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margot69
@margot69

Posts: 4
Joined: Oct 26, 2018

Seariously at the end of my rope with ENT issues

Posted by @margot69, Fri, Nov 23 6:22pm

Such a long story but, in a nutshell, I am miserable daily and can barely function. Some years ago, began having chronic dry mouth and throat which has worsened. I had to have $12,000 worth of dental work done. I gave a continuous feeling of a lump in mytNow great. I deal with thick mucus. I keep telling the doctors the "tissue" of JystJust tongue, palate and throat don't feel right. I have a very hoarse voice. I generally feel unwell. Have seen a few ENT doctors, been scoped, told vocal cords are swollen. All this started about 10 years ago when I got very sick after an oooherectomy, lost 40 lbs, slew of GI tests. Referred myself to Stanford and was put on Gabapentin, and various other drugs that did not agree with me. I then developed small fiber neuropathy in my feet (confirmed by punch biopsy), idiopathic. I was already on Gabapentin and did not want to try Lyrica. Blood test showed possibke MGUS (?) so was referred to hematology where I now have to go every 6 months for bloodwork and yearly, full body X-rays checking for Myeloma. I do have 5 thyroid nodules and a cyst, been biopsies but was told my throat issues and feeling unwell are unrelated. My PCP and local ENT doctors say there is nothing else they can do. I only take Gabapentin, Ranitidine and a small dose of Alprazolam daily plus Vit D, B-12 and Eye Promise and a baby Aspirin daily. I just feel horrible and uncomfortable 24/7. So much for enjoying retirement. Any suggestions?

REPLY

@margot69, Hello and Welcome to Mayo Clinic Connect. Thank you for posting. I'm sorry you are suffering.

I wonder if you have looked into or considered coming to Mayo? The ENT department in Rochester has access to specialists within the building (voice specialist, swallowing therapist, ENT, pathologists) that work together to create individualized care. It may be worth looking into. Here is a link for information on obtaining an appointment- http://mayocl.in/1mtmR63

@jamienolson

@margot69, Hello and Welcome to Mayo Clinic Connect. Thank you for posting. I'm sorry you are suffering.

I wonder if you have looked into or considered coming to Mayo? The ENT department in Rochester has access to specialists within the building (voice specialist, swallowing therapist, ENT, pathologists) that work together to create individualized care. It may be worth looking into. Here is a link for information on obtaining an appointment- http://mayocl.in/1mtmR63

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Thank you but that is not a possibility. I am in Ca and I could not make that trip and no way would my husband take me. There must be something on the West Coast. I have been to Stanford and they are of no help. I am also sick to my stomach again this morning. I don't even want to get up and struggle through a day.

My partner has dementia but constantly complains about echo in his left ear

what about people that don't live in the mayo areas how do we get help?

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