- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
I'm always baffled to read the wide variations in how this disease makes its march through our PALS' bodies. Some have sudden complete muscle failure that makes a limb unmoveable and others experience weakening first. Is it possible that in some all the muscles in a limb fail at the same time and in others muscles go at different rates, leaving some strength for a time? I'm not up enough on my anatomy to know if this is even possible--perhaps someone can chime in. There's so much we don't know--why in some would the muscle go all at once while in others it weakens first? I don't know how else to exlain the gradual weakening atrophy that some experience while still having some use of their limbs.
Unfortunately, every variation gives a DIHALS something to grasp on to if he or she is determined to convince us that ALS is the answer. It doesn't seem to help to mention how rare a presentation is, since those seeking a diagnosis seem bent on being so special that only the rarest disease will serve their purposes. I honestly hesitate to post publically on my husband's initial symptoms for fear of feeding those who comb the internet for just the description they seem to need...
sm-bs, I hope you see what a conundrum this is for us. We want to help but we don't want to feed fears inappropriately. I may have missed it, but I don't think the question you asked about about a normal emg early in progression was answered. I can only say that Ive seen posts where people were sent home and told return months later if symptoms continued to progress. Some take years to get a definitive diagnosis and others are slammed with it out of the blue. If you've combed this forum, you know that there is NO definitive answer. ALS is very rare, but it happens, and everyone seems to be different. In our case, all symptoms were written off until my husband started stumbling and falling when he should not have. That seems to be the gold standard. Everything else can have a myriad of other causes. If you've been told that you don't have ALS, please try to enjoy your days and nights. If your symptoms progress, return to your neuro. If you think it's ALS, find one that specializes in MND. Unfortunately, I don't think there's a shortcut to recognizing this monster. We just don't want to see people without ALS, who are the majority, waste their lives worrying about it. I am personally thankful that I didn't know anything about ALS when my husband's early symptoms started. It was bad enough knowing something was wrong--this knowledge would have robbed us of several wonderful, hopeful years.
Unfortunately, every variation gives a DIHALS something to grasp on to if he or she is determined to convince us that ALS is the answer. It doesn't seem to help to mention how rare a presentation is, since those seeking a diagnosis seem bent on being so special that only the rarest disease will serve their purposes. I honestly hesitate to post publically on my husband's initial symptoms for fear of feeding those who comb the internet for just the description they seem to need...
sm-bs, I hope you see what a conundrum this is for us. We want to help but we don't want to feed fears inappropriately. I may have missed it, but I don't think the question you asked about about a normal emg early in progression was answered. I can only say that Ive seen posts where people were sent home and told return months later if symptoms continued to progress. Some take years to get a definitive diagnosis and others are slammed with it out of the blue. If you've combed this forum, you know that there is NO definitive answer. ALS is very rare, but it happens, and everyone seems to be different. In our case, all symptoms were written off until my husband started stumbling and falling when he should not have. That seems to be the gold standard. Everything else can have a myriad of other causes. If you've been told that you don't have ALS, please try to enjoy your days and nights. If your symptoms progress, return to your neuro. If you think it's ALS, find one that specializes in MND. Unfortunately, I don't think there's a shortcut to recognizing this monster. We just don't want to see people without ALS, who are the majority, waste their lives worrying about it. I am personally thankful that I didn't know anything about ALS when my husband's early symptoms started. It was bad enough knowing something was wrong--this knowledge would have robbed us of several wonderful, hopeful years.