without looking at me like a freak. Some don't even know what MS is so I am telling them to google it. It was hard enough to tell the get the doctors to diagnosis it, and medicate it without guess work. Comming out fighting!!!


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