Running out of hope

Posted by tiredandalone @tiredandalone, May 18, 2022

I am a 43 year old female who thought i was pretty healthy. I woke up 11 weeks ago and had no voice and I still have no voice. I was also experiencing night sweats, lump in the throat, profuse sweating through out the day (to the point it runs down my arm), knot in stomach after i eat (like looks like I am pregnant), loss of appetite, weight loss, shortness of breath, and extreme fatigue and recurrent sinus infections, colds, runny nose, etc. I did have covid in 2019 and had the respiratory issues. I still have all the symptoms and am frankly getting wore out just going through all this. I have been scoped in the nose to check the throat, ct of the chest, abdomen and pelvis. They have found 2 spots in my lungs and I go see pulmonologists in June to check those out. Nothing has been found anywhere. Bloodwork is all at acceptable levels. ENT did put me on another medication for silent reflux, and I have been taking it for several weeks now and still have all the b symptoms. any suggestions, personal experiences, etc would be greatly appreciated. It is getting to the point, that I am wanting to loose all hope. I have this gut feeling that there is something that is being missed. I feel unheard and am getting frustrated. I have felt little "knots" in my neck, but no one seems to bat an eye. I know that how I am feeling is not normal by any means for my body. I do take meds for heart palpitations, GERD, anxiety. I was also told at one point, that there was too much protein in my blood. I have also been test4ed for multiple myleoma, and have had my thyroid checked as well. I have done so many tests that I feel like an experiement.

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moylandavis | @moylandavis | Aug 3, 2022

Have you looked into mast cell activation syndrome? It is becoming more common with Covid long haulers…this guide may help eliminate or confirm…written by the top MCAS doctors in the USA.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf

Although it is a primer for gastroenterologist, my immunologist used it as a guide to get me tested and then treated…I’m soooo much better now…

SusanEllen66 | @SusanEllen66 | Aug 3, 2022

Vasculitis.
About 15 different forms of Vasculitis exist. Most doctors do not know about most of them, and it sometimes takes many, many tests and much frustration until someone finally puts the pieces together! It’s an auto-immune condition.

The diseases of Vasculitis are treated by a rheumatologist.

I currently have 2 forms. All my blood work is perfectly normal! Yet it damaged my large nerves causing peripheral neuropathy. The inflammation doesn’t show up in a lot of Vasculitis patients.

Please make yourself familiar with Vasculitis. There is a Vasculitis Foundation you can access online.
I’m sorry you are going through all this. I understand…

ralphysmom | @ralphysmom | Aug 3, 2022

tiredandalone..... what about pericarditis, endocardititis, blood cultures.

jojo58 | @jojo58 | Aug 28, 2022

Did you have your thyroid checked by a endocrinologist? Most other doctors don’t know what all they should be testing for. This could account for some of your symptoms. I’ve started losing my voice when I’ve been in pain too long and I’m overtired. But it does come back. Have you had any X-ray or MRI on your cervical spine (neck)? Anything wrong there could be a cause. I have a disc bulging at C3 and severe stenosis and cervical spine is compressed. These things also could be contributing to your problems. But you said you’ve had all the tests. I would make sure you had X-ray and MRI on your cervical spine

mooshymom | @mooshymom | Sep 2, 2022

Find out from possibly a new doctor what is going on with your body!

donnajm | @donnajm | Sep 2, 2022

Have more tests for autoimmune disorders. I started having lung problems and it ended up being MPA anca vasculitis.

jjwest | @jjwest | Sep 3, 2022

I have heart and spine problems, 'have finally found Dr's that listen and care.
Don't ever give up, there are good Dr's out there.
PEACE & LOVE...JJ

pml | @pml | Sep 11, 2022

Hi,
I'm so sorry that you are going through all of this! How terrible for you! Have you considered looking up the side effects of all the medications you are taking? You can do this on the Mayo Clinic website. That way, you can discuss any side effects that you find may be causing you problems with your doctor. Don't stop taking any medications just because you may find they could be causing a problem without talking to your doctor(s) first. Also, I have lost my voice several times in the past and have found Listerine, (the original flavor) helps bring it back. So does hot salt water.
Prayer does work and you don't need a voice to pray! Just say your prayer in your head. God will hear it. I pray and just talk to God like he's my best friend; and he is. I often find myself telling him to please hurry up when answers aren't as forthcoming as I like. I'll remember you in my prayers.
PML

carolc66 | @carolc66 | Sep 12, 2022

I pray all the time now. Knowing that there is a God who listens and responds to my prayer when no one else does is such a comfort.
Even if you don't believe, try it. Open up your heart and you just might be amazed at what the results are.

siackma | @siackma | Sep 15, 2022

I was going through what you are for years, and still am. What a doctor finally found about 4 months ago after years of doctors testing and calling it my imagination Etc, was that I have a pituitary tumor. An endocrinologist can do a Dye Contrast MRI and find if it is truly there. Good luck. Don't give up hope yet.