Need some honest advice

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lgelb

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A low-dose TCA can help with sleep, which in turn can calm the jumpy muscles. It can also help reduce pain that comes from irritated nerves. So it is for physical symptoms, not your mind. TCAs are no longer used at high doses for depression because there are better options.

A followup of a month is appropriate to help decide if this is something you want to try or if things have gotten better. If they do, as is likely, you can cancel the appointment so it's available for someone in greater need.

Brisk reflexes are not uncommon, nor fasciculations. When no disease shows up, we say that they are "normal variants." If every ache, pain, twitch or cramp were sign of a disease, you'd be ill indeed.

As Tillie says, the EMG was not done in the wrong places. The hallmark of ALS is that muscles you think aren't doing anything show up as abnormal. So the fact that it was normal in all muscles tested says it all.

Best,
Laurie
 

sam3030

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Thank you to both of you for taking the time to reply. At this point im going yo try the medication the docs described and try and switch off from the forums and anything google related for a couple of weeks . Hopefully things calm down a bit. My brain hurts from all the stress and endless thinking .

Thanks again and stay safe
 

sam3030

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sorry to come back to this . a quick question... with my symptoms still ongoing and the doctors stroll trying to track down a cause I did a CK test . it's came out at 160 U/l . I think the reference range is 30 to 240 or so . The doc mentioned it's in normal range however a little on the high side of normal. does this number translate to anything neuromuscular related ? at the values I'm seeing ? does simple walking or a light bike ride effect this number much and does it have anything als related . I asked the doc these questions but he said the reference ranges for this value vary so much that they mean nothing on their own . so why test it ! he said more so for trends ... do I even bother doing this again on a few weeks or just admit nothing to see here and move on ?
 

lgelb

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Only intensive exercise could affect this number, not walking or light biking. High normal is nothing to worry about but if he wants to repeat it (or is that you?), it's probably once more to make sure it doesn't spike, which I doubt. This level is not correlated with ALS.

I'm in the "nothing to see here" as I would be for most "high normal" lab values without a clinical correlation. After all, "moving on" means you go back to your healthy life, perhaps with new appreciation for what the unhealthy deal with.
 

sam3030

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thank you ! yeah I think his suggestion of another test was following on from a concerned look on my face I think . when I mentioned I was having fatigue talking and my face feels tired all the time , he was chasing myathina gravas. he also added CK to the other 2 tests for 2 immune tests for that disease . I forget their names . still waiting on those results as they take a while . I might just wait and see how they come out before retesting anything . thanks for the input
 

sam3030

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sorry to bring this up again. I'm still having issues . and I've still got zero answers . all my tests keep coming up negative ! I'm now twitchjng 24/7 mainly in my calfs . I have constantly got this feeling of ants crawling all over my lower legs now . I'd I look at them I can see lots of little twitches everywhere ! they are constant and get much worse after excercise . My right side of my body is also starting to feel funny . it's not so much weakness but more so intolerance to any sort of physical activity . The strength seems to be there but I give out very quickly . for example I was using a spray bottle in my right hand and after a few squeezes of the bottle my fore arm is dead . this doesn't happen with my left side . same with walking . i can walk but the leg feels very stiff and not fluid like the other leg . if I go on my tip toes my right leg would just give out way before my other leg felt anything .

I've now seen 2 neurologists who both have given up basically and said strength is there on examination but they cannot explain my endurance issue with one side of my body . they also cannot explain the constant 24/7 twitching.

I've been seeing a phsycologist who obviously is trying to convince me this is all in my head . so far it helps somewhat with the anxiety but I'm still.left with the annoying feeling of 24/4 twitching in my lower limbs , twitchjng that wakes me from sleep and something that is going on on my right side of my body .

My question is, at what point do I just give up and live with this whatever this is , and at what stage do I ask for a second emg . so far the neurologist are saying it's not als and they see no reason for a second emg . something is going on but they don't know what it is so they are pinning it anxiety because they cannot find anything else . apologies in advance I know my problems are nothing compared to what people here are going through but I can't seem to get answers anywhere else and my doctors have just given up.
 

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There is a third option don’t ask for another emg don’t ask if you have ALS. Ask what is wrong with you. It really doesn’t sound like ALS and you have 2 neuros and an emg saying no.

if I were in your place I would try to give the psychologist a real whole hearted try. If you do and things persist they may become an ally when you return to the medical doctors. Whenever you do see the medical doctors don’t try to influence their diagnosis. Present your symptoms; don’t ask for specific tests
 

lgelb

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Sometimes there can be vitamin and mineral deficiencies, not always seen in blood work, that cause or worsen such feelings. I would be sure you are getting enough electrolytes in the right balance (keep a food/symptom diary) as well as B vitamins, and I suspect better sleep would do no harm. And of course, keep hydrated.

It is easy to wish for an explanation of everything, but if there is none, as seems the case, then self care step by step can often help you feel better, even though it is harder than chasing "the answer."

Best,
Laurie
 

sam3030

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thank you for both Ur replies . Lori I think U are spot on with chasing an answer may not be be the right path . I admit to having anxiety and so far I've gotten through it in life by getting fairly clear cut answers. for example you can getting a pretty difinitive tests to rule our cancer or heart issues . it's a plain yes or no. The trap I'm in with neurological issues and als more specifically is no one can categorically tell me me yes I have it or not I don't . the best I get from doctors is "at this time there is nothing sinister. come back if something changes " . my phsycologist thinks this is where the problem lies. being able to accept being alive presents risks . nothing is difinitive. but I'm working on it . The constant physical symptoms don't help .they are a constant reminder that something is going on . but no one can explain it . it seems in the world of neurology there is a lot of this unexplained symtoms ! I'll lay off the emg and keep working with a phsycologist as suggested . I've also booked myself in with an integrative doctor to try and look at this more holistically . maybe that leads me to some solution to get back to normality ( even if I get no explanation )

thank you both again for your input and advise.
 

lgelb

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Be careful of integrative medicine -- there is a lot of sleaze out there that is worse than any problem that you have.

I think you are indeed looking at the "do I or don't I" question the wrong way. You could wake up tomorrow and find out you have cancer. But for today and the foreseeable future, there's a strong consensus that you don't have ALS. No one is unsure but you. It is standard to say, "Come back if something changes." Your plumber would say it, too.

As for "constant physical symptoms," there is no one here that doesn't have something wrong regularly to some extent. The question is, can you live the life you want to lead anyway? That's what the psychologist is for, to help you see how.
 
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