A little worried-thank you in advance.

[mersault22]

Before I tell you my situation, I really have to say that I have been reading posts on this forum for a little while and the community you have is amazing. I think it is so incredibly selfless of you to take time to respond to those who are deep in the throes of anxiety/hypochondria the way that you do.

I am going to be upfront and say I am aware that this is a distinct possibility in my case as well.

I'm a 37 year old male. Last october I started having some shortness of breath issues. i've had asthma since i was a kid so it was chalked up to that. All of my o2 sats were always fine, had a clean chest x-ray, etc.

I then had a minor surgery which led to a major surgical infection, which led to a hospitalization. When I came out, i was still having the breathing issues, now some bad cramping in my calf. Ultrasound showed no clots.

I then started to get sore throats a lot. Then hoarseness. Then swallowing started to feel like a chore. Never overly painful, but like I'm not getting it all down, or like there is someone holding onto my throat as I attempt to swallow. I went to an ENT who did the scope down my nose and said that my chords were all fine just mucousy. He sent for a CT scan of the neck, which also came back fine.

I saw a pulmonologist who did the spirometry test. That was mostly fine except i was actually exhaling too much air or something like that. He thinks the hoarseness and lump in throat and all that is post nasal drip.

But, I've been feeling as though my tongue is weak. I havent' had slurred speech, but my voice has changed (the hoarseness) My wife thinks I just sound like I need to clear my throat. I have started to have pretty persistent twitching in my right shoulder. And, just today, the right tip of my tongue began to twitch (kind of like a muscle spasm in my tongue)

I read all of the stickies and I honestly have read them over and over again. I bookmarked the main one so I could go back to it when I needed reassuring. The thing that is concerning me now is that my breathing has never really gotten any better, and now the tongue and swallowing/change in voice issue.

I haven't seen a neurologist because I have spent so much time in doctor's offices and I know that I am prone to hypochondria and wanted to try to beat this one without running out for testing.

Please, if you are suffering from this awful disease and it is a struggle in any way for you to reply to me, don't. But if anything in what I am saying raises any alarms at all, I would like to take the appropriate measures. I won't argue with you and try to prove to you that I have this disease if you think I simply need to move on.

Again, I am in awe of your community and I wish all of you nothing but peace and love.

 

[lgelb]

Hi, EB. Former SB resident here.

1) Understanding you don't want to mention the surgery, can you mention the infection site and which abx you got infused for it?

2) Were/are you on meds for the asthma?

3) What does the spirometry note actually say?

4) You mention a neck CT and a chest X-ray; did you have a chest CT?

5) When (doing what), for long and how does the breathlessness present?

Best,
Laurie

 

[mersault22]

Thanks for the reply

1) no problem mentioning. I had a urachal cyst removed. Basically a remnant of my umbilical cord which never disintegrated and was causing persistent infections. The cyst was benign. The infection was cellulitis. I was on three different iv antibiotics for 3 days straight. One was levaquin and I honestly can't remember the other 2.

I'm on singulair, symbicort(just started), and pro air as needed.

I'm not actually sure what the spirometry note said. The doc just told me that the numbers that were in the red were too high, not too low.

No chest CT as of yet.

The breathing thing is more like I almost constantly feel as though I can't breathe OUT enough. I honestly feel it most when I entirely distend my stomach (guess I usually am sucking it in)

 

[lgelb]

So what happens with diaphragm breathing, where you breathe in and puff out your stomach, then reverse the process?

If you read the stickies, you'll see we advise lassoing and keeping a copy of all your records such as labs, X-ray, CT, the PFTs you had. Then bring copies to your future consults. It would be nice if offices did all this or if there were a central hub but they don't reliably, and there is not.

 

[mersault22]

Yeah that's good advice.

Generally speaking, I am able to breathe pretty well from my diaphragm. (I was an actor/ singer for many years and was trained to do this). Also I can hit the top of the incentive spirometer pretty consistently.

My GP has pretty much told me she thinks it's all anxiety but doesn't feel that way.

 

[lgelb]

The quinolones (e.g. Levaquin), not to mention other abx, can cause a host of lingering effects, as can fighting off cellulitis. Give yourself time and consider hot tubbing, massage, Pilates, Tai Chi and other modalities that can help your muscles elongate and reset. You might also work on a "brighter" (from the electrolyte/color perspective) diet. And sleep/stress, of course.

If time doesn't help, a good next call might be to an ENT to look harder at an asthma/allergy/residual bacterial infection triad.

 

[mersault22]

Thanks for your thoughtful response. All of that makes sense. I think I found myself here because I have been on a search for answers that has gone on for a while and I've allowed my mind to take me to the most extreme places. A GI doc asked me (during routine questioning) if I'd ever had any neurological issues with my swallowing. I wasn't sure why he asked and when I investigated it took me down this path.

Thank you again for your time.