Discussions By Condition: I cannot get a diagnosis.

I'm sure this is pointless....

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Lisa0721
  • December 8, 2008
  • 02:59 AM

I guess I've pretty much given up hope on finding out what is wrong with me. For some reason, all my lab work and exams and everything indicate I'm healthy as a horse, so why do I feel like I'm dying all the time?

The problems change pretty much from week to week. Like this week, I've got some kind of ulcer thing on the right side of my tongue. And my throat on that side feels raw. That's enough to make me miserable in itself, but I can also run my finger along my right jawline up to the bottom of the jaw joint itself and in that sort of soft spot between the jawbone and the throat and behind my ear lobe, it's painful and irritated. I've been scoped by two different ENT's. They say I have fluid on my vocal chords from untreated allergies, which is incurable. I've learned to live with being hoarse. I just don't talk much anymore. But this jaw-joint behind the ear thing, I can't get a diagnosis on. I can remember once when I was in my 20's, I had something like this and it took months to get a diagnosis and my eustachian tube was plugged up, but both ENT's pooh-poohed that.

I had bad neck injury when I was 14 years old, I got thrown off a horse and slammed head first into the ground. I'm 48 years old now. Three years ago a lump came up on the back of my neck in that spot. I've been to doctor after doctor who assures me it is nothing but a big wad of stress. But from that lump comes some of the most hideous pain you can imagine. I nearly went to the hospital 5 nights ago because it felt like someone was shoving a hot knife straight down into my shoulder. I couldn't lay down, I couldn't sit down, all I could do was pace. I took Advil and then took Aspirin in case it was a heart attack. I didn't know what else to do.

Sometimes, I can hardly walk. The muscles in my calves tighten up so bad that I hobble along, that makes my feet hurt too.

I went through menopause early and because I still have my uterus nobody will give me harmones. My skin is so dry that when I shave my legs, it comes off. My hair is falling out. In four years time, I went from being thin and beautiful to looking like a tired, fat, old hag. I gained 65 pounds in four years. I went to doctor after doctor, paid a dietician for weeks on end, who told me "You are eating right, you'll lose the weight". If I work out, I'm in agony all the time, every muscle just feels like its torn up. I go for rolfing every month. It's the only thing that keeps me up and walking. Otherwise, I'd just lay down and die. I can't even enjoy a pedicure anymore, because the last time I went, the pedicurist went to clip my toenail and the whole thing came off. It didn't hurt or anything.

I always had unexplained pain and fatigue. Well, when you hurt all the time, you are always going to be tired. I always thought that when I was young, I must have caught a virus. I lived in Florida back in the old days, when it was tropical and undeveloped. I was fine until I turned 15 and then all the pain began. I went to the best rheumatologist in Fort Worth, Texas. She tested me and tested me, ruled out Lupus, Rheumatoid Arthritis and a host of other things. I got a diagnosis of costochondritis and she thought I had the beginnings of anklosing spodylitis. Well, she kept giving me heavier and heavier medications and it wasn't getting rid of the pain, it was just turning me into a zombie. So finally she told me she gave up. She told me I'd most likely be in a wheelchair by the time I was 30. So then I gave up on doctors. I went holistic, with acupuncture, rolfing, chiropractic and herbs. For a long time, it was like I was in remission or something.

But then came menopause.

I'm scared I've got cancer and they just haven't found it yet. I don't know what's happening to me. I just keep swallowing Advil. I want somebody to cut my jaw open and look at it and see if they can find out what's going on in there.

Does menopause do this to women? And why doesn't anything show up in all the lab work I've had done. Everything is like perfect, except my thyroid is on the lowest end of normal.

I don't expect a diagnosis here. I guess I just wanted someone to listen to me. I'm messed up. And Sometimes, I'm so depressed. I look so bad now. It's aging me.

What kind of a doctor do I need to go to. The doctors down here in Florida are so packed with patients that I'm lucky to get someone to talk to me for 5 minutes. How does a person get a diagnosis on a lifetime of pain in 5 minutes time? And this doctor merry-go-round, I just can't do it. And if they can't throw a pill at it and make it better, they don't want to deal with you. They don't want you if they can't fix you easily. You can look at this website and see the agony on it. All these people begging for a diagnosis. I called to get an appointment to get a mole looked at and the soonest the doctor could see me was March 4th. And that was a month ago that I made the appointment.

Thank you for listening.

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1 Replies:

  • Have you been tested for celiac disease? Your joint pain & mouth ulcer make me think of it. Try here: http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm Weight gain is also a symptom of celiac in some people.
    aquila 1263 Replies
    • December 11, 2008
    • 04:57 PM
    • 0
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