Running out of hope

Posted by tiredandalone @tiredandalone, May 18 4:14pm

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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Good morning, @tiredandalone Your @name makes me feel very sad and concerned for you. Reading through your post today, my goodness, you’re really going through the ringer with all these unexplained symptoms! No wonder you’re frustrated and tired. But I do hope you’re not completely flying solo. Do you have friends, family, or pets that can offer some support or help bolster you when you’re feeling alone? Well, I’m happy you found Connect, you won’t be alone here. ☺️

Regarding your symptoms. You’ve been seen by a number of doctors and had quite a few tests run. What I noticed also was the recurring symptoms of illness which points to your immune system not being at its peak performance level.

You mentioned having Covid in 2019 and that you’re still experiencing most of those symptoms. Were you feeling perfectly healthy before having Covid? Have you ever heard of Covid Long haul? Some people who had the virus never feel as though they’ve recovered. The Connect forum has a group dedicated to the symptoms and any questions from members experiencing similar issues.

Here’s the link to the Group along with a excellent podcast on Longhaulers and one conversation you might find interesting as an introduction to the discussions in post covid group.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
https://connect.mayoclinic.org/comment/601628/
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/post-covid-19-syndrome-can-be-a-long-haul/
I’m not saying this is what’s going on but it’s another avenue to explore.
Has your doctor also checked for any other viruses such as CMV or Epstein-Barr?

Another item that raised my eyebrows a little is the elevated protein in your blood. Inflammation in the body can cause that but your doctor can have a lab test run to zero in on the type of protein. More specific tests can help determine the source such as liver or bone marrow.
Has your doctor further mentioned the protein in your blood?

REPLY
@loribmt

Good morning, @tiredandalone Your @name makes me feel very sad and concerned for you. Reading through your post today, my goodness, you’re really going through the ringer with all these unexplained symptoms! No wonder you’re frustrated and tired. But I do hope you’re not completely flying solo. Do you have friends, family, or pets that can offer some support or help bolster you when you’re feeling alone? Well, I’m happy you found Connect, you won’t be alone here. ☺️

Regarding your symptoms. You’ve been seen by a number of doctors and had quite a few tests run. What I noticed also was the recurring symptoms of illness which points to your immune system not being at its peak performance level.

You mentioned having Covid in 2019 and that you’re still experiencing most of those symptoms. Were you feeling perfectly healthy before having Covid? Have you ever heard of Covid Long haul? Some people who had the virus never feel as though they’ve recovered. The Connect forum has a group dedicated to the symptoms and any questions from members experiencing similar issues.

Here’s the link to the Group along with a excellent podcast on Longhaulers and one conversation you might find interesting as an introduction to the discussions in post covid group.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
https://connect.mayoclinic.org/comment/601628/
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/post-covid-19-syndrome-can-be-a-long-haul/
I’m not saying this is what’s going on but it’s another avenue to explore.
Has your doctor also checked for any other viruses such as CMV or Epstein-Barr?

Another item that raised my eyebrows a little is the elevated protein in your blood. Inflammation in the body can cause that but your doctor can have a lab test run to zero in on the type of protein. More specific tests can help determine the source such as liver or bone marrow.
Has your doctor further mentioned the protein in your blood?

Jump to this post

I too have had a few dozen persistent symptoms for over 2.5 years now, since November 2019 when both my husband and I became deathly ill with what we believe was Covid. I have been sick ever since with all types of strange neurological symptoms that are debilitating yet all tests are normal and most doctors shrug off my symptoms as just 'anxiety'. I finally just had a small nerve fiber biopsy yesterday at USF Tampa University and I found a doctor in Lakeland Florida, Dr Kathleen Haggerty from Watson Clinic who is specifically working on long hauler covid patients.
You might look into a skilled Long Hauler Covid doctor-clinic that could be of help in finding out what has happened to you. I know of so many people, like us, with all these multitude of weird symptoms who posts on the Mayo Clinic blog that are in our same situation.

I too am frustrated and feel so hopeless and many times I feel the doctors are brushing off my health concerns and strange symptoms as just anxiety. Please keep us posted as we do care and are here to support others suffering through our health crisis'.

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Could be lymph in neck. I'm experiencing the same. Have you heard of chronic Epstein Barr virus? Parvo b19 can even be in the mix to test for. ANA positive or negative?
I know this feeling. I'm living my last cycle it feels. I don't know where to go.

REPLY
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