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What treatments did you try before knowing you had ALS?
Many pALS can trace back to when their symptoms first appeared and, not knowing the cause was ALS, try simple methods to resolve the symptoms. Massage, stretching, vitamins, and many other self-care treatments are among the options we try.
What early symptoms did you have, and what did you do to try to make them go away? How long was it until a doctor diagnosed you with ALS?
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4 Replies
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My early symptoms were muscle cramping in my thighs, so I tried massage therapy and stretching movements. Also, when my feet became weak, I looked for better shoes, arch supports, and foot massage. Of course, nothing made the symptoms go away. When I found out I had ALS, I knew the problem wasn’t my feet or leg muscles – – it was my body’s internal systems – – the buildup of oxidation that was killing off my motor neurons. Riluzole and lifestyle modifications are helping to keep the oxidation lower.
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I was getting severe cramps right under my rib cage and I now know that it was my diaphragm cramping up. I saw so many doctors and had test after test for nearly 10 years before I was diagnosed. My breathing declined significantly in a short period of time in the Spring of 2023 and my doctors suggested I get a feeding tube. I was reluctant, but decided to do get one as a precaution. My doctors explained that if my breathing declined much more I would not be able to go under anesthesia safely. Has this happened to anyone else?
Amanda
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I fell at a church camp and went home. I had pain from the fall and so I did PT, to no avail. I went to my PCP who found a rash so he sent me to Dermatology. He biopsied it and found elevated CPK but no skin issue. On to the Rheumatologists. Extensive work up to me seeing the results and thinking that it may be ALS. No pain now, but drop foot right side. Now to Orthopedics. Waited bc MRI and orthopedics didn’t agree. So I waited. Pain increased and now I have zero patellar reflex on drop foot side. On to Neurosurgery. Did laminectomy and fusion S1-L4. Now PT again and not to my surprise, I didn’t get better. After 5 neurologists, I’m told ALS. I knew it. I’m an old hospice nurse btw.
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oh my Eric, you really went through “the wringer” before finally being diagnosed. I hope your symptoms have slowed down and are manageable. Thank you for sharing your experiences with us.
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