MVV at 50% and hoarse voice going on for months - doctors don’t know what’s going on

Hello all,

I'm a 34 year old female. Non smoker. No previous conditions except cervical hernias (discovered in January) that I’m treating with physiotherapy.

I had a car accident in March breaking my ribs and stayed home for a month in recovery.

I had Covid in April-May with mild symptoms, some of them still going on.

Soon after testing negative again, I started noticing my voice was low, raspy and strained. Nobody else seemed to notice at the time. It got worse over the last few weeks and now I feel like I have a weight in my chest and globus feeling in throat. People start noticing my hoarse voice. I have fatigue in speaking. I had a spirometry and the values are ok except MVV, at 50% of its value. That’s when I started worrying because until then I thought that I had long-Covid symptoms but my pulmonologist made very clear that this is a neuromuscular symptom. I am very concerned because I have ALS in my family, with both my grandmother and my father who passed away because of it. I don’t have genetic testing available. My GP says MVV might be Covid related and not it worry about it, while my ENT doctor says it’s absolutely not COVID related and advises to see a neurologist. Although he was confused because my vocal cords looked ok during the laringoscopy. I had antivirals, Gerd medicines, etc. tried pretty much everything. Blood tests are all fine. Oxygen levels at rest are back to normal at 97-99% (they were low during covid).

I am so worried about ALS, but I had 3 neurological visits BEFORE Covid and they were all ok. Reflexes, etc. I don’t have swallowing issues. I can eat and drink normally.

I really don’t know what to do. I have trouble in my everyday life I can’t speak very clearly or work and I got really depressed. I feel like my life can’t go on this way and I see no improvements. Nobody understands what’s going on. Any advice will be appreciated.

I understand it’s a complex situation and im not trying to get a diagnosis online. But I have been trying and trying to get a response from a doctor in person, from November to today I have been to countless doctors, GPS, rheumatologist, pulmonologists, ENT docs, went to ER twice, 2 blood tests, etc. I spent thousands of € for private visits - and in my country public healthcare is free so you can imagine the effort I’ve been putting into undestanding what’s going on!

I have been dismissed a lot in the beginning with ”its anxiety” and stuff like that, but I don’t get that anymore. Every doctor I talk to seems to acknowledge that there is something going on but nobody understands the bigger picture. I’ve been bouncing back and forth from one doc to another but none of them looks like they’re even trying. Meanwhile my quality of life is horrible. Besides the breathing and voice problems, I have fatigue doing everything and a lot of shaking. I also go to a psychologist. But I really want to address the organic problems. What I’m looking for is advice on what to do next. Where to go. Thanks for reading.

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