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Struggling with anxiety while undergoing diagnostic testing

Posted by flow65 @flow65, Apr 17, 2022

I’m not sure if I have Dercum’s disease or not. Also not sure if it’s an autoimmune disease. I recently had an ultrasound done on my upper thighs. I felt small bumps under the skin. My dr felt some and had the ultrasound ordered. Some are tender. A couple of them painful. Not sure how many I have. I had to show the technician some of them. Results came back as lipomas. Supposedly non cancerous. My husband and I researched it. It could be a rare disease called Dercums. I also have GERD, anxiety, stress and now possibly this. Has anyone been dealing with this disease? Thank you

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oldkarl | @oldkarl | Jun 25, 2022

You are right to worry about Dercum's, etc. and how to be certain you are getting the right stuff from your medicare genome. Medicare needs to clean up their act. Over the years I have several variations from Medicare of who can order a sequencing or other genetic workup from an approved lab for Medicare coverage. I have been told this by Medicare people: 1. Any living adult besides the patient. 2. Any living adult connected in any way to the patient. 3. Any person with a college degree, medical or not. 4. Any specialist. 5. No specialist, 6. The PCP. 7. The PCP with an MD or DO. 8. A person with any medical training. EMT, chaplain, 9. licensed medical practitioner of any type. Now, I do not know for certain what the rules are, but my PCP refuses to order one for me because he does "not have the skills to CURE whatever might be found in my genome."(?) It would be nice for him to cure my Limb Girdle Muscular Dystrophy r23, although it is listed as uncurable. And a few other uncurable diseases I have. oldkarl

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Valerie | @lacy2 | May 21, 2023

.... can u find this again and let us know what happened. i think have had 2 on back but family said its nothing now under right knee and seems overnight possibly? one on arm and I am like you, a worrier.... i dont think my nurse practitoner will know and maybe a long long wait for a dr or specialist these days... how did you make out and how are you dealing with, THANKS J.

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richardab | @richardab | May 22, 2023

Not germane to your specific condition but anxiety over diagnostic testing is an issue for me. I had a lung nodule several years ago (cryptogenic organizing pneumonia). Ended up getting a PET scan. The nodule lit up like a Christmas tree. Until the biopsy was done (negative results for cancers), I was worrying myself to death. When I later got blood test results showing my immunoglobulins were out of order, elevated M-proteins, and other results, the immunologist suggested I see an oncologist because it looked like Myeloma. So more worries about having cancer. Turns out it is Smoldering, not Multiple Myeloma and doesn't require treatment yet but talk about stress hearing you might have cancer. So take results with a grain of salt until you can talk to physicians, don't read too much on the Internet about what could be wrong. Best of luck.

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1 reply
kensiejames | @kensiejames | May 23, 2023
In reply to @richardab "Not germane to your specific condition but anxiety over diagnostic testing is an issue for me...." + (show)
@richardab

Not germane to your specific condition but anxiety over diagnostic testing is an issue for me. I had a lung nodule several years ago (cryptogenic organizing pneumonia). Ended up getting a PET scan. The nodule lit up like a Christmas tree. Until the biopsy was done (negative results for cancers), I was worrying myself to death. When I later got blood test results showing my immunoglobulins were out of order, elevated M-proteins, and other results, the immunologist suggested I see an oncologist because it looked like Myeloma. So more worries about having cancer. Turns out it is Smoldering, not Multiple Myeloma and doesn't require treatment yet but talk about stress hearing you might have cancer. So take results with a grain of salt until you can talk to physicians, don't read too much on the Internet about what could be wrong. Best of luck.

Jump to this post

Thank you for sharing.
I have 9 lung nodules. I have RA and I am also a breast cancer survivor.
Due to go for a follow up scan this year. The stress can be overwhelming.
Hopefully no changes. 🙏🏻

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cbubba | @cbubba | Apr 11 1:42am
In reply to @flow65 "Thank you for thinking of me. Things just feel like piling up when you suffer from..." + (show)
@flow65

Thank you for thinking of me. Things just feel like piling up when you suffer from anxiety. I had to have a tooth pulled last week. That was traumatic dealing with anxiety everyday. Then after long trip from that I started spotting. I was so stressed out. The next day my husband and I went to immediate care. Had ultrasound done. No masses. But was told a little thickening of lining. My age of 66 was always told if you bleed it’s not good. Then physician assistant said ultrasound doesn’t pick up cancer. So I have to follow up with my gyne. I just had my checkup in March. I was even told at my age you don’t have to go every year. On her way out she even said if you have problems or bleed come back. Can’t see her this week. I hardly know her anyway. Only seen her twice. I’ll be seeing someone I don’t know. OMG. All of this more stress. I’m suppose to go for a scope/colonoscopy in June. I have GERD and should have the other end checked. I don’t do well with anesthesia. Plus having this anxiety I know it will be bad before and afterwards. I get nauseous and restless when I wake up and scared. I’ve been trying breathing exercise. Can’t relax. Just too much for me to handle. Nothing helps. My husband is always trying to help. I’m having trouble coping. I worry about everything. Scared of everything. Pandemic ruined me plus being a worrier. Sorry for such a long reply. Again thank you for your concern. Flo

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Hello. I hope that you still come on here. I’m wondering how you did tapering off of the Xanax? I have a similar issue that popped up when I started to taper from Clonazepam and I’m wondering if it could be related. I have several what I think are lipomas all over my glutes and thighs and sometimes they hurt. Especially the ones in my glutes. They push up against my nerves. This started to happen when I started to taper. Have you finished your Xanax taper? If so, have you noticed any change in the lipomas? I have a biopsy later this month and I’ve been worried that I have the Dercum’s disease but when I noticed that you were tapering off Xanax, it struck a cord. This all started a few months after I started my taper. I know benzodiazepine tapers can be extremely hard on the body and mind. Thanks!

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