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Wondering if I have a immune disorder

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Old 10-20-2009, 01:56 PM   #1
Join Date: Oct 2009
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laura1611 HB User
Wondering if I have a immune disorder

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!

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. Mayo clinic also suggested that i may have celicas however one doctor claimed i had to have it while another doctor said i did not.

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Old 10-20-2009, 03:00 PM   #2
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Re: Wondering if I have a immune disorder

HI. I battle immune disorders so I thought I'd jump in for a couple of reasons.

First, your problem with your cold hands and feet is Raynaud's Disease. Helpful to know the real name when researching. I have it too. Second, the JRA seems to have been a misdiagnosis and it doesn't go away by restricting milk and beef. But that restriction tells me that you probably have food allergies and that would explain the IBS too. Food or milk allergies are the culprit behind a lot of IBS. And of course, asthma can be allergic or non-allergic. Allergies have a lot to do with the immune system and a trip to an allergist for a thorough workup might be in order. Could be your JRA type episode, IBS and asthma are all allergic in nature and may be treatable.

I take it you are still under treatment for the Graves disease?

Now for fibromyalgia. Fibro is a pain disorder...that is the latest finding. As you know, there are no tests to confirm fibro and many docs question it's existence. But new tests on the pain thresholds of people with fibro do show the pain centers of the brain lighting up with minimal stimulus compared to a control group. But that is not being done to test for fibro so even the "growing pains" of a 12 year old can be misdiagnosed as fibro. You might want to see a rheumatologist to confirm that diagnosis as it normally isn't applied to children.

Other than Graves Disease, the other problems you have had are all up to interpretation as to whether you had them or if they are being caused by what was originally thought. Fibro was originally thought to be a type of arthritis but now it is neurological(but neurologists still don't treat it). IBS was thought to be a possible precursor to colitis but now, the prevailing theory is that many cases are lactose intolerance or food allergies. And JRA doesn't go away with food's a very serious illness that can follow you for life and disable you. As for the Raynaud's, it probably accompanies the Graves disease.

So I'd go see a rheumatologist and an allergist and tell them what you have been told and ask for the latest in tests to either rule these things out , or figure out what is wrong and get help.

I just spent 15 months going through test after test for a problem with my vision. It wasn't an eye problem but a brain the optic nerves. Test after test at big bucks and a super-specialist who took 4 months to see and get any return appointments...made it soooo slow. Then my rheumatologist put me on a new medication for by rheumatoid arthritis and my vision cleared up. Super specialist guy(he was even on Mystery Diagnosis) says....guess it's rheumatoid optic neuropathy and sent me home. All those tests for nothing as the medication fixed it.

So if even a doc featured on a national TV show as the doc to go to when no one knows what is wrong can screw it up, then you know the everyday doc can too. As new tests become available, you need to try them. And as old diseases get new updates as research figures out the problems(like IBS and asthma)you need to find out if you still have them. I was told I had asthma for years..I don't. I have lung damage from something else that mimics asthma. Symptoms are similar but treatment is totally different.

So please get yourself checked out. Might just turn out you are a lot healthier than you think you are and wouldn't that be a nice gift to yourself.

gentle hugs..............Jenny

Old 10-21-2009, 12:19 PM   #3
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laura1611 HB User
Re: Wondering if I have a immune disorder

Hi Jenny, thank you for all of your suggestions!

I was tested for lactose allergies last year and was not allergic to lactose. I haven't had milk in about four years and stopped eating other milk products for a year and I saw no improvement in my IBS symptoms. I also went on a gluten-free diet for two months and saw no improvement.

Right now my main concern is how often I am sick. I get the flu or a bad cold once or twice a week. Something that most healthy 21 year olds do not seem to have a problem with. Also my cancer sores cause horrible head aches and make eating and talking a chore.

Right now I am not being treated for Graves disease. We were able to control it with medicine and I no longer need to take the meds.

I saw a rheumatologist a year ago who suggested the pain in my left hand may be my bones "remembering" the JRA I had as a child. She said some patients outgrow their arthritis but their bones remember and that could be causing the pain??? That was her suggestion at least.

At this point I dont know who else to see. I have been to Mayo Clinic twice and they tell me different things. One doctor said I had celiacs while the other said i did not...they asked me to come back a third time. However the travel expenses and all the medical bills are just too much. Especially since I have already been there twice and they didn't help at all. Except with telling me what disease I had which I already knew.

Thank you again for taking the time to make all of those suggestions!

Old 10-21-2009, 05:43 PM   #4
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Re: Wondering if I have a immune disorder

Now with that info, I can make another suggestion....see a gastro-enterologist. IBS is sometimes diagnosed before they discover it's really Crohn's Disease, an inflammatory disease of the colon that has an arthritic component called Ankylosing Spondylitis. This would explain a lot of your joint pain, the Raynauds, and possibly the fibromyalgia. Have you ever been given a colonoscopy with a tissue sample taken for Crohn's?

My adult daughter had similar symptoms to you nand was told it was IBS and fibro but after bleeding from her colon, they finally tested her(colonoscopy) and it came back positive for Crohn's. Now they are watching her for AS as she has developed some arthritis symptoms.

The problem, as you well know, is that your symptoms are so vague that it could be anything. But once you have one autoimmune disorder, you tend to be prone to more of them. I'd watch for more bowel symptoms and consider asking for a colonoscopy to rule out Crohns...or rule it in. It's one of those diseases that is best if treated early. It does include a lot of your symptoms but it's not something I would want anyone to get so I didn't even suggest it. I see what my daughter is going through and I don't wish it on anyone. Not that bad really...just mom's hate to see their kids sick.

gentle hugs..............Jenny

Old 10-21-2009, 09:14 PM   #5
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Re: Wondering if I have a immune disorder

JRA + Celiac + Autoimmune Thyroid (Graves or Hashimoto's) is a classic triad, often seen together. Recurrent canker sores (that don't heal well, so they scar) are very common with Celiac.

JRA goes into remission during puberty in about 50% of cases. Mine did not, when it continues into adulthood they call it "chronic" JA.

I was diagnosed with JRA in infancy, Celiac Disease at age 35 and Hashimoto's at 38.

My advice would be to go back to the Mayo and get retested for Celiac Disease. If you can't manage the time/expense, call Mayo and ask the doc there to set you up with a gastro near you.
If you're afraid of the diet - it's not that bad - there's tons of gluten free food in the grocery stores, some restaurants even have gluten free menus. I just finished a big bowl of GF mac n' cheese, it was delicious!

Last edited by AuntieLeela; 10-21-2009 at 09:20 PM.

Old 10-22-2009, 10:49 AM   #6
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beth67 HB User
Re: Wondering if I have a immune disorder

I totally agree with the last reply. You sound like you have celiacs. I have it. You say you went on a gluten free diet for two months. How strict were you. Did you exclude oats, rye and barley. Did you check every ingredient in everything you eat. Gluten can come in alot of forms with different names. Two months may not have been enough even if you were totally gluten free. The doctor that said you have celiacs, did he get this diagnosis from a blood test? If you retake the blood test be sure to be eating gluten for several days before it or it may come out negative. The problem is that the test isn't always accurate. It could come out negative and your really positive. Then the only way for an accurate diagnosis is with and endoscopy and biopsy. For this you also need to be eating gluten. A really good book to look at is by Dr. Greene called Celiac Disease. He runs the celiac research center at columbia University. A good gastroenterologist should be able to help. I called around and asked for one that has an interest in celiac disease. Unfortunately there are alot of doctors that don't take it seriously. For years the docs said I had fibromyalgia, then I was just depressed, they always wanted to brush off my symptoms. It was me that diagnosed myself and went to the doctor specifically asking for the test. If you get it make sure it's a good panel that tests for like five sensitivities. Sometimes I think fibromyalgia is labeled on people who doctors just can't figure out. I think it's a system breakdown from misdiagnosed problems. I think people with a fibro diagnosis should keep searching for what may be at the root of their problem. Another good book is by Dr. Titelbaum called From Fatigued To Fantastic. He discusses fibro and it's root causes. I don't think fibromyalgia is a disease in itself but a collection of problems that have gone wrong in the body and each one needs to be addressed. Hunt a little more before you resigned yourself to the fibromyalgia label and start down the medical "cure" path of pain killers and anti depressants. Good luck.


Old 10-23-2009, 10:56 AM   #7
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laura1611 HB User
Re: Wondering if I have a immune disorder

Thanks everyone for your advice.
I was tested for Crohn's at Mayo clinic and it was ruled out. Im sorry your daughter has to go through that I have heard about Crohn's and I am sure it is tough on her!

AuntieLeela- How soon did you see results for your celiacs? I was on the GF diet for two months and was very strict about it. I saw no improvements at all.

The newest thing that I am researching is my vasculitis. I was diagnosed in 2006 when a red mark on my face wouldnt go away after months. However, when the mark did go away I forgot about it. Now that I am looking into it I have found a type of vasculitis that fits my symptoms. Ive tried to see my doctor to talk to her about it but she is booked till the end of novemeber and they cant fit me in. Does anyone know anything about Behcet's syndrome or have it? Im trying to read into to see if this could be what i have. I just found it when I was researching but dont know enough about it.

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