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MVV at 50% and hoarse voice going on for months - familial ALS

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AnneC-sun
AnneC-sun

(I posted the same question in "general health" before as I could not find this community. I hope it's not a problem.)

Hello all,

I'm a 34 year old female. Non smoker.

No previous conditions except cervical hernias (discovered with a MRI 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. Should be 100% at my age. 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.

Grandma ha FTD and dad spinal ALS. I also have a cousin in the process of diagnosis. I don’t have genetic testing available for now, unfortunately.

My GP says the MVV value 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 tried antivirals, Gerd medicines, etc., 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 don’t have swallowing issues. I can eat and drink normally.

I am so worried about bulbar ALS, but I had 3 neurological visits BEFORE Covid and they were all ok. Reflexes, etc. The last neuro visit was 8 months ago and i'm in denial and unsure should I go to another or not.

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.

**

ALSO** 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. Should I gather courage and go to see a neuro again.

Thanks for reading.

1 like, 1 reply

1 Reply

  • Zohan
    Zohan AnneC-sun

    Edited

    Hello Anne,

    I read your problem description and while I am no doctor or specialist I would like to give you some hints or just write few warm words.

    First of all I would summarize your case if I got it correctly:

    • you have or had ALS occurrence in your family
    • you were quite OK but one day you had car accident (broken ribs)
    • soon after that accident you also had COVID with mild progression
    • after recovering from COVID you experience non-trivial health issues which you describe here - namely: voice changes, talking problem/discomfort,
    • other related issues are fatigue, depression, anxiety, not receiving explanations from doctors

    First I should write you that this quite rare description (due to rare ALS component!) reminds a bit my own health issues which I had some time ago - but with couple differences.

    I would ask if you were examined from endocrinology point (mainly the thyroid condition) and also if your blood pressure is normal or heightened (including your known history on this).

    With the blood pressure it could be higher now due to result of the unpleasant situation/feelings but there can be also other factors so your knowledge on historical values would help.

    In my case the doctors were also not helpful at all but at least I got one small trace - weaker thyroid, not necessarilly clearly stated hypothyroidism but the number was already out of norm.

    In my case I also had higher blood pressure despite having no obvious physical reason (practically normal or perfect weight etc.).

    Second important thing is to get your fear under control which indeed is not easy thing to do but you just need to attempt for it and then also get busy with the other steps I will further describe here.

    I have big understanding for your state because I had ALS in family too and who saw this disease so closely cannot forget it - this can be great source of trauma, because one can see how certain symptoms could theoretically evolve - it is just terrible. In my case it was not problem with voice but neurologic discomfort.

    In no way I want to state this ALS fear is source of the problem. There is something else for sure, but this fear has negative impact even on physical level - as any source of stress (it inhibits immunity).

    You may have some reactivated infection - this phenomenon is known but complex. What could trigger that in your case is actually that car accident - it works in the same way as above stress. It can rapidly influence your immunity due to the shock, stress hormons inhibiting immunity, pain etc. and that can reactivate some latent infection in your organism, which was under control of normally working immunity before. In my case no blood work (repeated) revealed any infection but there was something for sure. What can we do? Blood tests are far from perfect. Having COVID is another work for immunity so while you made that (congrats) that other problem could be spreading more in the background.

    What helped me?

    I actually tried to find help anywhere and based on reading through many sources, including those which the doctors or even other people would immediately criticize (pseudoscience labels etc.), and then tried in my opinion rational treatment which I assessed as non-harmful and worth trying. I have just checked the books again - and yes, one is also mentioning "voice changes (rough)" as a symptom of potential viral infection. The steps I followed were below:

    1. I tried to regulate all sources of stress - I was formally "healthy" so I should continue to work etc. but I knew I am not healthy. If you can get days off etc. make changes in family so you can relax more I would do that.
    2. I focused on healthy diet and very rapidly - perhaps it is not necessary to be such an extremist but my motto was that the strangely ill organism needs to get only the best input (I can give more details, lot of fruits, no dairy, sign. reduced meat etc.).
    3. Resting and quality long sleep is necessary - one cannot expect that continuing in all the "business as usual" stuff will help ... the organism needs time to fight the problems.
    4. I tried several other food supplements - all immunity supporting, today everyone talks about zinc etc. due to COVID. Herbal teas, some home made like ginger and few more like vilcacora, licorice, lemon balm etc.
    5. This new regime I ran for several weeks ... and today many things actually remained in my improved life style (lesson learned for me).

    Up to now it can seem like some bullsh*t but after some time (in weeks) I noticed something is happening - thyroid swelled up temporarily and there were other signs something changed in the organism, or was restored. Like if the body got additional power so it started solving the problems. Well it can sound weird but it happened in my case and after some time and through few up&down cycles I got rid off all the health issues.

    I am not sure how it can sound to you now, but I can give you some further tips (books, articles) as my answer is getting too long.

    I am hoping you will get better soon, there is no reason why you should not. I learned there is no magic solution to these problems, like some pill or drops. It is all about supporting your organism, giving it extra care, sleep, turn on the optimistic mode despite that terrible experience with disease like ALS etc. and it will do the job for you. GOOD LUCK.

    P.S. Im sorry if my response is a bit chaotic, I am not native english speaker.

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