Discussions By Condition: I cannot get a diagnosis.

"Idiopathic" means "they don't know"....

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: twoleoz
  • April 4, 2010
  • 04:23 AM

For 16 years, I have suffered with a joint disorder. I can tell you a very great deal about what it isn't. It is not lupus, gout, RA, MS, any sort of disease, defect, or injury of any of the joints themselves. What 12 doctors in 5 specialties and more testing than my credit rating could ever hope to handle have been able to tell me is "we don't know".
What happens is this; I come semi-awake in the middle of the night with a sore knee or elbow or ankle. I think "must be in the wrong sleeping position", adjust and go back to sleep. I wake up with the affected joint 6 to 10 times the size it is supposed to be. Within four hours of onset, the pain hits. Know how your doctor asks you to describe the pain on a scale of 1 to 10? I'm no wimp; I did 15 hours of labor without so much as a Tylenol. There is no scale to describe this pain.
The big problem here is the unpredictability. I don't know when I'm going to have an outbreak till I have one. I have noticed a marked association with my menstrual cycle, but that doesn't mean I'm going to have an outbreak every month, or at the same point in my cycle each time I do. When I do, there is no way of knowing if it will attack the large joint in my thumb or go after a knee. The outbreak may last three days, it may last ten. There is no way to know. It may respond to Ibuprofen, or I may wind up resorting to a dangerous cocktail of Vicodin and Valium just to get two hours' sleep.
The other big problem here is the exhaustion. From the first symptom, I am completely drained. I could happily sleep 14 hours straight....if the pain would let me, that is. I become horribly depressed, and often cry for hours in frustration from the combined blows of exhaustion, depression, and pain.
So, what have the doctors been able to tell me? Well, it is definitely an autoimmune disorder. For no reason apparent to them, my body ceases to recognize one of its large joints as a native and instead attacks it as an invader. What is being attacked is the soft tissue of the joint. This is particularly nasty when I have a severe outbreak in my shoulder or hip; the extreme swelling in the soft tissue forces the ball from the joint, causing dislocation.
This entire situation has caused me to have a deep distrust for the entire medical community. In my experience, when a doctor is "stumped", for lack of a better word, they don't get all curious and creative like you see on "House". Rather, their God-complex egos are bruised and they wish the offender to be away from them as soon as possible. I'm told "I don't know, you probably just need therapy, could be stress", and either dismissed or sent to another doctor who will tell me the same thing. And every day I wonder when the next outbreak will hit.
If anyone who sees this has any sound ideas (please, I'm VERY sensitive to the whole fibromyalgia argument, don't try to make it with me) on what I'm dealing with or who might legitimately be able to help, I would appreciate some direction. Thank you for your time.

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6 Replies:

  • Do you have any other problems such as diarrhea, abdominal pain, fever, rash or have had?How old are you?Did you travel somewhere?
    Anonymous 42789 Replies Flag this Response
  • Have any of the doctors ever taken any of the fluiod from the joint to test it? How about joint x-rays to check the dmg? I know you said you don't have any disease as such but since I didn't see you mention it and it causes no symptoms inbetween attacks. I did see you mention gout but not sure if you been tested for this in particular.Pseudogouthttp://adam.about.com/encyclopedia/infectiousdiseases/Pseudogout.htmSymptoms •Attacks of joint pain and fluid buildup in the joint, leading to joint swelling•Chronic (long-term) arthritis•No symptoms between attacksExams and Tests •An examination of joint fluid would show white blood cells and calcium pyrophosphate crystals.•Joint x-rays may show joint damage, calcification of cartilage, and calcium deposits in joint spaces.
    Anonymous 42789 Replies Flag this Response
  • Do you have any other problems such as diarrhea, abdominal pain, fever, rash or have had?How old are you?Did you travel somewhere?Three months before the first onset of symptoms, I spent 10 days in Minnesota. I am a lifelong resident of Kansas. The diarrhea and abdominal pain are usually present with or without an outbreak, as they nearly always accompany my menstrual cycle. I'm 40 in August, but was only 24 when I had the first outbreak.
    twoleoz 2 Replies Flag this Response
  • Have any of the doctors ever taken any of the fluiod from the joint to test it? How about joint x-rays to check the dmg? I know you said you don't have any disease as such but since I didn't see you mention it and it causes no symptoms inbetween attacks. I did see you mention gout but not sure if you been tested for this in particular.Pseudogouthttp://adam.about.com/encyclopedia/infectiousdiseases/Pseudogout.htmSymptoms •Attacks of joint pain and fluid buildup in the joint, leading to joint swelling•Chronic (long-term) arthritis•No symptoms between attacksExams and Tests •An examination of joint fluid would show white blood cells and calcium pyrophosphate crystals.•Joint x-rays may show joint damage, calcification of cartilage, and calcium deposits in joint spaces.This information is interesting. They did draw fluid from one of my knees about 13 years ago, checking for gout, said there were no gout crystals present. X-rays and CT's since the onset of symptoms have shown that the favored joints, largely my knees and ankles, have been permanently damaged, but the nature and extent of that damage have not been explained to me.
    twoleoz 2 Replies Flag this Response
  • Interesting, have you had a blood test to test for uric acid? If you have been checked for the presence of crystals then it was probably for Pseudogout. I noticed you said your doctors believe it is an auto-immune disorder, guessing due to the fact of thier bewilderment of the problem? Anyhow here are several things along the lines of gout you may feel like looking at.Some of them you may have already been tested for.Some Diseases with Symptoms Similar to Gout Disease Specific Subtypes Osteoarthritis Infectious Arthritis Lyme disease, septic arthritis, mycobacterial and fungal arthritis, viral arthritis, osteomyelitis Postinfectious or Reactive Arthritis Reiter syndrome (a disorder characterized by arthritis and inflammation in the eye and urinary tract), rheumatic fever, inflammatory bowel disease Pseudogout Rheumatic Autoimmune Diseases Rheumatoid arthritis, systemic vasculitis, systemic lupus erythematosus, scleroderma, Still's disease (also called juvenile rheumatoid arthritis) Fibromyalgia Other Diseases Chronic fatigue syndrome, hepatitis C, familial Mediterranean fever, cancers, AIDS, leukemia, bunions, Whipple's disease, dermatomyositis, Behcet's disease, Henoch-Schonlein purpura, Kawasaki's disease, erythema nodosum, erythema multiforme, pyoderma gangrenosum, pustular psoriasis
    Anonymous 42789 Replies Flag this Response
  • Hmmmmm you might want to try this for some relief and then again you may not want to just incase it effects a doctor finding an underlying cause of your problems. Anyhow check out castor oil as you may find it somewhat beneficial in easing some of your pain.
    Anonymous 42789 Replies Flag this Response
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