Hoarse Voice and reduced MVV (50%)

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SulleyAnneC

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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.
 

Nikki J

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Mvv is very nonspecific and you said everything else was normal. If it were respiratory compromise due to ALS it should show more abnormalities. Covid even when the case was mild can wreak havoc on your body and long covid can continue to get worse so that is another ( more likely ) explanation. Your pulmonologist said to check with neuro so yes you should follow your doctor’s advice. Let us know after you see the neurologist and have whatever tests they order what the outcome is. Do not confine your questions to the neuro to ALS. Ask what is wrong and let them work with an open mind
 

SulleyAnneC

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Thank you. I will do that.
So MVV is not only neuromuscular? I have a hard time understanding the meaning of this value. Checking Dr. Google is not helpful in this case
 

lgelb

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Maximum Voluntary Ventilation (MVV) is actually used more often in identifying potential lung problems than nerve problems. It is not specific to your lung capacity or air exchange, but rather to the process of breathing.

As Nikki says, in ALS we would see many more abnormalities if you had this one. If the other measures were good, it could relate to the hoarseness in terms of a deficit in the mechanics of your voice and breathing -- how well muscles and passageways are working together -- as can occur after Covid. Kind of like rusty hinges. Having some sessions each day where you take deep, long breaths through your nose and blow out hard through your mouth may help.

Of course, any new physical lump should be examined by a doctor.

Best,
Laurie
 

affected

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Truly long covid is a terrible thing and they are still discovering how many impacts it will have on you over a period of time they are still working out.
Everything you describe fits with long covid and the cervical hernia.
A hoarse voice is truly not an indication of ALS.
You need to stop trying to become a doctor by using google and return to discuss your concerns with an actual doctor who can examine you and order tests, that is the only way to truly find out if there is anything more going on, or to receive help addressing your symptoms.
I'm really sorry that you have long covid, I have a few friends going through this and it is beyond awful.
 

SulleyAnneC

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Thank you all so much for your replies. What is concerning to me - what I don’t understand - is that the pulmonologist made it very clear that my MVV result is not COVID related but it’s strictly muscular or neuromuscular. (I had to ask him again via email because I was not sure I understood during the visit).
Now when I add that to the other symptoms I had for months and the positive EMG result (not to mention my family history) it makes me worry.
Also I don’t undestand why is “hoarse” voice not an ALS symptom?
By hoarse I mean it sounds low, raspy and strained. It has been going on for many weeks now. I do not have a cold.
Both the ENT doctor and the pulmonologist don’t offer an explanation for that. No infection, vocal cords look healthy… I really do not see any other explanation but neurological.
Thanks for reading, once again
 
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Nikki J

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When is your neuro visit? I don’t think there is anything more we can say before you have results from your exam and any tests that are ordered.
 

SulleyAnneC

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Thanks. Not until mid September, unless I can find another doctor available. I updated the neuro doctor (the one who visited me in November) via email with my spirometry results and the new symptoms. He said my position definitely needs to be updated with a new physical examination. Will try and update this thread
 

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Let us know after the mid Sept visit, that's not too long to wait now. You can take control of how you move through this month, remember no matter what diagnosis you get, you won't get this month back so use it the best way.
 
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