Discussions By Condition: I cannot get a diagnosis.

Please help, my Mom has been to a ton of unknowing doctors

Posted In: I cannot get a diagnosis. 28 Replies
  • Posted By: wantsanswers
  • December 18, 2008
  • 04:33 AM

Hi, within the recent year or so, my mom has developed what appears to be a lump on her left elbow. The lump varies in size, from day to day. Also, it sends tingling sensations down her arm, sometimes pains her, and sometimes developes a light red skin rash. We have been to many doctors, and none know the reason. The X-Rays come up clean every time. I'm not sure if this pertains, but she is 49, has had Von Willebrans(an anemia disorder) her entire life, she gets migraines frequently, and has been on birth control for 2 years to help retain her iron levels for the Von Willebran's. Her general physician agrees there is a problem, but lacks the specialization to send her for the necessary tests without the referral of another doctor. Please help, so we can finally know what's wrong, and fix it. thank you so much.

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28 Replies:

  • A biopsy is in order.:)
    richard wayne2b 1232 Replies
    • December 18, 2008
    • 05:53 PM
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  • thank you. i thought the same thing, but we are unsure what kind of doctor to take her to in order to get a referral. My physician examined her arm, and suggested a surgeon, but we are unsure. all the prior doctors she has been to have been unwilling to help us, mostly bc they are afraid to treat a person with a severe anemic problem, especially when it has to do with tests that require blood plasma treatments. any suggestions?
    wantsanswers 22 Replies
    • December 18, 2008
    • 10:53 PM
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  • A general surgeon should know what to do.:)
    richard wayne2b 1232 Replies
    • December 18, 2008
    • 11:18 PM
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  • Why is she so anemic?Von Willebrands disease is a clotting disorder and usually is not associated with anemia.If they're afraid she'll hemorrhage,all they have to do is to give her cryoprecipitate or fresh frozen plasma before the biopsy.:)
    richard wayne2b 1232 Replies
    • December 18, 2008
    • 11:32 PM
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  • Personally, I'm not sure why she is so anemic, and I don't believe the doctors know, either. She was going to a doctor supposed to be the best in the Von Willebrans field, however, the doctor told my mom that she had the rarest case she had ever seen. Apparently, only one other like it on the eastern seaboard. Unfortunately, that doctor moved offices, and when we located her, she was no longer willing to help, stating that there is no way she could know what is wrong. My mom has recently gone to an arthritis specialist, to see if she could help us narrow down the problem, but she did not know either. The arthritis doctor prescribed Lyrica, hoping it was a neuroligical problem. The doctor said the Lyrica has been tested to reduce swelling as well as the pain in the case of neurolically-caused swelling. She is finishing up some anti-biotics, and is set to start the Lyrica come January. The only other option, the doctor said, was doing a bone biopsy. The general physician recommended a lymph-node biopsy, testing for infection since she had a breast surgery to remove a begnine tumor a number of years prior. He thought it could have effected her arm like that. However, i am still unsure about the rash that mysteriously develops on BOTH arms. The other arm, however, is not swollen. Too, her legs swell severely, numerous inches in circumference. Her circulation has been tested, and is fine. Also, she cannot wear those stockings that help that because her legs swell so bad she cannot fit in them sometimes, to the point of pain. However, I do know that she was tested for Lyme's and it was negative. As i said, the Von Willebrans stemmed from when she hemmoraged very very young. I know this is a very mysterious case, and i really appreciate all of your input, as i worry a great deal about her.
    wantsanswers 22 Replies
    • December 19, 2008
    • 01:20 AM
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  • She apparently has one of the 2 cases of this type of von willebrans on the eastern seaboard. The doctor she was going to for this has stopped examining her, as she no longer knows what to do. She hemmoraged as very very young, during a dental procedure. Too, she needed a full blood transfusion as an infant. further than that, i'm afraid, i am unsure. i just know doctors are resistant to treatments that involve an anemic risk, and often blow us off. She has been to the arthritis doctor, recently, and she is testing to see if its swelling due to neurological problems by starting her on Lyrica come January. The only other suggestion was a bone marrow biopsy to see why the blood doesn't function correctly. My Physician suggested a lymph node biopsy in her arm, bc she had a breast surgery to remove a begnine tumor a few years back, to see if anything is infected. Again, the doctors are unsure where to send her, and the doctors we have been to are unwilling to test.i really appreciate your input, as i worry about her alot. Does anyone think the Lyrica is a proper treatment? or is it better to biopsy first? thank you.
    wantsanswers 22 Replies
    • December 19, 2008
    • 01:34 AM
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  • I don't understand why she is to take Lyrica.It's for diabetic peripheral neuropathy,fibromyalgia,post-herpetic neuralgia, and partial adult seizures,not anything you've told me about.:)
    richard wayne2b 1232 Replies
    • December 19, 2008
    • 02:10 AM
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  • i feel the same way. The arthritis doctor said that lyrica is normally used to treat pain due to neurological diseases. however, she said it may be possible that it could act as an anti-inflammatory drug if the problem is neurological. I'm personally not sure. is this a safe approach by the doctor?
    wantsanswers 22 Replies
    • December 19, 2008
    • 02:24 AM
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  • i feel the same way. The arthritis doctor said that lyrica is normally used to treat pain due to neurological diseases. however, she said it may be possible that it could act as an anti-inflammatory drug if the problem is neurological. I'm personally not sure. is this a safe approach by the doctor? I am not a fan of lyrica, and would look this drug up on www.drugs.com to be aware of all of the many possible side effects of this med. Docs seem to love to prescribe Lyrica when they have no idea what else to do:(. Why on earth is your mom taking birth control pills to help with her iron levels?!? BC pills can cause blood clots and a host of other potentially dangerous side effects. Please look into a more holistic approach to helping your mom's condition. Acupuncture would be very helpful. Did they do an ultrasound to rule out a blood clot? Do you know what her B12 levels are? B12 deficiency can cause migraines, and neurological disorders. Often goes hand in hand with iron deficiency anemia. Best wishesDOM
    acuann 3080 Replies
    • December 19, 2008
    • 03:22 AM
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  • Sounds like ur going in the right direction, i just had a biopsy on my mouth and a oral surgeon done that.
    c.harris 3 Replies
    • December 19, 2008
    • 02:02 PM
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  • First,I forgot to mention that birth control pills can cause migraine headaches.Next,what ''swelling'' is the Lyrica for?It's a pretty safe drug,but I just don't understand the reason for it.
    richard wayne2b 1232 Replies
    • December 19, 2008
    • 02:45 PM
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  • In reply to your question,I would do a biopsy first,not start Lyrica.:)
    richard wayne2b 1232 Replies
    • December 19, 2008
    • 02:53 PM
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  • The lyrica was prescribed for the swollen lump in her arm. And the first thing the doctors did was rule out a clot bc of the birth control. the birth control are prescribed, however, bc she hemorrhaged when she had her periods. The only two options to stop this were: birth control, or a uterine destruction surgery. However, they wouldn't do a hysterectemy, nor did they suggest following through with the other surgery bc of the beeding factors. I found out some more info on the Von Willebrans: she has two different types at the same time-type 1 and type 2. Too, she has thrombopenia and leukopenia problems. What type of doctor could we go to in order to find out more about a biopsy? would a general surgeon in the area work?
    wantsanswers 22 Replies
    • December 19, 2008
    • 06:16 PM
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  • Yes,a general surgeon should suffice.:)
    richard wayne2b 1232 Replies
    • December 20, 2008
    • 01:22 AM
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  • A hematologist is the correct doctor to go to.:)
    richard wayne2b 1232 Replies
    • December 21, 2008
    • 02:11 PM
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  • Lyrica will be useless for the ''lump'' in her arm.:)
    richard wayne2b 1232 Replies
    • December 21, 2008
    • 02:25 PM
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  • Lyrica will be useless for the ''lump'' in her arm.:) Absolutely worthless!DOM
    acuann 3080 Replies
    • December 22, 2008
    • 03:05 AM
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  • Thank you for all of your ideas, we really appreciate it. My mom has been to about 3 or 4 hematologists in the past few years, however, none of them know how to treat the Von Willebrans. Her current Hematologist doesn't want to biopsy because he said "no doctor has enough medical insurance to treat you, and keep their license." Sadly, i'm not sure where to go from here. We plan on looking up a general surgeon in the area after the holidays, but we are unsure if he will be the correct doctor to treat the lump, while taking into consideration her Von Willebrans. Too, the rash appearing on the lump, seems to also appear on the right arm, though there is no lump on the right arm. The rash comes and goes, and the lump swells to different sizes. Should we also contact a dermatologist? or can this all be solved with a visit to see if the biopsy is in order?
    wantsanswers 22 Replies
    • December 23, 2008
    • 05:38 PM
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  • Your mum can use her own the mind-body conection and hands with their natural healing energy to treat the lump and rush. Place the palm on affected spot and focussing of projecting the call for self-healing (which is happening non stop, taking care of all kind of things, from the air etc.). She can mentally also 'talk' to all the cells invloved, and ask them to release all energy hat made for the problem, and revert back to the original, pristine healthy energy blueprint. ;) I am suggesting it because I am a natural healer and holistic therapist (see my website) and I use it all the time, for self-healing and in my work, teaching patients to use it. All kind of problems respond to that (including the supposedly untreatable ones). :)
    tiyana 1 Replies
    • December 23, 2008
    • 09:12 PM
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  • Now,for a dose of reality,not hocus-pocus.Is the rash symmetrical;that is,is it on the same place on each arm?If so,it;s almost surely a skin allergy,to meds&/or food.Next,yes,it is the right thing to do to see a surgeon for a biopsy,whether he will do it or not.It's possible that he could know what it is from just an examination.:)
    richard wayne2b 1232 Replies
    • December 23, 2008
    • 09:25 PM
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