Discussions By Condition: I cannot get a diagnosis.

Escalating symptoms and no answers

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Maple Leaf
  • April 12, 2007
  • 05:59 PM

I'm 47. Since December 2006, I've been to several doctors describing some rather bizarre and seemingly unrelated symptoms that won't stop.

1. Started with a large hive on my left hand, followed by joint pain
2. The hive keeps coming and going IN THE SAME PLACE, on my left hand
3. Swelling throughout the top of my hand won't disappear
4. Joint pain goes up in my wrist and fingers
5. Two Lupus tests - both negative, treated with Relefin
6. Rash all over body (they thought this was Relefin reaction)
7. Rash now faded, but general dotty type redness in face, neck, and chest
8. Small pockets (like hives but they don't itch) of swelling appearing on the top of both hands and now the tops of my feet near my ankles
9. Achey feeling in the bones wherever these pockets of swelling appear
10. Petechiae started appearing all over (never had this before). Saw my GP who agreed it was petechiae and ran bloodtests -- all normal. Dermetolgist said it was my age (this guy was WORTHLESS)
11. Rheumetologist was very good, but couldn't help -- she ran about 20 different bloodtests -- all normal
12. But I think the worst part is the skin pain! It feels like someone has dragged me along the highway. My skin burns like sunburn, but feels scraped, and this occurs in patches all over my body. Most effected is the back of my thighs, tops of my thighs, around my waist, and under my arms (down the backs of them).
13. The swellings, joint pain, and skin pain all seem to occur more during times of stress, but can pop out at any time.
14. Oh, and last but not least, weight gain. I've gained about twenty-thirty pounds since December and appear very swollen and puffy, especially in my face, hands, feet, and mid-section.

Well, I think that's it. This is making my life miserable and there are so many possibilities, I don't know where to go or what type of doctor to see. Please help!

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9 Replies:

  • I'm sorry about your symptoms, but I would have to suggest that you go and see a better dermatologist, and possible have some more bloodtests run, if you've even had any. Maybe also get a CT scan or MRI of the body, you never know what you could find.
    Anonymous 42,789 Replies Flag this Response
  • Um, sounds like you have been bit by a spider or something. The brown recluse can do anything from kill you to just leave a big bite mark. The poison they inject runs through your body and eventually tries to come out through the skin. My ex-boss had to have her legs scrapped to get the poison out. its nasty and you can lose limbs by it causing parts of your body to die off. But that is just the brown recluse, it could be something else that bit you and this is your allergic reaction. They dont routinely run spider/insect bite tests when they do bloodwork, so you need to have that looked at. A lot of people get bit in their sleep. Its nice and dark in the room, your body is nice and warm.... great place for a spider or insect to hang out. Do a search online for pictures of spider/insect bites, see if any resemble yours. They all look different so it may be while so check for Brown Recluse first. Also check WebMD for the symptoms of spider/insect bites. This sounds classic. Have you had a tetanus shot in the last 7 years? Were your white blood cells elevated in any bloodwork?
    crabbycosmo 21 Replies Flag this Response
  • The spider bite thing has been checked out and ruled out because the whelt or hive appears in other places and keeps re-appearing. The original whelt also began so long ago (four months) and no actual skin eruptions like the brown recluse causes. Everything skin-wise feels more like over-sensitive nerve endings, but I never developed any outward signs like shingles... although it really feels like those types of symptoms. Thanks for the suggestion, though. I really believe the whelt thing is what is throwing everyone off. The whelt only appears on the top of my hands near my wrist and on the tops of my feet near my ankles. All of them occur near a very big joint.
    Maple Leaf 4 Replies Flag this Response
  • Hi Maple Leaf,Fascinating. Every time I'd think of something, the next thing you wrote shot down that idea. First I thought Lupus. Next post I thought shingles. :rolleyes:So...I have questions:What has your temperature been doing? High, low, variable?How are your bowel movements?How is your sleep?Have you moved recently?Have you been checked for parasites?What do your blood counts show?Did you have chicken pox as a child? Any other childhood diseases?Have you had tests for kidney and liver function?Were there any results on your blood tests that were within normal, but in the high or low end of the range?Has your thyroid been checked?Do you take any meds (prescribed, over the counter, supplements)?Here's my guess: you have two things happening, and they are working off of each other, and making it hard to zero in on one thing. Also, somehow, in working together, you are ending up with unusual symptomology all the way around.If you feel like it, and want me to take a shot at it helping figure out what this might be, please answer as many of the questions above as you can. I'll take a look at it tomorrow (Saturday).Looking forward to reading your answers.Best,Shula
    Anonymous 42,789 Replies Flag this Response
  • Sorry, didn't see this until this morning. Now that I'm posting, I can't see the questions, so I'll try to go from memory. Temperature appears normal -- once when the symptoms were very flulike it was 100.7. Chicken pox = yes, no issues Blood tests all normal Thyroid = checked, but interestingly enough, my sister had thyroid cancer and my daughter has hypothroidism, but they think it's caused by the Lithium she takes for Bipolar disorder. Still, everything I read, says this is passed through the mother's genes, and if someone in the family has the antibodies for Hypothroidism (and my daughter does), all females of the family should be checked. Liver and Kidneys = all supposedly checked, but in the past I have had a diagnosis of high ALT (liver enzymes), so high in fact, that the Red Cross will not allow me to give blood... ever. They are the ones that found it when I tried to give blood once in the 90's. I had all the Hepetitis testing, though, and everything now reports as normal. Sleep is okay, but the joint pain and swelling are really, really bad at night and whenever I do awaken, those are the first things I notice. Very difficult to get out of bed some mornings. We moved into our house in 2004 (December). We have electric heating supplemented by a pellet stove. We've investigated this on our own with a carbon monoxide tester -- no issues according to that. We have two cats and two dogs. The last dog is new to the scenario, a Golden Retriever. We've had him since April, and no issues with all of this showed up until December. We are trying to exhaust everything else before we turn to allergies because they are so hard to track down. Also, Benedryl and Zertek have been subscribed and haven't made any appreciable difference. Medications and diet: No perscriptions. Am currently trying the following supplements - Vitamin C, Multi-Vitamin, Omega 3, Zantac (the Rheumatologist recommended this), and I just got a supplement for joint pain containing Glucosemine yesterday. When the pain really gets bad during the day, I might take Aleve, Advil, or Bayer. At night occasionally I'll take Benedryl to help me sleep if it's keeping me awake. I try to limit all those. I've also tried to limit my intake of diet drinks with Splenda or Aspertame and drink mostly water. Can't give up the coffee though, but I only have one cup a day. Am also trying to limit nuts, cheese, eggs... food allergies are also another area that will be hard to pin down. But as far as allergies go, I'm not having throat tightening, itchy eyes or nose or runny nose. I have allergies, so I know all the spring symptoms. The swellings I have don't itch!!! And the skin stuff is pain, not itching. Family History: Mother and Father - both had cancer (kidney), mother - high blood pressure and three strokes recently, father (deceased) had migraines and vertigo -- died of pneumonia and complications from emphasema. Sister (tyroid cancer, hypothyroidism), another sister (osteoarthritis). Daughter #1 (bladdar ulcers), Daughter #2 (Bipolar Disorder, Hypothroidism). Guess that's it... I'm going to my GP today and not going to give up until he gives me a list of specialists to see and in what order... I know they have lots of other patients, but I'm not fixed yet and everything is getting worse, so just because they can't figure it out it doesn't mean I can just live with it. I want to know what doctor I can see who works on strange diagnoses and can be put in charge of my case. If you've ever seen "House" on Fox, you'll know what I mean. I need a Dr. House!!! Thanks for trying. I'll keep in touch.
    Maple Leaf 4 Replies Flag this Response
  • I saw my GP yesterday, and after laughingly telling me that I make him feel stupid (because he can't figure me out) he said that I'm on the right track with the follow-up with the Rheumatologist (Friday). He informed me that there are many Rheumatology disorders that take a while to truly diagnose, as they are evolving -- and that the swelling in my wrist (and hand) are "dramatic", and should help lead to a diagnosis. After that, the Dermatologist would be his suggestion, then Endocrinologist. The joint pain, or rather pain deep in my hand and deep in my fingers, are really making it hard to do my job -- I'm an Admin. Asst. and type for a living.
    Maple Leaf 4 Replies Flag this Response
  • Maple Leaf -- I really don't have a clue about this, but I was also going to suggest an endocrinologist. Although most of your symptoms are on your skin, you also have bone and joint pain, and swelling and weight gain, and to me those suggest something systemic. Endocrinologists also work with autoimmune disorders; I know you've already tested negative for lupus, but this could be some other autoimmune problem.Do keep up with your rheumatologist too. I've had some rheumatology issues (osteoarthritis), and I agree with your GP that those can take time to diagnose.Maybe some other substances or therapies could give you at least some temporary relief Cortisone, either injected or topically in a cream, is my first thought. Maybe soaking your hands in warm water with epsom salts for the swelling? Or diuretics? If any of your swelling and weight gain is from water retention, those could help.My best wishes and prayers,Chris
    AmateurHistorian 74 Replies Flag this Response
  • there are a few rheumatic disorders that sometimes involve skin rash. be sure and ask about reiter's syndrome-- and google it, you will find images of hands covered in rash.
    buckarooster 2 Replies Flag this Response
  • go to www.ahummingbirdsguide.com you symptoms are there look at the entire list...good luck
    mommy cat 1,654 Replies Flag this Response
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