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Old 10-20-2009, 02:52 PM   #1
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Unhappy Multiple diseases wondering if they're at all linked

I am a 21 year old female. I have had several diseases over the years but most of them are not linked. Also doctors have not been helpful with any suggestions on how to help most of my conditions. I have listed my conditions below if any one has any suggestions on how to help these conditions or what else it could be please let me know.

When I was 3 years old i was bit by a tick and not properly treated.

When I was 5 I had rashes all over my body and could not walk. I was hospitals at childrens hospital and was diagnosed with juvenile arthritis (JRA). I was in so much pain the doctor told my parents to give me double the amount of childrens motrin than what a normal child my size should be given. This lead me to vomit most of my medicine and be sick to my stomach.

My parents then took me to a doctor who suggested that I stop all beef and cow milk. My symptoms stoped and when I went back to childrens hospital they said that they had mis-diagnosed me and they did not know what i had. But the blood testes said that i did not have JRA anymore.

At age 12 I went to the doctors and was diagnosed with fibromyalgia. All of my symptoms went away until some wrist pain in my left wrist. Mostly sore and couldnt bend my hand. I am right handed so my left hand was not used a lot.

At age 13 i started having stomach problems.

At age 17 i noticed my feet were always purple and cold. I was then diagnosed with Reynolds disease. Which is a circulation issue.

At age 18 I was diagnosed with graves disease when my heart rate was so high that i almost had heart failure.

Also since i was little I have had canker sores. I have scars in my mouth from places that I have had them frequently. I usually have at least one canker sore and when they are bad i have 4-6.
Also I get sick once to twice a month. Sometimes just a cold. Other times the flu.

I work out, eat healthy and have tried multiple other things to improve my health. I sleep 9-10 hours a night. For my Reynolds disease I have tried to keep them warm and it is not usually an issue. however when i work out my feet go numb and it makes it difficult to work out.
I have tried everything for my canker sores.

If anyone has any suggested please let me know!

Summery:
I have been diagngosed with-
JRA, fibromyalgia, Graves disease, reynolds, Asthma and IBS

It has also been suggested that i have an compromised immune system. I also have canker sores and constantly sick.

 
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Old 10-20-2009, 03:53 PM   #2
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Re: Multiple diseeases wondering if there at all linked

Have you been tested for Lyme Disease ?
You mention being bit by a tick at age 3 and not properly treated ?





Wish you well
BeHappy2

 
Old 10-20-2009, 04:25 PM   #3
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Re: Multiple diseeases wondering if there at all linked

Hi BeHappy2

I was tested for it and it came up negative. But thank you for taking the time to help!!

 
Old 10-20-2009, 05:06 PM   #4
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Re: Multiple diseeases wondering if there at all linked

HI Laura and welcome - you've certainly been through the mill......you mentioned someone thought you might have a compromised immune system - I'm no medical expert but it does sound possible. Have you checked out that thought with a medical professional (or did it maybe come from one?)

 
Old 10-21-2009, 01:22 PM   #5
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Re: Multiple diseeases wondering if there at all linked

lymes disease can be difficult to diagnose if the blood work is not sent to the specialty labs. Just a thought. You may very well have a compromised immune system, have you been to a Rheumatologist to check for other auto immune problems.

Glojer

 
Old 10-21-2009, 02:46 PM   #6
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Re: Multiple diseases wondering if they're at all linked

Thanks everyone for you help.
I have been to Rheumatologist last year but Im not sure what they tested me for. I am going to look into my medical files to see how they tested me for lymes disease and if I was tested for auto immune problems. I know if has been suggested by doctors that i may have an auto immune problems however no doctor has ever followed up.

 
Old 10-22-2009, 12:44 PM   #7
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Re: Multiple diseases wondering if they're at all linked

laura, follow up is an important thing. Some auto immune problems hover just under the surface and are hard to detect. For instance, some of my bloodwork comes out positive for several other auto immune problems, but when tested 9 mo. later my bloodwork did not even indicate further testing. So had my doc not caught my bloodwork when it was ANA positive he would not have tested further or sent me to a rheumy. Still with further testing my bloodwork is not specific for any certain autoimmune disorder so I am diagnosed with undifferentiated connective tissue disease. However my rheumy treats me for my symptoms and continues to check my blood work.

I hope this makes sense to you, I think I am having a fibro foggy day.

Glojer

 
Old 10-23-2009, 11:45 AM   #8
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Re: Multiple diseases wondering if they're at all linked

Thanks Glojer. That does make sense. The newest thing that I am looking into is my vasculitis. I was diagnosed in 2006. I was originally diagnosed because of a red mark on my face. But since the mark on my face went away i forgot about it. We were never told the disease had other symptoms. But now that I am looking into it it seems all my symptoms fall under Behcet's syndrome. Which is a type of Vasculitis.

Does anyone know more information about Behcet's syndrome. Until I researched vasculitis I had never heard of it. Im thinking that I may have it since I was diagnosed with vasculitis but not a certain kind. However getting a doctors appoint is impossible. So I wont be able to see my doctor for a month and i am trying to look into the disease in the mean time.

 
Old 10-23-2009, 12:00 PM   #9
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Re: Multiple diseases wondering if they're at all linked

Have you been tested for celiac? It can cause lactose intolerance and constant cancer sores?

Good luck

gsmom

 
Old 10-23-2009, 11:34 PM   #10
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Re: Multiple diseases wondering if they're at all linked

gsmom, do you have celiac and cancer? If so, were you diagnosed with fibro before cancer?

 
Old 10-26-2009, 06:40 AM   #11
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Re: Multiple diseases wondering if they're at all linked

I have made it a point to tell my PCP that I watch a show called Mystery Diagnosis in hopes of finding answers. I am so shocked at all the different diseases out there I have never heard of and how hard it is to find a doctor to seriously take the time to help some people. I do know there are several tests for Lyme disease. One is highly sensitive and takes a little time for the results. The typical test does give false negatives. It doesn't happen all the time.

Have you been tested for ANAs? It's a simple blood test that checks for possible auto immune disorders like Lupus. I'm not sure if that would help. It took me over 10 years to be diagnosed and my PCP is not convinced it is Fibro.

My best advice is just research your symptoms online and see if you can find a doctor who may be able to help. From watching the show, most people on there have had to do this. They usually found the right doctor for them onluine. They researched their symptoms and read everything they could find. Usually, the doctor they went to is the one whose name they saw repeatedly.

Good luck!

 
Old 10-26-2009, 08:33 PM   #12
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Re: Multiple diseases wondering if they're at all linked

I would bet that all of this is related to late diseminated lymes disease. Most of your symptoms are things that can happen if lymes disease goes undiagnosed/untreated - especially arthritis, rashes, stomach problems, heart problems and fibromyalgia.

I'm not sure about the canker sores or rayanauds. but the other symptoms sure are symptoms.

even if you test negative for lymes disease, you can still have it.

i would suggest seeing a doctor who is familiar with lyme disease.

 
Old 10-26-2009, 09:15 PM   #13
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Re: Multiple diseases wondering if they're at all linked

Have you ever been tested for lyme disease? Look it up. You get it when bitten by a tick.

 
Old 11-06-2009, 07:52 AM   #14
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Re: Multiple diseases wondering if they're at all linked

Hi Laura,
Regarding canker sores, I also have had them my entire life. About six years ago I was very ill and suffering with constant multiple break-outs. the doctor I was seeing told me they were Aphthous ulcers and that the medical community doesn't really know what causes them, although stress and mouth injury seem to play a role. There is anecdotal evidence that L-lysine may help reduce the frequency of occurrences. I tried it but don't think I stuck with it long enough to see if it helped me. I have found aloe vera gel helps with the pain and seems to make them heal faster. You can buy aloe as a drink, it's marketed in health food stores as a nutritional supplement to aid digestion. You can also buy topical gel, provided it is 100% pure aloe and use it the same way you would ora-gel, or there's always the option of growing your own. I also try to avoid highly acidic fruits like pineapple and lemons - although I can't bring myself to give up the margaritas I believe Rembrandt markets a sodium-laureth free toothpaste which has helped me as well.
Good luck with everything.

Best,
a

Last edited by untouchableme; 11-06-2009 at 07:54 AM. Reason: I had your name wrong (sorry, not used to message boards)

 
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asthma and ibs, fibromyalgia, graves disease, jra, reynolds



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