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Vangie

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Jan 5, 2018
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Learn about ALS
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US
State
IN
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Wabash
I am a 41 year old mom of two. I was diagnosed at age 27 with chronic myeloid leukemia and put on oral chemo which I continue to this day, everyday.

I was in pretty good health until an episode of shingles three years ago. Afterwards it felt like I couldn’t deep breathe and had chest pain. Shortly after that muscle twitches and a pins and needle feeling started in my feet and ankles, causing a bit of atrophy left side first. The twitches went everywhere after that and I had nerve pain in my face and temples. My tongue quivers but only on the sides.

After many test on every part of my body, I was sent to a neurologist and my exam was negative. She did a lower extremity EMG and NCS and said it showed mild neuropathy otherwise negative. I was sent to IU Medical Adult Neurology and was given another neuro exam , negative as well. He did an upper and lower EMG and NCS and said both negative. Did show mild neuropathy in my feet and bilateral carpal tunnel. My sensory nerves were a little “ slow” but he is not worried and “ This is not an ALS issue”

I recently saw a GI specialist and the EGD showed esophageal spasms “ more than we normally see” but all they did was put me on meds to try and calm the nerves down. I do slur my words but it is on and off, no one has asked me if I am drunk. It is almost as if my brain is thinking of two words and they come out together.

My biggest concern is although most of the muscle twitches have decreased or gone away, they still pop up randomly. I have a red irritation in my mouth and my tongue is bigger than normal, I am constantly biting it and my esophageal twitches are scary. Should Zi ask for a study done on my mouth or should I just move on and take their word that is neuropathy combined with nerve damage from the shingles? Thank you!
 
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Please move on and take their word for it, they are really smart and know what to look for.
 
Chemo can cause lifelong neuropathy. I'd speak to a doctor about looking further into getting some help with this.
 
You have 2 clean EMGs. Run with it!
 
Thank you for taking the time to respond. Will do and many blessings to you��
 
Thank you very much! I appreciate you responding so quickly. ��
 
I hope this is not bothersome but I do have two questions: 1. My EMG and NCS showed mild neuropathy in my feet. I have noticed some thinning of my toes but my question is before or while muscles are going through atrophy, does your skin react in any way? I have had a bumpy red itchy rash on hands and feet and no one can get it to go away? #2 is does Bulbar ALS cause your tongue to swell? Mine is big and quivers on the sides but also my uvula is long skinny and lays on my tongue now, also has a quiver to it? I do have esophageal spasms and they say this is due to shingles damaging nerves. Does any of these things sound familiar? Thank you!
 
If you have an active shingles infection, antiviral therapy is available. If the rash persists, you might see a dermatologist who can treat or refer you from there.

Since you don't seem to have a neurological reason for any significant atrophy, we can't really comment on any sequence of events. The diagnosis comes first.
 
Thank you so much. Definitely not an active shingles attack but I just wasn’t sure if skin reacts to a muscle that is going through atrophy. I had read where a young lady said her tongue had been her first symptom so it scared me a but. Wasn’t sure if I should ask for a study on my face or if this a misunderstanding as a symptom. Thank you so much for your time and advice��
 
Thanks to all who have taken the time to respond. I have two little ones and I am so scared to leave them, so scared I am risking possibly upsetting you all which is certainly not my intention. I have had the esophageal spasms for three years now and I have had a tongue that over the last year has doubled in size and quivers on the sides. If I can get the tongue away from the uvula, the uvula twitches. All I need to know is if these things can be contributed to ALS? Is the timing to long? If anyone can answer I promise to not bother you again. I thank you from the heart.
 
You have had 2 clean EMGs. Be grateful for that. You've had your questions answered and your symptoms have been ongoing for years. You'll have to search another diagnosis as ALS is not presenting here.

Again, your questions have already been answered. Please keep your promise.

Take care and good luck.
 
Re: please forgive me but I do have a question

I have attached a few photos. My neurologist appointment is at the end of February. With my leukemia on top of wondering wondering Wonder if this is atrophy. I know they said my EMG and Nerve study showed bilateral carpal tunnel and mild neuropathy but my left foot feels like is lead, does not bend when I walk and my skin underneath is red and scaly on both areas of trouble, my hands and ankles/feet. My hand hurts and aches lol je arthritis, mostly on the left side which is my worst foot as well. They pins and needles are still present in feet, occasionally in fingers. Mostly cramps feeling. My other biggest worry is my irregular, out of the blue, muscle movements. My left shoulder is really sore as well as the forearm and sporadically moves forward. I have these muscle jumps a ton as I try to fall asleep and again while trying to wake up. Every morning my left shoulder spasms and my left hand closes tightly then it’s done?? Am I just way off base here, stressing for nothing or are these signs of als? I know I have two EMG test that were normal but they were almost a year ago and these symptoms were not as pronounced as they are now? Please do not be upset with me, I just need a bit of guidance. Thank you.
 

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Also the back of my neck is super sore, mostly on the left side.
 
Vangie.
Please stop.
You have heard the answers already.
If you don't believe what some of the most helpful here have to say, go ask your doctor.
Angie
 
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