Discussions By Condition: I cannot get a diagnosis.

Please Help w/ Very Weird Symptoms!!!!

Posted In: I cannot get a diagnosis. 35 Replies
  • Posted By: jifnif
  • March 22, 2007
  • 01:40 PM

Hi, I am 37 and in the past 2 or so years have begun getting hives when exercising or even hives when I get upset or nervous. This is NOT the only time I get symptoms. I also get extreme itching w/ NO hives when I am about 15 minutes into a run. I cannot exercise at all without getting hives that cover my entire neck, chest, around the breasts, forearms and they seem to travel down my stomache if I exercise for longer than 40minutes at a high intensity. I have seen my GP and I have seen an allergist. I do take zyrtec but it does not help. I also have asthma that I use an inhaler for. I have been diagnosed with cholinergic urticaria (hives) and exercise induced asphyxia (eia). I already know what I have. I want to know why and I want to stop masking it with a pill (which really doesnt anyway). I know these can be underlying for disease such as liver, thyroid and leukemia. What tests can I have done? What kind of doctor will know what tests to get so that I can find an answer? Please help. I will not settle for "this is just how it is".

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35 Replies:

  • I forgot to add that I have had my thyroid and my liver tested and some other tests that I am not really sure of. I think one was for rheumatoid arthritis and all results were negative.
    Anonymous 42789 Replies Flag this Response
  • Hi. You mentioned seeing an alergist, but not the tests s/he ordered. It is possible you have a food related allergy, or even one related to certain types of clothing materials, etc.My own personal experience with hives was a severe allergy to a medication I had been on for an entire YEAR before my body decided it wanted to react to it. The hives were so bad the doctor had to give me some kind of steroid injection to alleviate their severity. Sorry if I am not any help, but at the very least, consider a second opinion of a different allergy specialist if you think the first one might not have done a complete/adequate job in testing you.
    Anonymous 42789 Replies Flag this Response
  • I don't know if I am related to any foods. Not that I am aware of. But since reading a lot of posts I have decided to stay off of all wheat for a week or so to see if that may be it. I am praying it is something simple like that and not an underlying issue or something secondary to a serious illness. Thanks for the post. It is strange, I know it isnt anything topical. I can tell it is something happening internally that is the culprit.
    Anonymous 42789 Replies Flag this Response
  • I am 34, and I had a very bad bout that lasted for about 2 years from age 14-16. They started abruptly one day when I drank a strawberry shake and they proceeded to continue daily. I had to see my GP and allergists, take different medications, and of course never ate anything with a strawberry again while still getting very severe hives consisting of giant welts all over my body. I missed about 40 days of school. They then stopped suddenly. I was eventually told that they were stress/hormone related. Then, about one year ago (age 33), they started up again. This time, not as severe, but I continue to get them even now, especially around my period or times of stress. Usually I get them around my wrists, feet, or ankles. Sometimes I experience extreme bouts of itching with no hives. I was diagnosed with Hashimoto's thyroid 5 years ago after having a baby. I truly believe that the hives that I experience could be an autoimmune response. Although I think mine are autoimmune, different things can cause mine as well, such as exercise or pressure (like clothes that are too tight around the waist). See if your doctor did an ANA blood test also and maybe have your thyroid levels rechecked in a few months. Did you have any allergy tests done to rule out any food allergies (although yours sound exercise related from the heat/sweating)? Most likely you fall into the group I do and there is really nothing that can be done except the medication you take (and that's what I take too). One trick that helps me is ice packs--I use them to help the itching.
    flower30 2 Replies Flag this Response
  • Allergic and autoimmune responses are closely tied, and some doctors are beginning to realize this. Please look into a treatment called NAET. It if revolutionary in its approach to allergies and illness. I have had all the allergy testing done and they found nothing. This doesn't mean I have no allergies - quite the opposite! NAET is really working for me, and it has been shown to be extremely helpful for people with chronic hives, unexplained illnesses, chemical and food and even material/cloth sensitivities and much more. Please visit www.naet.com. When you read about it it just makes a lot of sense. See Dr. Devi Nambudripad's Say Goodbye to Illness for more info. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Could be from all the polyester in the clothing. It causes me breakouts of hives. Food allergies too.
    Anonymous 42789 Replies Flag this Response
  • Well, its not wheat...thank god. I had a hard time eating foods with no wheat. I am looking into NAET but I dont think my insurance covers it. I do believe its autoimmune. I was thinking of seeing an endocrinologist. just for a more in depth study. I am not sure where to go now. :confused:
    jifnif 24 Replies Flag this Response
  • I too have similar problem starting a year ago. A few months back after playing indoor soccer for 40 min the hives broke out and I kept playing with the itching. I ended up passing out in a restaurant. The blood pressure dropped to 60/40 when paramedic came. My doctor said I was lucky to be alive.The skin test in the allergy clinic says I am only allergic to dust mites, not even wheat. It's lucky I brought the food I took 2 hrs before the soccer game for testing. It turned out the culprit was the Japanese Udon noodle (made of Wheat Flour). The reaction was very strong. I was diagnosed Food Dependent Exercise Induced Anaphylaxis and now I carry my Epi Pen everyday.I recalled most of the past episodes of hives I had eaten pasta about an hour or two before the game.I do not eat for 4 to 5 hrs before the game now and never have hives during the game for a few months already. Well, I may eat a banana or pear a couple hrs before but definitely not noodle or pasta or bread. I eat after and have no problem even if I eat noodles.I take much less wheat products now and my digestive system is much better. I can feel it is getting worse when I take more wheat product.I also started NAET treatments last month. After the first treatment my shoulder pain and head ache was gone. My back acne has been reduced by about 50% so far. It appears the treatment is very good if you have pain due to stress. I will have the Wheat treatment done very soon. I will have further allergy test done in June. By then, I will know if my wheat/udon allergy is cleared by NAET.Do a Google search on "Food Dependent Exercise Induced Anaphlaxis" and "NAET" , you will find a lot of valuable information. That's what I did and how I found out this forum. Bring what you ate before exercise to your allergist for testing.Good Luck !
    Anonymous 42789 Replies Flag this Response
  • This is the closest I have ever seen anyone's symptoms comparible to my own!! The problem I have is that I don't eat prior to running. I run at 4am and dinner was at about 6pm the eve before. I stopped eating wheat for about a week to see if it helped. Actually, my hives weren't as extreme but I still had them. Is NAET covered by insurance??? Thanks so much for posting. I hope that mine is as simple to identify as you describe. :D
    jifnif 24 Replies Flag this Response
  • Unfortunately most insurance doesn't cover NAET, as it actually eliminates disease, and insurance only covers for treatment/maintenence of disease. Please try to find the money to try this - it is just the most amazing treatment I have found, and yes, you need to spend a bit more initially, but the rewards will be well worth it, and most follow up treatments should run about 70 us dollars. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • If your insurance covers Acupunture then it should cover NAET. I think most NAET practitioners can issue Acupunture treatment receipt.Your case seem to be more Exercise Induced than food related even though avoiding wheat lessen your symptom. Do you use toothpaste or mouth wash before you run ? I would stop using them and see if it makes a difference.ACUANN, how many NAET treatments did you get before you stopped ? Did you have to complete the Basic 15 before treating your specific allergy ?
    Anonymous 42789 Replies Flag this Response
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  • that is terrible!!! this is why i have insurance....it sounds like they want us to be sick....is naet something i can learn?? there has to be another alternative if insurance won't pay for this. :(
    jifnif 24 Replies Flag this Response
  • that is terrible!!! this is why i have insurance....it sounds like they want us to be sick....is naet something i can learn?? there has to be another alternative if insurance won't pay for this. :(Well- traditional medicine researchers don't like NAET. Because is cures you so you don't have to be sick forever.Last night in "60 Minutes" they talked about the Drug Company Scandal, how they charge the Medicaid system $1400 for a drug that might cost $400.Health Care is more like "Sick Care"- it is a business- there is nothing preventive about it. I am personally tired of hearing that "testing can save your life"- but they don't mind to tell you how not to get sick in the first place- like it was a mystery.Insurance is not useless, it is good to have it if you break a bone or if you are bleeding from your neck or something like that- but it won't cover issues of quality of life.You can't simply rely on your insurance provider to cover and resolve issues such as diabetes, high cholesterol, hypertension, body aches, gastric problems, allergies, asthma- etc.Most people who declare bankruptcy in US do it because they got overwhelmed with medical bills (and too sick to work to pay it off).Even people on disability have a hard time paying for their NAET- but once they do it they gain their life back! They become very productive and can go on to have the financial status that they really want.Have a Good Day!
    Eatafruit78 960 Replies Flag this Response
  • well, actually i just called a dr in my area that i found on naet.com and the price is better than i had expected. it was 125 for the consult and first treatment and 50 for each treatment thereafter. I pay 40 per visit w/ my allergist and at least 150 in rx a month. this is w/ insurance. it is worth a try. I will have to post after i give it a whirl. can someone who has had naet treatment give me some more indepth info? I really just want some first hand situations. thanks. :)
    jifnif 24 Replies Flag this Response
  • That is great, and can't wait to read how the treatment goes! I have only had two treatments, but already I have seen a HUGE change, the main being that I no longer need to use my inhaler, and can garden outside without feeling severe allergy symptoms. The pollen levels where I live have been the highest on record. My sleep improved as well. It seems like they are barely doing anything during the treatment, it is quick and completely painless. Afterwards they let you rest for 20 minutes. After my first treatment I had trouble sleeping that night, but the next night and afterwards slept great. They will tell you what to avoid for the 25 hours after a treatment, and this changes so you need to pay attention to their directions. Good luck to you and keep us posted.DOM
    acuann 3080 Replies Flag this Response
  • Acuann, what do you have to rest from?? I am just a lil bit skeptical. I read some reviews saying that it takes forever and thousands of dollars. I don't have that kinda time or money. The worst being there is no guarantee. I guess if you feel a bit of improvement right away that is a good sign. My husband is like "no way, its a gimmick". I just wonder if I am someone who can benefit. thanks:)
    jifnif 24 Replies Flag this Response
  • Acuann, what do you have to rest from?? I am just a lil bit skeptical. I read some reviews saying that it takes forever and thousands of dollars. I don't have that kinda time or money. The worst being there is no guarantee. I guess if you feel a bit of improvement right away that is a good sign. My husband is like "no way, its a gimmick". I just wonder if I am someone who can benefit. thanks:)Often times we reject systems that are a tad unorthodox just because we don't understand the mechanics behind it, or because the mechanics behind it are not widely accepted.For example- do you know how a microwave oven works (step by step)? perhaps no, but you know that it works because you can feel the food get hot and it is a widely accepted method to cook or warm food, even if you don't undestand it step by step.Same thing with naet, I can't give you an explanation on the hierarchy of the parasympatic nervous system and its role in the management of the immune system and how this is related to energy channels,and cellular chemistry, because I am not a doctor of medicine. All I can say is that NAET is coaching my body to use the food I eat so I get healthier everyday and is also coaching my body not to react with self injure in the presence of harmless substances.How does he know that the microwave oven is not a gimmick?Because the food is cooked and hot. Well, let me tell you, I had not been able to eat Dulce de Leche Ice Cream in 3 years because I used to have big rashes all over my face and arms.Last night I ate half a pint while watching tv. :D
    Eatafruit78 960 Replies Flag this Response
  • but its also the way you advertise naet like crazy.
    Anonymous 42789 Replies Flag this Response
  • Acuann, what do you have to rest from?? I am just a lil bit skeptical. I read some reviews saying that it takes forever and thousands of dollars. I don't have that kinda time or money. The worst being there is no guarantee. I guess if you feel a bit of improvement right away that is a good sign. My husband is like "no way, its a gimmick". I just wonder if I am someone who can benefit. thanks:) Yes, my husband was skeptical too, but Eatafruit is right. How many Western Pharmaceuticals are on the market and the mechanisms of action are "unknown"? Thousands. But people will blindly pop a pill. The fact is that many Western docs are doing NAET training. This is amazing, and shows how viable it really is. Just read up on it, especially the testimonials. There are no guarantees in anything. But the odds are certainly in your favor that you will feel MUCH better. I wish you luck and good health!DOM
    acuann 3080 Replies Flag this Response
  • Acuann, what do you have to rest from?? I am just a lil bit skeptical. I read some reviews saying that it takes forever and thousands of dollars. I don't have that kinda time or money. The worst being there is no guarantee. I guess if you feel a bit of improvement right away that is a good sign. My husband is like "no way, its a gimmick". I just wonder if I am someone who can benefit. thanks:)I was the one who posted the anaphylaxis experience. I was as skeptical as your husband before I took the first NAET treatment until I got unexpected hives on my forearms a month ago after using a prescribed mouthwash and ate a piece of bread (not even doing any exercise). I went to my family doctor and he could not do anything. I felt so disappointed and realized that there really was no cure in Western science for allergy. I kept researching NAET and found that you do not have to take any medication and it is essentially stimulating the ACU points on your spine. I thought all I had to loose were a few hundred dollars. If I did not try it I would keep thinking about it and keep thinking about trying....I picked an experienced NAET practitioner and tried my first treatment and as I said in my previous post my shoulder pain and head ache were gone. I have not been treated for Wheat yet after 10 treatments as the practitioner follows the basic 15 steps.I suggest you try a few treatments and check if you are feeling better during running. You can decide when to stop. It is worth spending a couple of hundred dollars and experience your own instead of keep researching and getting the same answers. There is no perfect answer.There is no guarantee. Hope you can benefit from it. Your symptom is similar to mine but at least you can test it after treatment. Mine is dangerous, I get anaphylaxis. I would test very carefully after my NAET treatments finish.
    Anonymous 42789 Replies Flag this Response
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