Have you been where I am and gotten better?

Question

I am so frustrated with all the doctors I have been going to and have lost faith that their diagnosis is correct. Actually started last Oct, started feeling like I had a hair ball in my throat..many trips to the doctor office tested for Strep which was always negative and treated me for sinus infections which were really there. I also have had a white coating on my tongue which they thought was yeast but turns out it was my very weirded out salvia. Which they said was my immune systmen attacking my salva. Went to the ENT Doctor on the 11th for the first time and he said I had reflux disease and put me on prevacid they had to put me on the disolvable ones cause everything was too swollen to swallow. Sunday I had a vocal cord spasm which closed off my air supply, breifly but enough to scare the heck out of me. Went to ER after talking with Parmaetics and they just said that if was from the swollen and don't worry even if it shut off totally i would just pass out and the spasms would stop and i would breathe again (this of course is something that I am looking forward to) They started me on low does prednisone 15 mg day on Tuesday, Wed my tongue swelled..back tongue glands and then the increase the prednisone to 60 mg day on a decreasing dose...after taking my first 20 mg does my tongue swelled hugh and had to call ambulance who said it was allergic reaction probably to pred but doctors kept me on it with benadryl..I am waiting (not patiently) for a nasal esphagoscopy which so far is not til the 11th of June. I have dropped from 135 on 5-2 to 124 today..I am scared and not trusting diagnosis...please have you been here? How long did it take to get better....Now of course they are saying that anexity of not knowing is making the symptoms worse...I admit the anexity but I can't beleive that it is causing the tongue to swell to where it hangs out my mouth or the salvia problem that made the pharametic think that there was something stuck on my tongue impeding the airway until he scraped it and found that it really was salvia...I know lot of information....sorry rambling...just scared..

helpless2569 · Answer

Thank you so much!  I was wondering the same thing today and decided to make an appointment with an allergist.  I have never been allergic but who knows sure seems like since it is not getting better on the treatment that I am.  Today at least the ENT gave me his diagnosis, though I am still waiting on the test...Laryngopharyngitis, Gastritis, Acute and Chronic Esophageal Reflux.  But I am still going to see if I have developed an allergic reaction to something because they have yet to prove the other.

mommy-s · Answer

I know what you are going through. My husband had a problem like that last summer. His throat would close up on him and he had excess mucus. The doctor told him it was gurd and gave him meds but they didn't work. They scoped him and check his throat and couldn't find anything. He also had a MRI of his throat. After all of the tests they decided to try a allergy medication, allegra. He has not had a problem since. Hang in there go to an allergist and see if your allergic to anything. Good luck!

helpless2569 · Answer

Thanks.  I have a thyroid ultra sound sceduled for the 4th I think it is thyroid myself but trying to play by the doctors rules.  WE thought that the white stuff was the candia and it was treated for that with medication and yogurt everyday twice a day for 6 months to no avail.  I have lost about 11 pounds since the 2nd, the thing that concerns me the most is the swelling glands in the back of the tongue which I don't think that they have offered any explanation for.  Yes I know the anexity has gotten much worse over this...they have me on 1 mg lorazepam 4 times a day and also want me to take benadryl 4 times a day if i did that I would be a zombie!  I just keep hearing what an emergency it is for me to get this test but yet everyone is booked out in Vancouver and Portland so just trying to deal with it.  How long did you have your symtoms before they diagnoised it?  How did they finally find it?

getrightonit · Answer

I was diagnosed with a hyperthyroid after being to many docs and they couldn't tell why I was feeling like I was choking all the time. I lost 52 lbs in a matter of 4 months and they couldn't tell me anything. I got the radioactive tests done on my thyroid and they found that I had a cyst on one. It was abnormal cells and they are keeping an eye on it. I found that the anxiety from all of it made things considerably worse. One more thing, the white coating on your tongue could be candida and it might not hurt to ask your doc about it. Look up on the computer what it is and see if it applies to you. Good luck.

helpless2569 · Answer

Well today is better at least no hospital trip.  They have me on prednisone, benadryl, expectorant, cold fluids.  of courses didn't hear from the doctor today regarding a closer appointment.  I can't think of anything different that I changed in October.  I have been on the same medications for years, I don't really try anything new, have had an abnormal fear of being allergic to stuff for quite a while so guess I know why now..funny how those things happen.  I just have a hard time believing that this all because of reflux but I will apologise to the doctors if they prove that that is what it is.  I read through all the questions here and I didn't even see anything similar to my problem which of course makes it worse.  They also want me to take lorazepam 4 times a day, if I did that with all the benadryl I would just sleep for the next 18 days waiting on the test and I have to work so can't do that.  I do notice that the more stressed a get the tighter the constriction in my throat.  I am also scheduled for an ultra sound on my thyroid Jun 4th so who knows maybe that will show something.  I will wait for my June 11th exam then if nothing I will demand a MRI.  Just trying to hang in there it is tough some times but I feel like I am keeping it together pretty good after all I am not sitting in the parking lot of the hospital yet.  I am carrying my epi pen everywhere.....makes me feel safer anyway.

Thanks for your reply and concern it was nice.

ggreg · Answer

Dear tongue person,
Wow, I sympathize with you being bounced around from doc to doc, practically choking to death, and still sick.  I have heard of people who have swollen tongues.  I am not an expert in your situation, but I do know a little about breathing problems and a dry mouth.  

Did your ENT talk about your tonsils?  Also, you REALLY sound like you've got an allergy, which an allergist can address.  The diagnosed acid reflux can do a number on your esophogus, and your sinuses draining into your throat can cause all kinds of wierdness. 

I have a few simple suggestions in the meantime, which may or may not help:  Daily, at different times, take alka seltzer, take some liquid B vitamins, and gargle with mouthwash.  There is also a saline nose spray you can try.  Take some steamy showers to relax and open your breathing.  Do some long walks to get your rhythm back.  Do all these for about a week.

One other thing, you said all this started in October.  Did you begin taking any particular new medication in October?  Sometimes meds can do this sort of thing, dry out a person something fierce.  Some foods can, as well.  Did you add a cat or bird to your household?  If you can remember ANY change back in the fall, then perhaps you can realize what may be causing a possible allergic reaction.

Post back as to how you're doing.

Have you been where I am and gotten better?

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