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Old 07-07-2009, 03:36 PM #1
littletsunshine littletsunshine is offline
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Confused Loosing hope, functionality and patience..please help

Ok so I have had symptoms for most my life. I was always told it was in my head. Digestive problems, joint pain and inflamation, loss of range of motion in my joints, skin issues(unknown undiagnosed rashes), osteopenia, kidney issues(swelling for no reason, pain, eventually cleared after a stent placement but no stones) and even had sinus tachycardia that randomly went away on its own, ohh and dont forget the mental illness(supposedly bipolar but the meds dont work and after 10 years found nothing to help even experimental drugs, heck most the mood stabilizers made me hallucinate!) Been more stable for over a year off meds than I was on them!

A couple of weeks ago my newish primary care touched on something he thought might be it. He thought I had celiac disease, all the blood tests were positive but just found out today that the intestional biopsy was negative..ohh and of course put me on nexium cause of esophogeal errosion and sent me home with a picture of it. Yey thats gonna solve all of the above. The joint problems are bad enough we had to get me a wheelchair which of course Im not well enough to power myself. So now unless Im having a good day, someone has to take me around. I cant even get out of our place alone. Loosing hope and patience. At least from what the dr had said Celiac I could get some assemblance of a life back. Now only left with pain.

Any Ideas what this could be?? Help I can not live like this. I shouldn't be incarcerated at home im only 31.

Been tested for Lyme, Lupus, RA, and Celiac

DX with fibromyalgia(think the rhumatologist dumped me in that category cause he didnt care to try to figgure it out, doesnt even treat that!)
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Old 07-07-2009, 10:32 PM #2
heartbeatmom heartbeatmom is offline
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heartbeatmom heartbeatmom is offline
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my mom has a lot of those symptoms and after a long time of not knowing what it was, she was diagnosed with scleraderma. She went to the University of Pittsburgh where there is a research center (also TX and WA) and they knew right away what she had. Other docs said carpal tunnel, arthridis, just getting old...sad really. One doc thought she just needed antibotics.

She is now 12 years in remisson.

There is a website for scleraderma...a lot of docs dont know what it is, and what it does to the body...differant symptoms but same disease.
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Old 07-07-2009, 11:25 PM #3
littletsunshine littletsunshine is offline
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Thanks for the suggestion.
Yey that is one that hasnt been tested for yet, but It looks like its not a very high percentage of people that even come up positive on the blood test that have it. My rhumatologist would NEVER diagnose unless it was positive no matter what.

Medically we are kinda in the Dark ages here. I doubt I will ever get an answer. I requested a refferal to another rhumatologist cause mine doesnt seem to care and my primary care deflected the request. The next real city is 3 1/2 hours from here, not only can I not afford the gas but I couldnt bear sitting in the car that long

I want to ball up in the fetal position and cry but I cant bend that much right now
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Old 07-08-2009, 06:08 AM #4
glenntaj glenntaj is offline
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glenntaj glenntaj is offline
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Default Almost everything you've reported--

--could be due to celiac/gluten sensitivity. And while a positive finding of villous atrophy is the gold standard for diagnosing celiac, some people's damage is spotty enough thtat it's hard to find, or the pathologist may not have much experience in looking for that type of damage, so I would be suspicious of that negative biopsy result if you have positive blood test results.

The skin rashes, when you get them, can be biopsied to look for the tell-tale IgA deposits of dermatitis hepatiformis, which is also diagnostic of celiac.

Where do you live? It may be worth it to get to a specialty center.

I would also recommend a major look at our Celiac/Gluten Forum here:

http://neurotalk.psychcentral.com/forum13.html

--especially the famous Gluten file, probably the most comprehensive database on the subject ever devised:

http://neurotalk.psychcentral.com/thread1872.html
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Old 07-09-2009, 10:39 AM #5
pabb pabb is offline
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Quote:
Originally Posted by littletsunshine View Post
Ok so I have had symptoms for most my life. I was always told it was in my head. Digestive problems, joint pain and inflamation, loss of range of motion in my joints, skin issues(unknown undiagnosed rashes), osteopenia, kidney issues(swelling for no reason, pain, eventually cleared after a stent placement but no stones) and even had sinus tachycardia that randomly went away on its own, ohh and dont forget the mental illness(supposedly bipolar but the meds dont work and after 10 years found nothing to help even experimental drugs, heck most the mood stabilizers made me hallucinate!) Been more stable for over a year off meds than I was on them!

A couple of weeks ago my newish primary care touched on something he thought might be it. He thought I had celiac disease, all the blood tests were positive but just found out today that the intestional biopsy was negative..ohh and of course put me on nexium cause of esophogeal errosion and sent me home with a picture of it. Yey thats gonna solve all of the above. The joint problems are bad enough we had to get me a wheelchair which of course Im not well enough to power myself. So now unless Im having a good day, someone has to take me around. I cant even get out of our place alone. Loosing hope and patience. At least from what the dr had said Celiac I could get some assemblance of a life back. Now only left with pain.

Any Ideas what this could be?? Help I can not live like this. I shouldn't be incarcerated at home im only 31.

Been tested for Lyme, Lupus, RA, and Celiac

DX with fibromyalgia(think the rhumatologist dumped me in that category cause he didnt care to try to figgure it out, doesnt even treat that!)
YES I AM SCREAMING AT YOU! THOSE TESTS ARENT POSITIVE BY ACCIDENT!
as glenn has said, sometimes the damage to the intestine is spotty enough, or the technique is bad enough that the lesions are missed....if i were in your place, i would begin a gluten free diet IMMEDIATELY. you do not need a dr. permission to do so,,,, i know that if you are in a country that will give you a subsidy for food you need the dx, but is your health worth that?....please act now
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Old 07-09-2009, 10:56 AM #6
pabb pabb is offline
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Quote:
Originally Posted by heartbeatmom View Post
my mom has a lot of those symptoms and after a long time of not knowing what it was, she was diagnosed with scleraderma. She went to the University of Pittsburgh where there is a research center (also TX and WA) and they knew right away what she had. Other docs said carpal tunnel, arthridis, just getting old...sad really. One doc thought she just needed antibotics.

She is now 12 years in remisson.

There is a website for scleraderma...a lot of docs dont know what it is, and what it does to the body...differant symptoms but same disease.
http://sclero.org/medical/symptoms/a...se/a-to-z.html
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