dfamlone
New member
- Joined
- Jan 26, 2022
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello, I am 38 year old male that has been having some scary symptoms and wanted to get some opinions.
Symptoms
It started a little before thanksgiving I noticed my hands were swelling and hurting. Particularly the right hand. On 11/28 my right index finger started to twitch, and I noticed my left arm was getting fatigued really fast, this was followed by my left eye starting to twitch really heavy. This was also accompanied with having to pee a lot.
As of today my right leg feels wobbly at times, I have loud crunching in both knees, tremor in both thumbs, pain in the finger joints, was having numbing in the left pinky which went away. The left eye does not twitch often but the right eye twitches almost constantly and it’s a very subtle twitch and it’s almost activated when I touch it which really scares me. I have this weird tightening on the chin that happens mostly in the morning but seems to wear off by night. I started having trouble swallowing not food or water just in general. It feels like a lump in my throat along with a crunching sound. It’s not with every swallow.
I also have twitching in my calves (more like crawling), buttocks, neck and arms. My vision has also been weird it will go blurry but then get back normal throughout the day. I’m having trouble going to the bathroom. I get random pains in my arms legs but it will go away. In particular my left foot will wake me up with a shooting pain that feels like cramps but it’s painful.
At night when I turn over my arm (it’s usually the right arm) with start to feel like it shaking or vibrating and sometimes my body will feel like a internal vibration. My tongue has started to twitch when I look at it along with my face will twitch when I smile or scrunch my face in any manner and when I open my mouth my lips will twitch. Lastly is the tremor in now both my thumbs and both my pinky finger.
Doctor Visits.
So I have seen my pcp and a neurologist and so far no one has flat out told me it’s not ALS and I am worried sick about it and it disrupting my life to a horrible extent.
Testing So Far;
So far I have
Chest X-rays. All normal
Blood work: all normal except Anit Histone but I don’t take any drugs for drug induced lupus, Epstien Barr IGG (which show I had it as the igm is normal) greater then 600, Lyme Antibodies but that was a false negative as western block came back normal, Rocky Mountain Spotted Fever IGM came in really high but has not been confirmed with IGG which is pending as I type.
MRI of head and neck all normal except mild disk degenerate in two locations but no pinched nerves. They are sending me back for another one because this was not done with contrast
Because of the swallowing issue a Ultrasound of the neck was done a nodule was found which they suspect is a reactive lymph node as the second ultrasound shows it went down in size
EMG ( see attached) which the legs were normal and the arms showed I have carpal tunnel syndrome in both wrist
My doctor also order some additional blood work.
My worries:
My symptoms are very concerning and all that I have read is that ALS could be causing this and that I have an onset of bulbar. Is this anything anybody can give some insight to? Was the EMG possibly done to early? I will note I had them done a week apart with all these symptoms present. Can CTS be a flag for ALS? Also there are two lines in the report that talk about latency is that worriessome in regards to ALS? And as far as the two most concerning symptoms the lump in throat and crunching sound (note: i do suffer with GERD for over 10 years jut had a endoscopy in October 21 all was fine never had this happen before and i am high does of Prilosec) and the constant right eye twitching, is something that show I may have ALS?
Conclusion;
The scary part is all these symptoms progressed really fast and have not really Gone away. The action tremor bother me as I work with my hands and on the computer. We had snow the other day and I went to shovel the driveway to test myself I was able to shovel the driveway but was sore for the next two to be expected and my wife said ALS does not present in the pattern it’s presenting but I can’t help but worry about and I am truly terrified. Also a thought but it hasn’t been proven because my Epstein-Barr was so high and I believe I got it from my wife as she stated she had mono and was diagnosed with MS last year, I was wondering could all this be MS related as studies show Epstein-Barr has a direct connection to MS, but my MRI were normal but again are being repeated two weeks from now.
Symptoms
It started a little before thanksgiving I noticed my hands were swelling and hurting. Particularly the right hand. On 11/28 my right index finger started to twitch, and I noticed my left arm was getting fatigued really fast, this was followed by my left eye starting to twitch really heavy. This was also accompanied with having to pee a lot.
As of today my right leg feels wobbly at times, I have loud crunching in both knees, tremor in both thumbs, pain in the finger joints, was having numbing in the left pinky which went away. The left eye does not twitch often but the right eye twitches almost constantly and it’s a very subtle twitch and it’s almost activated when I touch it which really scares me. I have this weird tightening on the chin that happens mostly in the morning but seems to wear off by night. I started having trouble swallowing not food or water just in general. It feels like a lump in my throat along with a crunching sound. It’s not with every swallow.
I also have twitching in my calves (more like crawling), buttocks, neck and arms. My vision has also been weird it will go blurry but then get back normal throughout the day. I’m having trouble going to the bathroom. I get random pains in my arms legs but it will go away. In particular my left foot will wake me up with a shooting pain that feels like cramps but it’s painful.
At night when I turn over my arm (it’s usually the right arm) with start to feel like it shaking or vibrating and sometimes my body will feel like a internal vibration. My tongue has started to twitch when I look at it along with my face will twitch when I smile or scrunch my face in any manner and when I open my mouth my lips will twitch. Lastly is the tremor in now both my thumbs and both my pinky finger.
Doctor Visits.
So I have seen my pcp and a neurologist and so far no one has flat out told me it’s not ALS and I am worried sick about it and it disrupting my life to a horrible extent.
Testing So Far;
So far I have
Chest X-rays. All normal
Blood work: all normal except Anit Histone but I don’t take any drugs for drug induced lupus, Epstien Barr IGG (which show I had it as the igm is normal) greater then 600, Lyme Antibodies but that was a false negative as western block came back normal, Rocky Mountain Spotted Fever IGM came in really high but has not been confirmed with IGG which is pending as I type.
MRI of head and neck all normal except mild disk degenerate in two locations but no pinched nerves. They are sending me back for another one because this was not done with contrast
Because of the swallowing issue a Ultrasound of the neck was done a nodule was found which they suspect is a reactive lymph node as the second ultrasound shows it went down in size
EMG ( see attached) which the legs were normal and the arms showed I have carpal tunnel syndrome in both wrist
My doctor also order some additional blood work.
My worries:
My symptoms are very concerning and all that I have read is that ALS could be causing this and that I have an onset of bulbar. Is this anything anybody can give some insight to? Was the EMG possibly done to early? I will note I had them done a week apart with all these symptoms present. Can CTS be a flag for ALS? Also there are two lines in the report that talk about latency is that worriessome in regards to ALS? And as far as the two most concerning symptoms the lump in throat and crunching sound (note: i do suffer with GERD for over 10 years jut had a endoscopy in October 21 all was fine never had this happen before and i am high does of Prilosec) and the constant right eye twitching, is something that show I may have ALS?
Conclusion;
The scary part is all these symptoms progressed really fast and have not really Gone away. The action tremor bother me as I work with my hands and on the computer. We had snow the other day and I went to shovel the driveway to test myself I was able to shovel the driveway but was sore for the next two to be expected and my wife said ALS does not present in the pattern it’s presenting but I can’t help but worry about and I am truly terrified. Also a thought but it hasn’t been proven because my Epstein-Barr was so high and I believe I got it from my wife as she stated she had mono and was diagnosed with MS last year, I was wondering could all this be MS related as studies show Epstein-Barr has a direct connection to MS, but my MRI were normal but again are being repeated two weeks from now.