Hand Tremor/Clonus, Spacisty in Both Hands, Vibrations/Tingling in Feet & Fascillations in Feet/Legs & Upper Body

mhewitt2222

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Also why hasn't a neurologist referred me to an ALS specialist?? I took the advice and didn't mention ALS as a concern and now look where I am at (back to the drawing board). I've got classic ALS symptoms and they are not going that route. People know their bodies better than doctors. Sorry just venting and scared. I'll sign off.
 

Nikki J

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No you asked for als specialists so I offered some places. You wanted an emg of fingers. There aren’t muscles there to emg so impossible. No one emgs feet that I know of. The relevant muscles are above. The doctors know anatomy and physiology. My ankle onset was from a leg muscle. The emg doctor located it in one stick ( and did more muscles of course to check for spread
 

Bestfriends14

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Drop foot is caused by the calf muscle failing, not muscles of the feet, that's why EMGs are not done on feet. You have had four clean EMGs and multiple clinical exams that do not point to ALS. Congrats for not having ALS. That's something to be happy about, not to continue going after.

I hope you find an answer as to what is going on. Your answers, unfortunately, will not be found on an ALS forum.

Take good care and best of luck.
 

mhewitt2222

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Gotacha on the feet. My issues are on the sides of the feet and there are muscles there. I suppose they think it would show up above too. My weakness is when I spread my fingers apart and they close them and there is weakness there. So can't they emg the muscles in the hand that power the spread of those muscles? Just find it curious when I've got a tremor in fingers especially when I try and hold them together why they wouldn't emg those (dorsal interossei). A tremor can be a sign of muscle weakness.
 

Bestfriends14

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Please take further questions to your doctors about your concerns. This is a forum for those with ALS or their caregivers. Folks here can provide a high level of reassurance, but being that they have this disease or are caring for someone who has it, there's simply no more energy to handhold anxiety. Again, anymore questions are to be addressed by medical professionals.

Take care.
 

mhewitt2222

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Last thing I want to add why I think so many people come to this forum. It's wisdom & guidance from experts.

All I am asking is based on your guys collective experience and stories (which you should be recognizing more). I think someone with a disease in their body or takes care of someone with that disease knows a heck of a lot about that particular disease. I'm sorry but the best Specialist in the world on addiction doesn't truly know addiction until he/she has lived it. Period.

Only thing I would truly, truly appreciate is your opinion on if I should push for an ALS Specialist or not.

I only ask this because I value people who have lived a disease like this opinion. I'm a recovered alcoholic and get some of my best advice from alcoholics. When people come to me and they think they have a drinking problem I share my story and knowledge with them and give them advice. Why do you think so many of the best counselors and addiction specialists are former addicts themselves.
 

ShiftKicker

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Seeing a doctor and asking them their decision making process with regards to what to further look for would be more productive than posting here. You've received a fair amount of advice, recommendations and information, as well attempts to reassure you. When we see that people are unable to stop asking questions here despite multiple requests they continue working with their doctors, we recognize what we are providing is insufficient to that poster's needs.

You've had multiple EMGs, plus seen more than one specialist already and you seem sure ALS is in your future, despite the clean exam results. Nikki has provided you with further info about where you might look to next, per your request, should you wish to pursue ALS despite your symptoms and emg results not indicating this eventuality to the specialists you've seen already. I'm not sure what more the people here can do for you.

Hopefully your doctors will be able to provide you the answers you seek.
 

lgelb

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As a paralyzing, fatal disease, ALS is not so subtle or difficult to find that it requires self-diagnosis. Your statements about where it starts, how it starts, and why you think you need to pursue it more are all incorrect, as noted by others.

Your analogy regarding alcohol dependence is apropos to the extent that those of us more familiar with ALS than you are telling you that you don't have a problem. If someone asked you, "I enjoy a glass of wine once a month -- am I an alcoholic?" I would imagine you would say no.

I would always get a second and possibly third opinion as to any proposed spine surgery. You do not mention PT, which would normally be considered first. That many people have more than one condition, argues against chasing the "grand explanation" for everything you have experienced. If you have RLS, it can be treated. If you have spinal stenosis, it can be treated. The really good news is that you don't have ALS, because the treatments available are nowhere near as effective.

No, you have presented absolutely no reason to see an ALS specialist, but, as Nikki pointed out, you are near several. If you are not going to resume your real life until you see one, pick up your phone if you are prepared to accept their verdict. Otherwise, I hope you can leave those scarce resources to those who need them and rely on the passage of time to reveal that you are simply not losing mobility to the extent that occurs in ALS.
 
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