my Update

[navydad]

After a overnigt stay in one of Pittsburghs premier hospitals for severe neuropathy I was discharged the next day with a scrip for Motrin,, and another scrip for a MRI of my thoracic spine,, and was told to continue to take the lyrica for the newly discovered periphal neuropathy, fast forward to this week,, after a weekend of coughing up the nasty glue like stuff,, I got a call from a case manager nurse,, she basically said,, look we have done every test, and we think its time for you to see a psych,, and she said forget about going to Philly to any clinic,, UPMC will not approve it,, my rheummys will not treat me, they both agree I should go to Philly, so there done with me,, the neuropathy in my legs is getting progresivly worse, and i just dont know what to do,, I made a appt with the ENT,, if i;m going to be a ripple,, I at least want some of this sinus issue solved,, and I had a ID doctor write me a scrip for a antifungal  he knew i coldnt get filled,, I called his office again yesterday,, told them about it,, and tehy had the nerve to ask,, which doctor wrote it,, I told them,, your doctor you idiot,, wasnet a hour later,, it got approved,, why the long wait, was it to punish me for trying to stay on top of these infections,,
  So here I am,, no dctor will see me,, none will treat me,, and now its expected for me to go back to work the week after Easter,, I guess whats going to happen is i either collaspe on he job or die from the infections in my sinuses which are fungal in nature,, its like i hav been boxed in a corner again,, with no where to turn,, my GP is worthless,, knows less about SS then my wife does,, who really doesnt understand any of this,, but thats not my problem,, I keep telling her,, tis is not my fault,,
  I;m tired of being up all night coughing up stuff that isnt normal,, tired of the r un around and finnaly being told you need psych help,, its hard to believe its come down to this,, my labs show reduced kidney function,, but nothing was done,, glucose is way above normal,,
I had a doctor come in my room at the Hospt,, and tell me almost verbatim,, you know,, the hospital is for people who are sick with things like tumors and things,, and would you please stop wasting our time and yours by cominghere,, we dont kow whats wrong with you,, and by all test results,, your normal,,
I asked about the neuropathy,, no answer,, so the saga continues

[Stillinlimbo]

Oh my gosh, thats disgraceful! I too, have experienced docs like this. I am so sorry for you. Get a new GP, one who is agressive, young, and takes interest.
Cathy

[Scottietottie]

Hi Navydad

I am so sorry that things are going that way for you. I just can't understand how they can be like that. You know maybe if you saw a psych (and I DON'T think you need one) that the psych would decide - 'hey - this man is sick - not mentally ill' and refer you to a decent bloody doctor.
I think you're being treated appallingly and I feel heart sorry for you. You have soooo many unanswered questions.

Take care - hang in there - Scottie

[Nathan]

I think it's an absolute crime how when doctors get stuck, they instantly blame you of needing psych help. They should be more open to the possibilities, not every disease renders positive test results every time. As Sjoggies, we especially know this (SS-A/SS-B being inconclusive 50% of the time, etc). The thing is sometimes giving in, and seeing a psych, even if it's for a short period of time, can have a huge effect on doctor's treatments of you. If you have a psych to back you saying, "This patient is in perfect mental health." or even "This patient is depressed and/or anxious due to the systemic disease they have, and the horrible treatment doctors give them," it not only helps the doctors determine that, yes, there is a real problem, but it can help you find validation. It may seem a bit juvenile, but it feels pretty good when you can tell a big shot doctor that they were wrong, and that you have proof of it.
The best advice I can give is, don't give up, keep pushing, and eventually you'll get the help you need, even if you need to go as far as seeing a psych to back you up.

[irish]

navydad, I have had several docs tell me that I needed a psychiatrist---I knew I didn't.

There are times when we surely do get in a quandry with out illnesses. The one thing we seem to need to do is keep calm and civil though it sure is hard to do.

I am wondering if you have attempted to get ahold of the doctor Julius Birmbaum(spelling) that has a post going on out site. I believe it is under the neurological thread. It might give you a new scope on things to get an opinion from another area. Make sure to get the hospitals and docs notes from the docs that took tests and Ct scans, etc. Call the "medical records" department as it used to be called and make arrangements to get the records sent ahead of time.

It is heck trying to get everything lined up for a new doc. Just did it today for my hubby. Good luck. Irish

[genko_b]

You have been treated abysmally by the doctors. It is beyond belief that you can be as sick as you are and no one has been able to figure something out, anyway.

The garbage you are coughing up is not your imagination. Nathan may have a point that you should call their bluff, go see a psychiatrist, and have them verify that you are not mentally ill.

I feel for you. This has been such a long haul.

Genko

[irish]

navydad, Genko and Nathan are right on when they say to get examined by a psychiatrist. Many times the regular docs think things are all in our head and when we see the psychiatrist they will determine that we are physically ill.

I know that my psychiatrist is the one who told me to "go apply for disability insurance as you are really physically ill and unable to work". I knew I couldn't work, but no one had told me that I needed to apply for disability until I saw him.

Most of us with autoimmune disease have a certain amount of psych issues because of being so ill. When a person is physically ill our brain chemicals get really screwed up and medication is generally needed. This is not a sign of weakness, it is the bodies response to chronic illness.

The chronic illness causes us to have the constant pain, insomnia, nausea, infections and a ton of other health issues. Generally an antidepressant makes our life a little more tolerable. The antidepressants are used to treat neuropathy with good response. Also, helps a person sleep better and just takes the edge off so that we are not as uneasy or irritable.

Be aware that many times antidepressants will cause some constipation. However, there are some really good ways to treat this besides the over the counter medications. One of the doctors who has a medical column just had a "recipe" in the paper the other day. It is equal parts of prune juice, applesauce and oat bran. I think the oat bran can be bought at the health stores.

Another thing that works well is to grind up dates, raisins and oat bran. I would bet that if one added some peanut butter to this it would make a tasty treat. Also have to drink a lot of water to help move things along. When I was working as a nurse I would always work with patients to help them keep bowels under control so that they could continue to take their antidepressants. Good luck. Irish

[Sandra]

So sorry for you misery, and i know it's so as I have been dealing with much of the same symptoms, lung issues like the cough you decribe, burning mouth, thrush, gallbladder, GI stuff and i know there is nerve stuff going on. But My rheumy is good and she knows it too so they have been slowly poking and proding to figure it out.

About the phsyciatrist, it's funny as I ended up after my old gp was constantly saying I was depressed and a dr -do -little, finally I just told him ok fine. If you think it's a head issue (and I don't deny that this stuff we deal with is hard and causes loads of emotional baggage and frustration but that's different from depresssion) I want to see a psychiatrist. That ended that never, made the referral, never said anything elses about depression being my entire problem. BTW my ESR is always at about 97 where it's supposed to be high at 20! Well he never did anything to help me with the sjs and AI stuff either before or after that. So can you imagine just to get away from him (drs are very hard to get here) I left him for a nurse practioner. So between her who seems to be on the ball and my local ER that is who I will count on for my reg issues and then my specialist about 2 hrs away for the big stuff. Gees! it sure isn't easy.

Something I have found to hepl allot with the yeast, is yogart pills. it's all the good bacteria you need to keep the bad bacteria from geting too overgrown. Bacterial overgrowth. It helps get my bowel funtioning again too and the gallbladder sludge to clear out. Lots of melon and water too. It works the best I've tried so far and I don't have to eat my weight in yogart everyday to get the benifit. Wish I could offer help with the nerve stuff, boy it's painful, set back for a day or too and do what you have to to get up and fight again. Take good care, Sandra