Up late, worried and wondering...

[jc10]

Hi to all. Just wondering if chronic muscle cramping is a typical feature of als... I've been getting severe muscle cramping in my calves and elsewhere. My hands feel fatigued when I blow dry my hair, type on my computer, write with a pen etc. I have a hard time opening jars and often get a hand cramp from it. 2 of my toes on my left foot have started moving on their own, whch comes and goes. used to have a twitch in my left index finger but that seems to have passed. when i lie down in bed at night, you can see the muscles in my calves dancing around. i also get sharp stabbing pains and sometimes more a sensation of a hot needle being poked into my skin, these sensations happen all over my body. left toes fairly numb. left arm between elbow and shoulder sometimes feels numb. breathing is ok most of time but at times feels like it is an effort to breath and sometimes feel i can't get enough air and i just want to drink it in. have hard time with stairs, my legs just wear out and i feel a burn and have to stop for a moment. have had 3 falls in past 4 months, which is unusual for me, maybe just a clumsy spell. most all of my symptoms become much worse with hotter weather. the cramping gets so severe i'm sometimes afraid to drive my car. i have to put all my weight on my foot and even then my calf won't easily straighten out... side vision a little off and i can't look at anything that's moving quickly without feeling a bit dizzy and that includes simply moving my head from left to right quickly. so far have had brain mri which was normal. they did not look at my spine. 2 ck tests show modest elevation of 300 amd 291. dr. now wants to do an emg and i'm scared to do it. i'm 44, single mom, one child who is 8. thank you for reading.

 

[sportsfan]

hey jc10, your symptoms sound very similar to mine as i also had a high cpk reading saying mild inflammation.I had an emg done 3 months after all my symptoms started and it was clean so now i dont know what to think, cause the symptoms persist.The probelm with als is its hard diseaes to dianose apparently.If you think you have it get your house in order first.I also think its better to know what your dealing with but on the otherhand since theres no cure whats the rush as long as your financially prepared with wills, disability, etc....good luck....

 

[notme]

ALS wouldn't affect your eyes in any way. I see they did a brain MRI--are they checking for MS at all? (MS is one condition that can cause vision changes--optical neuritis) heat intolerance is also a feature of MS

Weakness with exertion can be a whole lot of things. Fortunately, ALS is only one of them--but remember, in ALS, weakness progresses and never gets better. It's followed by muscle death and atrophy.

My advice would be to wait for the doctors to decide. Hope that helped a little.

 

[jc10]

thanks for your response. yes the mri was an ms screening. i'm disappointed they didn't look at my spine as well. i think some of symptoms sound like ms too + my uncle has it. the emg sounds like torture via electric shock....of which i'm already getting more than enough of with the internal sensations + the fact that for the past 8 months it seems my body is absolutely full of electricity because i get static shocks ALL day every time i touch metal... those can hurt! so now i'm always trying to ground myself prior to touching the car door or touching a metal door handle. i've read that for some, the emg can cause a worsening of symptoms, have you found that?

I had a brand new sensation last night that jarred me awake...ever put your phone on vibrate? well it felt like that in a part of my ankle. it was a quick vibratory blast in a small area..only lasted a second or 2 but it really freaked me out!

these bodies of ours can be very mysterious can't they?!

 

[sportsfan]

hey jc yes the emg will be uncomfortable but its not as bad as it sounds ive had one a month ago.and from what ive read its the best tool for helping to figure out whats going on.

 

[kmendsley]

Sounds more like MS to me. I would ask doc for a spinal mri since it can show up there first before the brain. Also, the problem with brain mri's is that it sometimes takes years of symptomatic problems before anything will show up(plaque wise in the case of ms) on the scan. Even though you have obvious clinical symptoms. I would also check if you haven't already: potassium levels(yes this can cause everything you described...many people don't recognize this until it is way too low or too high and you end up in the hospital), Vitamin levels, thyroid levels checked, and lyme testing. All this can be done with just a couple of blood tests...diagnosing als is basically having to rule everything else out. Good luck.

 

[notme]

I agree with kellbell--sounds much more like MS to me, too. Without a spinal MRI and probably a lumbar puncture and evoked potentials, they can NOT rule MS out.

 

[Alyoop]

An EMG will not adversely effect you once it's done. It will not make problems with static worse. The most frequent causes of getting shocks is what type of shoes you wear, what the soles are made of. Weather seems to make a difference as well.

As the others have said, you need a more thorough MS review to count it out.

 

[ktmj]

By all means have the NCV/EMG done. It could be a host of things - don't dispose your doctor toward one thing like MS.

On a good note, I think you are having too many sensory issues for it to be ALS.

 

[jc10]

Thanks so much for your reply. potassium is fine, vita d and ferritin have been chronically low. have not had lyme testing. alt, ast and sed rate all normal as well. high folate but i don't think that's a big deal.. called in today to schedule emg and now they want me to do a 3rd kp in 3 weeks before doing anything else. so more waiting...

thanks again! you all are so nice.

Sounds more like MS to me. I would ask doc for a spinal mri since it can show up there first before the brain. Also, the problem with brain mri's is that it sometimes takes years of symptomatic problems before anything will show up(plaque wise in the case of ms) on the scan. Even though you have obvious clinical symptoms. I would also check if you haven't already: potassium levels(yes this can cause everything you described...many people don't recognize this until it is way too low or too high and you end up in the hospital), Vitamin levels, thyroid levels checked, and lyme testing. All this can be done with just a couple of blood tests...diagnosing als is basically having to rule everything else out. Good luck.

 

[sportsfan]

hey jc im in kinda the boat you are in except that i had a negative emg but my symptoms just wont subside.You are doing the right thing by having an emg done and checking your cpk level agian.harass your dr. to see if he can get u in earlier.I know how you feel sitting around in limbo with symptoms going on that could be als related.Im gonna have to get myself into a nuero as well and have another emg run.Goodluck and you can shoot me a message when you need to talk about it.

 

[jc10]

congratulations on the negative emg! that must have been a relief! sometimes i wonder if we're just sick because of all the poison all round us, and in us! i mean think about the gm foods, the high fructose corn syrup, artificial colors, msg, radiation, flouride, lead....and on and on... it's everywhere and i'm sure it's effecting our bodies in ways we don't yet know about!

what are your symptoms? do you have a lot of cramping too?

hey jc im in kinda the boat you are in except that i had a negative emg but my symptoms just wont subside.You are doing the right thing by having an emg done and checking your cpk level agian.harass your dr. to see if he can get u in earlier.I know how you feel sitting around in limbo with symptoms going on that could be als related.Im gonna have to get myself into a nuero as well and have another emg run.Goodluck and you can shoot me a message when you need to talk about it.

 

[trfogey]

jc10,

You first posted here a year ago, complaining of symptoms very similar to what you complain about now. If the change in your condition since last June has been so mild (or non-existent) that you are just now getting to a neuro to find out what it is, then the chances are very good that you don't have ALS.

Just be patient and let your neuro do his job, including the EMG/NCV. You haven't given much of your medical history here, so we don't have anywhere close to enough information to give you any better advice.

 

[notme]

One more thing Jc---didn't you say your O2 sat was 85 and that you were supposed to be on oxygen--trust me, with o2 sats of 85--that can be causing a whole LOT of your problems, seriously.

The phone vibrating feeling--I get that quite often--and have actually reached in my pocket for the phone--only to realize it's my body, not the phone.

Sensory issues just shouldn't be ALS.

I wouldn't try to "hurry the doc" up or harass him to test sooner. Let them repeat the abnormal blood tests--again, something that makes ALS more unlikely--and don't ask for an EMG--let them suggest it if they think it's necessary.

I don't think I'd do much of any testing personally until you have oxygen levels that are normal--at least not testing they say you need to have. Hope you find some answers.

 

[jc10]

thank you for your replies. i don't recall ever posting here before. ? but maybe my mind is going too. i just signed up when i posted last. i would love see what i posted and if that really was me..? how would i find that post? as i said above i just registered recently so it would have been under a different user name i did post a year ago but i don't remember doing that.

my o2 is fne. i have had trouble with having chronic bronchitis and asthma so when i do catch a cold, it gets pretty junky in my lungs and have been to er a couple of times because of it.