should I push for an emg

[Zbiz123]

Hi all: I've read the stickies but am really hoping for feedback if I should push for an emg. My symptoms began several weeks ago with leg cramps all the time. These cramps then went away. However, I now find that it hurts to bend down for a long length of time. I also find it hurts to squat for a long period of time when I previously could do so for a long time. Additionally, I also have begun to have cramps in my shoulders. For instance, it hurts when I carry heavy items with my right hand. In terms of tworching, I have some tingling/twitching in both feet. At the same time, I've had a huge increase in salivia especially when I wake up or after eating and drinking. I also cough sometimes after I drink/eat and feel like I'm spitting when talking. I have been to the Drs who did blood work and Ck test and all was normal. Does any of this sound like the initial stages of als and should I push hard for an emg.? Thanks for the input!

 

[affected]

I cannot see how you can post this after reading the sticky posts.

You have zero ALS symptoms. Let those who really need an EMG get a go at it.

Please also consider using paragraphs as the sticky also asks so that we can read your text. Well you don't need to be here and post so that may be moot.

All the best, work with your doctors as you have something they can certainly fix.

 

[Jhettinger]

A little new here, but let me dive in. I have had ALS for about 2 years. Finally diagnosed when my voice started to change when I drank a beer. I would push for an EMG, there was no line when I got there. I have had 3 now and they help establish a baseline. If your insurance pays, get every test known to man to counter the ALS diagnosis, until you know for sure. I started with tremendous leg cramps and muscle twisting/hard as a rock spasms about 2 years ago. My MRIs were all clear. I just noticed something that my Dr said was no big deal. But it was a big deal. I am taking the Deanna Protocal supplements and everything my Neurologist prescribes. I notice a big difference if I miss my meds for an hour.

 

[Zbiz123]

Thank you both for your responses. Leg cramps seem to be a common trend of initial als. I'm also very concerned that I have all this salivia and that I feel different. The stickies aren't really clear on crampsans im freaked out about bulbar with the salivia.

 

[Atsugi]

Zbiz, your post says "this can't be ALS." The facts in your posts point AWAY from ALS. Let your doctors decide how to investigate your problems.

Jhettinger, please help me understand your post. You described tight painful muscles. You said your doctor said no big deal, but you also say you were diagnosed with ALS in April. You said you've had it for two years. Were you diagnosed by a neurologist who specializes in ALS? What is your condition now? Any flaccid limbs?

 

[WendyWooG]

Zbiz
The problem with thinking that muscle cramping could be a symptom of ALS is that it could also be a symptom of lots of other problems none of them related to ALS. The stickies do go through everything for you, have a re read of them. If you feel you need reassurance ask your doctor about an EMG.
BUT and its a big but!,
be very wary of fixating on one particular diagnosis. Work with your doctor to investigate all options. If you just push yourself down one path you could delay getting a correct diagnosis.
I had a couple of other illnesses investigated and ruled out before getting my diagnosis, all of which had symptoms which could overlap mnd and all of which were treatable.
You do need to work with your doctor for a solution.
We are not doctors on here.
Best of luck.
Wendy

 

[Zbiz123]

Thank you for the replies. I just want to make sure I am following the right path. I have heard of many cases where doctors are wrong when it comes to als. Mike, do you mind if I ask you what points away from my symptoms being als. You seem very knowledgable from what I have read. Thanks!!!

 

[affected]

Everything points away from ALS in what you describe.

Please read the sticky post titled READ BEFORE POSTING.

If you have read it, read it again.

No matter what you read anywhere else, that is our official position and we won't argue against it or change from it because we know ALS really really well.

Good luck working with your doctors which is the best course to take now.

 

[Atsugi]

Let me explain what ALS is.

ALS is a disease in the brain that destroys those motor nerves which control the big voluntary muscles like your hands and feet. Once a nerve is destroyed, it cannot send the 'go' message to its corresponding muscle, so the muscle never gets the signal to contract. So the muscle just lays limp and useless and will not move anymore, forever. The ALS attacks the next nerve, and the next, in serial style, until all the body's voluntary muscles are flaccid. Notice that there is no pain, tingling, numbness, or "feeling of weakness" involved.

leg cramps all the time...went away >>> ALS doesn't go away.
hurts to bend down...hurts to squat >>> Nothing to do with ALS.
cramps in my shoulders...when I carry heavy items >>> Nope.
tingling/twitching in both feet >>> Nothing to do with ALS.
huge increase in salivia >>> Not familiar with that.
cough sometimes after I drink/eat >>> Nothing to do with ALS.

 

[Zbiz123]

Thank you. I appreciate the comments. I do have a follow have a follow up visit with my neurologist at Newton Wellesley. I'm especially concerned that I have lots of salivia after drinking and when I wake up in the morning paired with aches and pains. I know bulbar als I involves salivia problems. I think Pete Frates also has me nervous as his als came from aches and pains as symtpoms. I do appreciate the feedback and am hopeful
That my belief that I have als is not true.

 

[Nikki J]

No Pete had twitching followed very quickly by weakness manifested by significantly reduced performance on the ball field culminating in an injury I am taking that from a report in his own words.

Please use your energy to prepare for your follow up appointment so you can ask all your questions to your neuro. Who do you see?

 

[Zbiz123]

I see dr Richard toran. He actually just offered to see me today. He previously attributed my prior symptoms (headaches and blurred vision) to anxiety which turned out to be right after a brain Mri. Nikki from what I have read on here you seem incredibly knowledgable about als, based on my symptoms should I be nervous about als? Thanks again!

 

[Nikki J]

He is very knowledgeable and experienced. He offered to see you on SATURDAY?

In my opinion and experience I do not think it sounds like ALS. However, believe what Dr Toran tells you and follow his recommendations

 

[Zbiz123]

Yes, he saw me the first time on a Saturday as well.N the first time he indicated that a lot of my problems seem to come from my researching symtpoms on the Internet., it's good to hear your feedback on dr. Toran. I couldn't find many reviews of him. I'm greatly appreciative that he is seeing me today. I also appreciate your thoughts on my symtpoms as you, Tully, and mike seem to be incredibly knowledgable about ALS.

 

[Nikki J]

You are lucky indeed. Go with an open mind , present your symptoms, let him examine you and make his recommendations. If he has not already answered all your concerns then ask