Patty
Forum Replies Created
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It seems like most people have symptoms on the left side first??
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I would get cramps in the back of my thighs when lying down and bending legs back in bed. My left foot started slapping the ground when walking. Prior to that I had surg. For carpal tunnel and tendon transplant because I couldn’t pinch with thumb & index. Another surg because my index was floppy. The physical therapist suggested neuro check because I wasn’t improving.
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Hi. Thank you to everyone for replying to my question. I receved my Relyvrio yesterday and am waiting to start after the weekend because I was not sure of side effects. I took Riluzole for 2 months but stopped because I started having festiculations jumping all over my body plus fatique and knee pain. I startedRadicava ORS . My balance got really bad after the first week so that I was holding on the walls so as not to fall. I didnt know if it was the meds or progression. I stopped taking it after I spoke to pharmacist who said reactions usually occur in the first week. So thus my trepidation beginning Relyvrio. The pharmacist suggested to swish mouthwash before drinking it and suggested milk and a big meal afterward. He also said bananas were good. He said fruit juice would make taste worse. Also if side effects like nausea, try to stick with it the first 3 weeks and they should get better. So ???? here’s hoping.????
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Please answer a few Questions concerning having physical therapy: Would you get a prescription from primary care doctor or from a neurologist in order to obtain physical therapy? Do you go to an ALS trained therapist or do you think that all therapists would be able to treat ALS patients? How about if ALS clinic does not recommend physical therapy? I feel that it would benefit me.
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Has anyone started taking Albrioza? I would like to hear how it affected you and also about the side effects. Thx.
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I am considering an afo due to foot drop. I walk better barefoot than withshoes and a brace to hold my foot up attached to shoe laces of tennis shoe. Its more difficult to get standing from sitting on a chair with the shoe . With afo how difficult to get from sitting on a commode to standing?
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Susan, i am happy to read about your experience with your meds. I was diagnosed feb. 28. But had symptoms prior. I took riluzole for a few months and experienced twitching all over my body, pain in my ankle, that which I hadn’t experienced before.. Also fatigue. I was put on Radicava ORS. I took it for 3 months. After the first week my balance got really bad that I felt I could not stand alone without holding something. I wasn’t sure if it was the meds. Or als progression. I spoke to the pharmacist who said side effects usually happen within 1st week. So I am using a rollator now, where before a cane sufficed. I have fallen several times. Now I am also waiting to see if I can get the Amylyx. Good luck to you. I do want some med to help! I take a couple different vitamins.
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Thanks for your responses to my question. Your answers have helped. I was using a cane and after a couple falls, I have given in to the rollator.I have drop foot on left and I have had a few falls; always attributing them to: my shoe got caught on the rug, or my shoe got stuck at the bottom of the stove as I was trying to turn, or my barefoot got stuck to the floor. After I broke my wrist after a fall while using a cane and my shoe caught on the carpet while on a getaway, I finally did “give in”, and it does make it easier to walk and I feel more secure.
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Physical therapist did suggest doing exercises on my own, ie. walking, recumbent bicycling, stretching.
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No. I inquired about P.T. At the ALS clinic at the Cleve. Clinic. The physical therapist and the dr. There did not recommend it. The physical therapist stated muscles won’t be built up, all therapists are not familiar with als therapy, and if the muscles are overworked, they will break down more.
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Bob, Just wondering what your symptoms were in 2010 when you were diagnosed.
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Thank you for replying.