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Where can you go when all the doctors have no clue?

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Old 10-22-2009, 10:28 AM   #1
Join Date: Oct 2009
Location: Pennsylvania
Posts: 9
Robin71 HB User
Where can you go when all the doctors have no clue?

Sorry all, I need to vent - I just came from the doctors and it looks like my short term is about to go long term - guess there goes my job.

So, after 6+ weeks I am now being shuffled off for an appointment at Temple with one of the doctors in the specialty center.

I have extreme nausea, vomiting, upper quadrant pain (between ribs, upper stomach), I haven't eaten an entire meal since mid-August.

I've lost more than 22 lbs. since mid August, and even a girls size 12 is too big.

I failed a HIDA Scan, they couldn't even give me the cck, there was no dye to check the contractions.

I failed a gastric stomach emptying test - nothing coming through - event though I do have regular movements almost everday.

I've also had an Upper GI w/air, more blood work than I knew existed, a colonoscopy, and and endoscopy.

So, when is enough enough? When is the weight loss and malnutrition enough to have a doctor send me to the nearest ER or hospital?

When is the tired and sickness going to end?

Oh, did I forget to mention I have Narcolepsy, Cataplexy, REM Sleep Disorder, Advanced Fibromyalgia and possibly another autoimmune disease, and compression of the cervical spine. Lucky me, these are all now a mess and unmangeable and will need to be restabilized AFTER the GI issue is fixed.

I am negative for physical therapy and medications (intolerant - my body does not get relief or better through these means).

Everyone asks me how I am mentally. What do they think? I'm stressed out, tired, anxious, sick, tired, sick, tired, and now on the verge of being depressed - and I am never depressed - ever.

I'm tired of being thrown from doctor to doctor.

The US Healthcare system sucks.

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Old 10-23-2009, 04:28 AM   #2
Join Date: Apr 2005
Location: Birmingham, AL
Posts: 19,270
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Re: Where can you go when all the doctors have no clue?

Sounds like classic gallbladder problems. You don't mention it but have you had an ultrasound?

Old 10-27-2009, 08:38 PM   #3
Senior Member
Join Date: Apr 2009
Location: caledonia wisc usa
Posts: 106
jamman3 HB User
Re: Where can you go when all the doctors have no clue?

I cant diagnose for you and I know how your feeling ,about your job you should go on the family medical leave act it will protect your job under the term "leave for a persons chronic medical condition" what i think you need to do is find a better dr. specialist or something, have faith and good luck with your cure!

Old 10-29-2009, 10:08 AM   #4
Join Date: Oct 2009
Location: Pennsylvania
Posts: 9
Robin71 HB User
Re: Where can you go when all the doctors have no clue?

Thanks for the responses (I am new to the forum). Sorry this is long – but the good part is at the end!

Gallbladder disease is what all my other doctors said as well (Sleep Specialist, Rheumatologist, Therapist). I had the classic and typical symptoms of gallbladder disease.

I have not yet had an ultrasound. I was referred to the surgeon first, and he said he did not want to remove the gallbladder without checking the stomach.

He referred me to a new (better I question) GI, and I had a stomach emptying test, upper GI, and blood work for celiac disease and thyroid (the blood work and upper GI were fine).

The stomach emptying test showed there was little to no emptying in the 90 min test period.

However, that test was done so close to discharge from the hospital that I hadn’t even recovered from the colonoscopy and endoscopy yet – I think the test needs repeated. I think it may be slow emptying – but I know there is something moving through.

I am currently on FMLA, but it only provides 12 weeks of protection. This is the end of Week 6; I am currently waiting for the extension of 6 more weeks to be approved by my short term carrier.

My primary doc says it could realistically be 2 or 3 months more to get all this taken care of though. Once we have the GI issue resolved I will still need to go back and stabilize my Narcolepsy (geck - I failed my night study and my wakefulness test; my REM sleep is a disaster), my c-spine nerve compression issues, and my advanced fibromyalgia.

I think everyone is missing something BIGGER than all of this.

Sept. 1 was the last day of my 5 day visit in the hospital; where, of course they stated I had no pain or GI issues upon discharge (really, honestly, would you know if you were in pain if you were on a regular course of IV dilauded?).

The hospital record was so inaccurate it was like reading a joke but I was able to pull out just enough clues from the written record.

1) I was not taking 2 meds because the hospital did not have them;
2) I was on major pain killers for my Fibro (which is now back);
3) I got badly needed Nutrition, my hair grew 4-5 inches in 5 days, and I walked out with a full set nails.

Total I have gone from August 12th to August 27th and September 1st to October 22nd with NO SOLID FOOD AT ALL.

Now - my hair is breaking off and falling out, and my nails are chipping, shredding, breaking, and all but gone. I am weak, tired, and have a cold, or the dreaded flu, because my immune system is a mess.

I need NUTRITION. Where can I go – what can I get – I need what red meat gives you – I will not let my body go to waste – I am already sunken in like a skeleton at 5’1” and a loss of 25 lbs to current 100 lbs. Why isn't anyone else freaked out that I am all skin and bones - litterally! My hourglass shape is GONE. I pin my clothes on, they are a girls size 12.

However, a funny thing happened since my last post. My (primary) doctor put me on a new medication that is used on geriatric patients to make them want to eat.

At the same time, I decided to be my own advocate and stop, cut back, or taper off taking all the new meds for GI, Fibromyalgia, Narcolepsy, etc. that I started this year.

I found the most fantastic website for medications. I don’t know if I am allowed to say it here.

I SAW what I needed to do with my meds, and did it. I am tracking them there as well.

Note: I still have nausea, stomach pain, and some days where I just cannot get near food or liquids.

HOWEVER; October 23rd I ate a full, adult sized meal. Since then, I have been able to eat one meal every other day at night before bed. I’ve had two nights where I ate everything in sight like I never saw or tasted food in my life.

Possible conclusions?

Medications contributing to or causing gastroparesis?
New medication is working and making me eat?


I have no clue what meds I can or cannot take, and
I am still not gaining any weight, strength, etc. back - is that a sign that my body is severely nutritionally depleted?

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