Vangie
Member
- Joined
- Jan 5, 2018
- Messages
- 27
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IN
- City
- 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!
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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