Discussions By Condition: I cannot get a diagnosis.

Do I give up?

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • February 27, 2007
  • 03:48 AM

Hi, I am a 38 yr old female. I have had 3 chldren, a hysterectomy and gall bladder surgery.

My problems began about 15 yrs ago. I began to just feel bad....aches, fever ect... It has progressed over the years to the following symptoms:

muscle pain
bone and joint pain
fever...all low grade
face turns very red around cheek area when I am at my worst
gastero trouble
dry skin
dry hair
brittle nails
severe back pain
joints dislocate on their own in ankles and jaw and sometimes shoulder
can only turn neck on one side
pain and numbness in fingers
trouble getting up from chairs
rapid weight gain
slow healing sores
skin rashes
swelling in fingers and elbows

I am sure there are some I forgot but you get the idea....I have been to many docs, I have hashimotos, fibro and some form of arthritis....

I have been tested for lupus, ra and ms and told it doesnt fit...I do have an abromally high ana test

Tylenol, advil , aleve ect...all stopped working as did vicodin.

I am fastly getting worse in the last few months to the point I trip over things because my legs don't want to work, or drop things because I have no grop sometimes. I need help...any ideas appreciated

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10 Replies:

  • quit MSG, eastern and Indian food.causes numbed swolen fingers, joint pain.get blod urin and spitum cultured looking for inffections.G
    Anonymous 42,789 Replies
    • February 27, 2007
    • 05:26 AM
    • 0
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  • Go see a chinese herbal practitioner.....they often know more that western doctors.......:) Good luck.
    Anonymous 42,789 Replies
    • February 27, 2007
    • 00:55 PM
    • 0
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  • Please don't give up. I am going through several of your symptoms and have been told crazy things from "It is in your head" to "you eat too much". DOctors hate to admit that they don't know everything. My husband is getting ready to take me to either The Cleveland Clinic, Johns Hopkins, or the Mayo Clinic. TO me, it sounds like you have Lupus. In Pittsburgh, there is the Lupus Center of Excellence located at Magee Women's hospital in oakland. It is worth a try. Their web address is www.lupuscenter.org. I hope this helps and wish you well. I will be praying for you.
    MrsKipilo 6 Replies
    • February 27, 2007
    • 03:29 PM
    • 0
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  • To the original poster: it sounds like you have a lot of autoimmune problems. Lyme disease can mimic lots of these - please research other posts on Lymes as I understand it is very difficult to diagnose. I agree that acupuncture and Oriental medicine would be very helpful for you. Find a good practitioner who also is a NCCAOM certified herbalist. Visit www.acufinder.com to find a practitioner near you. We diagnose disease patterns differently, and can offer a treatment based on your individual signs and symptoms. It really can offer you relief! Best wishes.DOM
    acuann 3,080 Replies
    • February 27, 2007
    • 04:22 PM
    • 0
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  • The dislocating joints make me think of ehlers danlos and hypermobility. There are a lot of other symptoms like the ones you are describing involved. Do you have other family members with dislocating joints? it is a genetic illness.
    Anonymous 42,789 Replies
    • February 27, 2007
    • 09:44 PM
    • 0
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  • Most of what you've got going on sounds like your Hashimoto's is not properly controlled (I have that, too, and it may require more than just Synthroid to control). Your endocrinologist should be testing for the full spectrum of thyroid hormones (T3, T4), not just TSH. If you're not seeing an endocrinologist for this, you should be, and it should be the best you can find.If that isn't it, your fibro is in a major flare-up. Nothing you can do to cure it, but you can do some stuff to alleviate the symptoms. Make sure you're getting proper sleep (trazodone works better than regular sleep meds to get your mind into the proper level of sleep). You should have something for the pain (I take Relafen, which is an anti-inflammatory that won't eat your stomach). Very gentle exercise can actually help (swimming is best, but slow walking on a LEVEL surface will also help).I agree about the Ehlers-Danlos (which I also have) for the dislocating joints. Not much that can be done about that, either, that I know of, but it would give you some reassurance (an answer) and possibly some more measures that can help relieve your pain (and avoid additional damage).Hang in there. A lot of us know how you feel. We're with you.
    Anonymous 42,789 Replies Flag this Response
  • So much of this stuff goes together. I have murky bloodwork never complete for Lupus. But I have lots of symptoms that you have. I also have hypothyroid and hypermobility and Fibromyalgia. My theory is that there are a few rhuematological diseases that are yet to be classified. Another possiblity is that some of us are slow to progress in to classic disease patterns, yet we suffer from endless lists of symptoms! Right now they think I have RA! It never ends. See if they will check you complements ( I have inherited low c-4, that is consistent with Lupus) and give you some prednisone, if you get better with that it will tell them something. Keep talking to the dr's ask questions! It stinks, but don't give up. Betts
    Anonymous 42,789 Replies Flag this Response
  • My daughter has a lot of your symptoms, and we're just finally narrowing down the problem to some kind of food allergy. She tested very high for IgE, but neg for typical allergies - so she is allergic to something - we just dont know what. She has hashimosto's, fibromyalgia, hypermobility. Her main complaints are joint pain and stomach pain. Ab CT showed problems in her jejunum. Video pill showed erosions. I suspected Celiac, but so far she is testing neg on wheat allergy. i plan on getting her completely tested thru enterolabs. I also just arranged for IgG testing thru an internet lab. We shall see.
    Anonymous 42,789 Replies Flag this Response
  • Dear friend, Please don't give up.It sounds like some sort of autoimmune disorder, Lyme and Lupus can not be ruled out as some of your specific symptoms lean toward these two disorders.Please ask your doctor to run one more "systematic blood work" on you.Ask him to check for rheumatoid factors as well as anti nuclear test as well.Serious consider getting your self tested through an actual Lyme disease centre who looks for the bacteria not just the antibody protein.Best of luck to you
    Anonymous 42,789 Replies Flag this Response
  • Please do not listen to anything Shula or Acuann tell you. My sister just passed away because Shula and Acuann told her that her doctor was wrong and she did not have a serious condition. Acuann even told her to get acupuncture to get healed. These people are going to be investigated for practicing medicine without a license. Shula and Acuann are specifically wanted in connection with my sisters homocide. Thats right homocide. If she would have listened to her doctor instead of these internet quacks she would still be here today. Rest assured I will do everything in my power to put these two behind bars and shut this website down for good.
    Anonymous 42,789 Replies Flag this Response
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