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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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9 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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Sounds like my situation too. I became very weak in a rehab center. I managed to transfer back home after I had some remodeling done to accommodate a wheelchair. I’ve hired several nurses to help me part-time. One is heavy into muscle memory and nutrition. I’m slowly getting stronger. I go to the local VA hospital for medical care.
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My early symptoms in 2022 were a general arm and leg weakness, with the arms being the most obvious. That started a conversation with my GP who eventually referred me to a neurologist who performed many tests and while still questioning ALS or other options recommended me for IViG infusion therapy. I did that in late 2024 every 4-5 weeks for 4 months with absolutely no benefit. While theorizing ALS the neurologist recommended another opinion and I saw the Drs. at RWJ-Rutgers University Hospital (ALS Clinic) in New Brunswick, NJ who did their own testing (EMGs and blood) and confirmed ALS. Though projected as “Progressive-slow” I see daily degradation and arm/leg capability reductions along with an increase in throat mucus and swallowing issues and have finally received my NJ authorized M.A.I.D. (medical aid in dying) script so that I can determine when “enough is enough” … I am in hospice care (though they visit me at home) and see the trend-line progressing regularly and at times rapidly. …
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K-Allen, I am sorry to learn of your problems getting diagnosed. As you are on hospice care, I assume you opted to not take any medications… ? Are you doing anything to help alleviate or manage your symptoms? (ie., exercise, modifying your diet, mental stress reduction techniques, etc.)
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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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Amanda, now that your breathing has improved from your medication, do you still use your feeding tube? Will you keep it – – has it given you any problems over time?
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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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I had a back injury in 1979. It got worse over the years and in 2014 was crippling. I went to the MD, they sent me to PT, and then I ended up w/foot drop. The VA did a 4-level lumbar fusion (Dec 2015) to fix it, but it did not. In Apr 2015 (4 months after foot drop) I started fasciculations/cramps. The VA neurologist said I had BFS. Then I began getting weakness in my L/Leg and fasciculations spread to my R/Leg. In 2016/2017, the VA shoved drugs at me like candy, but they did no good. I went outside the VA to a neuromuscular specialist at an MD clinic. Over the next 2 years, he did everything in the book, and finally I was diagnosed w/ALS. First diagnosis was Oct 2019, VA confirmed it May 2021. And here I am today, a 10-year survivor.
My brother did not get so lucky; he was diagnosed in October 2015, and on January 6, 2016, he left us. We are polar opposites in that regard.
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