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Confused about progression of symptoms
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Thank you for your response Lisa, I really hope that you will receive answers this Friday. Guess the questions you ask depend on your Neuro. If you are still open for other causes he will surely not put you in the anxiety corner but with a confirmed atrophy and your increasing symptoms you have definitely the right to ask for another Emg.
The NFL blood test is just a very new biomarker that is done here additionally to the mentioned EL criteria. Many people with ALS symptoms get tested here at the Charité in Berlin its around 100€ per Test; increased NFL markers also show how fast the disease might progress. Even if the Emg criteria still has to be met to get an ALS diagnosis, the test is at least sth for oneself to possibly rule out ALS if the markers are low. Further I read on another forum that a woman with confirmed atrophy had a hormonal issue causing muscle waste :
https://www.als.net/forum/yaf_postst57502_Eurika-I-found-the-cause.aspx
Just try to help a little as I know how it feels like to be stuck in limbo with ALS. My hope is still Myasthenia gravis although the twitching and cramps (which I have too) do not occur in that disease.
Just hope to help a little. Keep us informed. Best wishes
Kiki
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Hi Lisa. I’m sorry to hear of your issues, and a possible ALS diagnosis. I was diagnosed 5 years ago, and here is what I have learned. I continued to exercise at normal levels for about 3 years after my first symptom. Head drop impacted my ability to paddle on the water (dragon boating was my sport ), but I continued to walk and lift weights until my balance got bad, and I went into a wheelchair. I kept journals of my workouts, and learned two things about exercise and ALS:
1- Be consistent. The old addage “use it or lose it” applies to everyone, but exponentially so for us.
2- We don’t recover like healthy people. Most athletes push themselves to failure, recover, and do it again to build strength / stamina. If you train like this with ALS, you can cause your muscles to lose strength faster if those muscles are impacted. So, train in moderation.Best of luck to you in your journey.
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I agree with your observations, Mike. “Be consistent” – – my body needs daily, gentle therapeutic movement. Skipping a few days leaves me feeling stiff and with uncoordinated movement. Regarding “recovery” – – yes, we can’t push ourselves like before. Instead, I break up what would be an hour routine into several 15-20 minute sessions throughout the day. And no heavy weights, strain or pushing. I even had to learn to regain what I lost; one repetition at a time:
The Power of Just ONE Chair Squat
I follow the advice of those who research exercise and ALS: one hour following doing exercise your body should feel recovered. If not, that’s a signal to adjust what you’re doing down a few notches.
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Hi everyone, I can’t believe I posted this thread 3 months ago and I am still confused about the progression of my atrophy. I find I am back to square one again, researching things I have already looked at 25 times. It is so noticeable to me how many more tiny veins I can see on the top of my hand and how more hollowed out my left palm is, my wrists are ridiculously thin and my forearms look carved out, very hollowed areas. My shoulder bones are more noticeable and look like I am hunched forward, my pectoralis muscles are gone, my bicep on the sides of my arms are indented, ankles thinner. The back of my calves are flat with a small bump of muscle at the lower end of my calf. My right thigh is noticeable much smaller than the left.
This is all progressing, time is going by but I am still able to do things. I feel weakness and pain in my fingers hands and wrists when I push to do too much, an ache sets in after.
I really feel like I am either out of touch with reality and I am exaggerating somehow what I am seeing or….or I don’t know what. Literally everything has been ruled out.
I will be speaking to a genetic counsellor on Tuesday. My neuromuscular Dr. set this up because a gene came up for Limb Girdle Muscular Dystrophy but I only have one gene so I am only a carrier.
I am really struggling mentally getting more and more depressed, doubting my own eyes and what I see. I just cannot understand how this can be happening to me and I do not have a diagnosis. I am at a loss for any hope of any answer. I don’t know how to keep dealing with the atrophy and weakness without any hope of a diagnosis. This is pure hell …I feel hopeless and lost. It’s impossible to live like this in constant thought and worry.
Thanks for reading. I needed to get this out. I am so down right now.
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- Lisa , hope your doing well. I’ve been going tru the same as you. Atrophy of my left leg ( quit severe ) and my right gluteus. My hands and shoulders ache and my emg showed chronic denervation also and a muscle in myvleft leg that the nerve died to. Feeling some twitching and shoulder tremors also.Still can walk and talk well. Was told no ALS and have another appt in 1o weeks.. Please hang in there . Keep in touch.
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More confusing symptoms continue. I had an internist looking into my chronic cough. This led to a lot of Pulmonary Function Testing. She finally said she can find no mechanical reason for my cough and finally tested the strength of my breathing muscles. I just recently got the numbers only (no report yet) from my GP and it showed: Maximum Inspiratory Pressure MIP of 48% of predicted 120%. The Max. Expiratory Pressure MEP was 71% of predicted 146%. From what he could tell me which wasn’t much because he said he does not understand it to that level is that my breathing muscles are weak. The internist told me in January that if she could find no reason to explain my shortness of breath on exertion and constant cough without being able to clear my throat all the time she would send a letter to my neurologist. That has not happened yet. I am still seeing progressive atrophy of my shoulders, chest, elbow, forearms/wrist etc.
I had a real shoddy second opinion at a different neuromuscular centre in which the doctor only praised my previous doctors. He spoke to me for under 10 minutes, did some clinical in under 10 minutes, all while I was sitting yet reporting that I had walked on toes and heels etc. …you get the idea. My emg was less than 10 minutes and he checked only 6 muscles…asked me which ones were bothering me and what side I wanted him to test. He did say that I could have a second muscle biopsy this time on my bicep but that I would need a surgeon to do it. That was two months ago, no further word from any doctor. Meanwhile when I am laying flat in bed I do find it harder to breath. Having some weird issues waking up feeling like my throat is closed up. 🙁
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Diagnosed over this last summer. Started mostly as loss of clear speech. Muscle twitching became regular. Have seen atrophy in the hands. Right side weakness. But still functioning. I swim laps 3 times a week. Have dropped number of laps by a third. Try not to push it, too much and I can get pains in the muscles, but still love the water. Will be sad when I can’t go but for now, each day is a gift.
Keep doing whatever you love for as long as you can
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