Discussions By Condition: I cannot get a diagnosis.

No answers for over a year... HELP!

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: nicoizzo33
  • December 1, 2008
  • 07:28 PM

I have been experiencing an ongoing leg pain problem for ever a year now. It is extremely painful, and I need help!!!

This started in August 2007. I had not been doing anything extreme that would bring on any kind of pain at all, however, on a Friday morning I had pain in my right thigh. It felt like muscle soreness, so I brushed it off. But by Sunday, it had not gone away and was getting significantly worse, and had also moved down into my right calf. Thigh did not hurt at all anymore. It was very hard to walk, I had to limp. When I tried to just forget the pain and walk normal.... it was like my leg had "forgotten" how to walk! I went to the ER, where I got an ultrasound on both legs, top to bottom, that came up clear. No answers.

Since then, the same thing has flared up in my right calf, in the same exact place every time, about once or twice a month since then. Each flare up lasting from 3 - 4 days in length.

Symptoms:

-Pain in right calf - ranges from blunt pain to "stabbing" pain. very extreme.

-Muscle spasms in the right calf area.... very painful.


I kept a diary for several months, and found nothing that seemed to cause the flare ups. They are so random.

Tests:

-MRI - brain, lumbar spine, leg.... all came up normal.

-A ton of blood tests... the only thing found was an elevated ANA level, but I was tested more for Lupus, and was told that is not the problem.

-Numerous neurological tests that showed no nerve damage in the leg.

.... I'm very confused, and nobody has been able to help me. I have seem a Neurologist, Rheumatologist, my Primary Care Physician, and numerous other doctors.

This last month, I developed a new problem. I'm not sure if it is related to the leg issue... On the palms of both hands, I get this white wrinkling stuff that is very strange. It flares up when my hands come in contact with water for only a minute or two. It starts to hurt with a sort of burning sensation. After about 30-45 min. after water exposure, it goes away almost completely. Last night (3 weeks after onset) I got red spots all over my palms that were painful. Sort of a blister-like pain. They spots have gone away now, but I still have the pain. I got a biopsy for the white stuff a few weeks ago, but the Dermatologist did not agree with the results, and said he has only seen cases like it a couple of times. This is only happening on my palms, nowhere else. No answers, again.

HELP!

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12 Replies:

  • The symptoms at the palms could be carpal tunel syndrom, but the billateral one is rare.The pain in the lower leg is strange:1) the lumbar-MRI ruled out nerve-root compression, which was the most probable cause2) blood CPK-levels and EMG, if they were normal, make myopathy less likely3) make sure its not a vascular problem --> Sonograph of the vessels of lower limbs.If there is ANY muscle weakeness during the episode, it would helpful to locate the lession.If the palm-problem relates with this is yet too soon to tell.
    tsoukase 18 Replies
    • December 1, 2008
    • 10:44 PM
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  • Although I don't have an answer for you, here's info on what an elevated ANA means: http://www.labtestsonline.org/understanding/analytes/ana/test.html
    aquila 1263 Replies
    • December 2, 2008
    • 09:02 PM
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  • I was tested for Lyme disease, and the results were negative. I do want to explore the elevated ANA test results more... but it seems as though nobody thinks anything is wrong. The flare ups seem to be getting worse as well. I just had a 3 day flare up last week, and today I am feeling it again. I'm not sure what else I can do or how I can make my voice heard..... :confused:
    nicoizzo33 5 Replies
    • December 3, 2008
    • 02:31 AM
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  • As long as you know it is not a DVT:For the leg pain, I would have to say that it is scaitica. Even sitting down for long periods of time or walking for a while can trigger this pain. It can start in your back and go all the way down your leg. A year later, it is quite possible, that you only feel it down by your calf.I would look into sciatica personally, however I am not a doctor.http://www.emedicinehealth.com/sciatica/page2_em.htm and for the hands it is either a dermatitis or a fungus. sounds more like dermatitishere is a great website: http://www.merck.com/mmhe/sec18/ch203/ch203c.html next time your hands start to experience that problem, see if it is happening with bottled water or tap water. Did the county start putting something new or more of something in your water recently? I am curious if the elevated ANA means you have some sort of infection in your leg or if it truly is a fungus on your hands...or both...or neither have you been tested for mrsa?
    alsonotadoctor 12 Replies
    • December 3, 2008
    • 04:02 AM
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  • Positive ANAs do not tell many. How elevated were they? Only more than 1/160 may tell something but as a specialist had ruled out an auto-immune disease the only thing you can do is to re-test them every 3-6-12(?) months.Did you do the sonograph of the vessels of the lower limbs?
    tsoukase 18 Replies
    • December 3, 2008
    • 08:44 AM
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  • My ANA screen shows a 1:320 result. Yeah, I have gotten 2 sonographs on my legs. Both came up clear, so I know the blood vessels are ok. The only other things I am seeing in my lab results that are off is:Bilirubin total is a little highLymphocytes is a little high.... but I have no idea if those mean anything. Probably don't. Also, as a follow up test to the ANA screening, I was tested for c-ANCA and p-ANCA... but came up negative. I'm not sure if maybe there is something else to be tested for as a follow up to the high ANA....?Thank you for your help!
    nicoizzo33 5 Replies
    • December 3, 2008
    • 04:48 PM
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  • ANA 1/320 are still low to highly suggest any auto-immune disease. It is likely that they are irrelevant. So are the other high values (bili and lympho) at present.So we are back at the beginning. I would suggest:1) you make an EMG at the calf while the pain/spasm is present, as of better quality as possible2) may be it goes a little far but a cervical spine MRI can come next3) avoid unneccesary dugs/injections and complex physiotherapiesIn any case it is NOT a serious illness.
    tsoukase 18 Replies
    • December 3, 2008
    • 05:32 PM
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  • Yeah, I know it's nothing too serious. I guess I'll just have to try and get a test done while the pain is happening. Thank you for all your help! :)
    nicoizzo33 5 Replies
    • December 3, 2008
    • 05:58 PM
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  • The term your doctor should think about is "hand in the bucket sign." There are a few conditions out there that have this symptom. I have no idea which one you have. One form is rare and is hereditary.
    aquila 1263 Replies
    • December 3, 2008
    • 06:27 PM
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  • I got a diagnosis from my Dermatologist regarding my hand symoptoms! It's called Aquagenic Syringeal Keratoderma... kind of weird. It's a very rare condition, I guess. He said there are only 12 documented cases of it. I'm starting treatment, so hopefully it will resolve soon. So happy I got an answer!Now the only problem is my leg problem.... but I'm going to keep researching! :cool:
    nicoizzo33 5 Replies
    • December 5, 2008
    • 03:19 AM
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  • As a follow-up to a previous posting.... I have not been tested for MRSA, however, I don't think that is the issue. I have been tested for a few infections, and the only thing that came up was that I have been exposed to the pneumonia virus previously. No big deal, I'm sure. Does anyone know of any other tests besides Lupus that can be done as a follow-up on my elevated ANA result? I do have a family history of autoimmune diseases, which is why I'm so curious. My mother has Multiple Sclerosis, my aunt has Lupus, and my grandmother has Parkinson's disease. All are on my maternal side.
    nicoizzo33 5 Replies
    • December 5, 2008
    • 03:24 AM
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  • Hi there,Aquagenic Syringeal Keratoderma I have the same thing. I have diagnosed myself and went to doctor yesterday, who had never seen it. She took a photograph of my hands after putting them in water for a few minutes.I am waiting on blood test results. What was your treatment??I read about aluminium chloride (ingredient in anti-perspirant) It is very frustrating.:eek: I got a diagnosis from my Dermatologist regarding my hand symoptoms! It's called Aquagenic Syringeal Keratoderma... kind of weird. It's a very rare condition, I guess. He said there are only 12 documented cases of it. I'm starting treatment, so hopefully it will resolve soon. So happy I got an answer! Now the only problem is my leg problem.... but I'm going to keep researching! :cool:
    Anonymous 42789 Replies
    • December 16, 2008
    • 11:38 PM
    • 0
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