SulleyAnneC
Member
- Joined
- May 19, 2021
- Messages
- 14
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- IT
- State
- IT
- City
- Milan
Hi all, I wrote a post a while ago describing my issues that started last November. To summarize I had fatigue, low raspy voice and pain in the limbs ad well as clinical weakness in the left arm.
I had and still have cramps every night, particularly on the legs.
The weakness in my left arm was soon justified by a finding in the MRI (cervical hernia, that I am treating with phisiotherapy).
I wanted to update as soon as I got answers (as we said, even if it is not ALS it might be useful for a reader who's in a similar situation.) but the post is not open for further replies. I hope I don’t go against rules in opening another.
April/may I got COVID, mild case with few symptoms, but soon after testing negative again my voice went full hoarse to a point that everybody notices it and family members ask me if I’m sick. I didn’t worry thinking it was a covid-related thing, but now it’s been months and it's getting progressively worse with fatigue in speaking.
I have a lot of pain and cramping and shortness of breath to the point the my GP “diagnosed” me with LONG-COVID.
Blood test are fine. I take supplements, drink lots of water, rest. Went to ENT doctor to find out about the voice, he performed a laryngoscopy and nothing was found there. Vocal cords are also fine he says. He told me to try and visit a pulmonologist and so I did. I had a spirometry, all parameters are ok except for MVV, drastically reduced to 50% of its normal value. I asked the doctor if this might be related to neuromuscular problems and he said yes but “not necessarily” but also to go see a neurologist soon. (Side note, i tried the test 3 times and 50% was the maximum I got.).
It’s also been a month since I started feeling a lump (physical lump, it moves when I lay down) in my throat, which I unfortunately did not feel yet when i had the ENT visit.
I said before my dad had ALS and my grandma had FT Dementia (probably, long story).
Another member of my family (not a close relative but a relative of my dad) is in the process of diagnosis right now. I know genetics don’t diagnose me, but it adds up to my fears A LOT. I also do understand that i have concern in too many areas (limbs, voice) but still can’t figure out what else could possibly be.
Anxiety worsen things, but it is not the cause. I listen to my body and i know there’s something wrong, I just don’t feel like doctors are listening.
I really don't know what to do, should I see a neurologist again? My negative neuro exam was in november. Is it too soon?
I am sorry for the long post.
I wanted to update as soon as I got answers (as we said, even if it is not ALS it might be useful for a reader who's in a similar situation.) but the post is not open for further replies. I hope I don’t go against rules in opening another.
April/may I got COVID, mild case with few symptoms, but soon after testing negative again my voice went full hoarse to a point that everybody notices it and family members ask me if I’m sick. I didn’t worry thinking it was a covid-related thing, but now it’s been months and it's getting progressively worse with fatigue in speaking.
I have a lot of pain and cramping and shortness of breath to the point the my GP “diagnosed” me with LONG-COVID.
Blood test are fine. I take supplements, drink lots of water, rest. Went to ENT doctor to find out about the voice, he performed a laryngoscopy and nothing was found there. Vocal cords are also fine he says. He told me to try and visit a pulmonologist and so I did. I had a spirometry, all parameters are ok except for MVV, drastically reduced to 50% of its normal value. I asked the doctor if this might be related to neuromuscular problems and he said yes but “not necessarily” but also to go see a neurologist soon. (Side note, i tried the test 3 times and 50% was the maximum I got.).
It’s also been a month since I started feeling a lump (physical lump, it moves when I lay down) in my throat, which I unfortunately did not feel yet when i had the ENT visit.
I said before my dad had ALS and my grandma had FT Dementia (probably, long story).
Another member of my family (not a close relative but a relative of my dad) is in the process of diagnosis right now. I know genetics don’t diagnose me, but it adds up to my fears A LOT. I also do understand that i have concern in too many areas (limbs, voice) but still can’t figure out what else could possibly be.
Anxiety worsen things, but it is not the cause. I listen to my body and i know there’s something wrong, I just don’t feel like doctors are listening.
I really don't know what to do, should I see a neurologist again? My negative neuro exam was in november. Is it too soon?
I am sorry for the long post.