healthproblems1
New member
- Joined
- Nov 16, 2022
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hi! At this point I am not sure where to turn apart from this community. I just turned 25 last month and am a female. Since July I have been having some very concerning symptoms. I have had 3 MRIs, hundreds of blood tests, an EEG, a lumbar puncture, and as of Monday, an EMG.
The only things showing anything are a relatively high platelet count, a high c reactive protein, and an EEG that showed slowing on one side. I have been having constant severe and violent muscle spasms and twitching since July that gets worse at rest. I have also had severe muscle cramping, and many tongue and mouth problems. The mouth and tongue problems are no longer as bad, but for two months my tongue felt swollen on and off like there was something stuck under it or like it was sticking out and I had to constantly suck on ice and cough drops or else it was unbearable. I would also have tingling feelings on my tongue, a feeling of roughness inside the cheeks of my mouth, and bumpy feelings on the roof of my mouth. For a few weeks now I've had feelings of heaviness above and below my eyes that has spread further down and seems to get worse. I have also had some weakness in one of my hands.
My emg was normal but I have heard that bulbar onset ALS can cause normal EMGs. Additionally, early on in my symptoms I had severe arm weakness that went away. I also could not move the lower half of my face to smile or chew for about three days but that went away. I had a period of two weeks as well where I could barely breathe but that disappeared too. My voice is very nasal and has been for the past two weeks. I also lost about 30 pounds in the first two months of symptoms. I'm at a loss as to what I should do and I am extremely concerned about it being ALS as mostly everything else possible has been ruled out. My neurologist told me I definitely do not have ALS after the EMG and w physical exam but does not specialize in neuromuscular so I feel I should get a second opinion. Any advice would be GREATLY appreciated. Thank you so much.
The only things showing anything are a relatively high platelet count, a high c reactive protein, and an EEG that showed slowing on one side. I have been having constant severe and violent muscle spasms and twitching since July that gets worse at rest. I have also had severe muscle cramping, and many tongue and mouth problems. The mouth and tongue problems are no longer as bad, but for two months my tongue felt swollen on and off like there was something stuck under it or like it was sticking out and I had to constantly suck on ice and cough drops or else it was unbearable. I would also have tingling feelings on my tongue, a feeling of roughness inside the cheeks of my mouth, and bumpy feelings on the roof of my mouth. For a few weeks now I've had feelings of heaviness above and below my eyes that has spread further down and seems to get worse. I have also had some weakness in one of my hands.
My emg was normal but I have heard that bulbar onset ALS can cause normal EMGs. Additionally, early on in my symptoms I had severe arm weakness that went away. I also could not move the lower half of my face to smile or chew for about three days but that went away. I had a period of two weeks as well where I could barely breathe but that disappeared too. My voice is very nasal and has been for the past two weeks. I also lost about 30 pounds in the first two months of symptoms. I'm at a loss as to what I should do and I am extremely concerned about it being ALS as mostly everything else possible has been ruled out. My neurologist told me I definitely do not have ALS after the EMG and w physical exam but does not specialize in neuromuscular so I feel I should get a second opinion. Any advice would be GREATLY appreciated. Thank you so much.
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