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Desperate for Advice
I hope this message doesn’t come across as super negative or pessimistic, I am usually a very happy positive person. However, I am at a loss and feeling like I’m losing myself and this is basically my cry for help to anyone who may be able to provide me with some sort of guidance.
After spending thousands and thousands of dollars trying to figure out answers and how to get some relief for an endless list health issues as well as trying to figure out a diagnosis, I brought up genetic testing to my primary to at least hopefully find an anxiety/depression medication that would work because I feel that I’ve tried everything and it either doesn’t work, or I have major side effects. She had basically told me I’d have to go through an outside third party because she wouldn’t know how to read my results. I felt extremely frustrated because I had learned about genetic testing from Mayo’s website and I just want to feel okay again.
My personal experience over the last several years feels like I’ve just been pushed to the side and haven’t gotten any help or answers. I feel like my appointments are me trying to convince doctor that something isn’t right, or I’m diagnosing myself and they agree without any further questions/testing. When I do have testing/imaging done, usually there is some sort of abnormality but it’s just below the criteria to be a concern. I KNOW something is wrong but I can’t afford to continue to go to the doctor, not be heard, or get any answers to my concerns. I feel so incredibly defeated and have spent numerous hours searching the internet trying to find answers. I’m getting emotional just typing this. If anyone has any advice or recommendations I would truly truly appreciate it more than you know.
Health concerns-
•SEVERE Raynaud's (diagnosed myself, doctor didn’t do further testing. Started 2 years ago but more severe in the last year)
•protruding veins- more specifically after Raynaud’s episodes
•Severe anxiety/depression
•Occasional lump in neck near my esophagus that has a popping sensation when I swallow (had imaging done, showed a lump but “size isn’t concerning yet”).
•ADHD
•painful abnormal periods my whole life. Had imaging done and there showed some issues with my ovaries and something to do with lining somewhere (again, no phone call to explain the imaging/results to me and no diagnosis)
•major brain fog/memory loss
•rigid brittle nails, sometimes peeling
•constant peeling lips, also occasional angular colitis
•constant craving for salt
•stretch marks even when my body weight isn’t fluctuating- I’m 31 and my weight stays about the same
•thin stretchy skin
•terrible scar healing
•very flexible limbs, fingers, toes- my friends and family constantly make comments to me about my flexible hands or the way abnormal ways I sit because it feels comfortable to me (this sounds weird, but it’s hard to explain).
•joints pop out of place frequently
•purple/blue lips (could be Raynaud’s)
•swelling and flushing of the nose
•lower back and abdominal pain pretty much constantly
•abdominal bloat
Thank you for taking the time to read ♥️
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Anyone?
100% to this comment! I also work with an MD and also an ND (Naturopathic Doctor). I also receive regular acupuncture treatments which, believe it or not, have lessened my anxiety. Don't ask me how- just reporting the fact :). An MD will diagnosis (hopefully although they make a lot of mistakes) and give you medicine to deal with symptoms and an ND will work on alleviating or lessening the root cause. For instance, I too, have several auto-immune disorders and I take meds (Synthroid). My ND explained that auto immunity might be genetic but more often it is caused by inflammation in the body. The main reason for inflammation is toxicity in the gut. So I cleaned up my diet (I wont list all of the things I cant eat), drank a lot more water, took specific dietary supplements, exercised (not as much as I should) and it has made a world of difference. I hope this is helpful to someone.
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7 ReactionsI am glad you posted and am so sorry you are dealing with all of that. I hope you can find a doctor that listens and honors the fact that you are the expert on your body. I also work with an MD and also an ND (Naturopathic Doctor). I also receive regular acupuncture treatments which, believe it or not, have lessened my anxiety. Don't ask me how- just reporting the fact :). An MD will diagnosis (hopefully although they make a lot of mistakes) and give you medicine to deal with symptoms and an ND will work on alleviating or lessening the root cause. For instance, I too, have several auto-immune disorders and I take meds (Synthroid). My ND explained that auto immunity might be genetic but more often it is caused by inflammation in the body. The main reason for inflammation is toxicity in the gut. So I cleaned up my diet (I wont list all of the things I cant eat), drank a lot more water, took specific dietary supplements, exercised (not as much as I should) and it has made a world of difference. I hope this is helpful to someone.
Wow, it sounds like you’re having several symptoms! Hard to pinpoint when there are so many, but I am wondering if you’ve had a complete Thyroid panel done? I suffer from Hashimoto’s and Hypothyroidism for which I manage with 75 mcg of Synthroid. If your general doctor will do it, ask him/her to run that thyroid panel and have your TSH, T-3free, T4-free, TPO Antibodies and Thyroperoxidase levels checked. When you said blue scarring, I had that after my babies were born, but they’re adults now and that was probably my first sign that I have Hashimoto’s. I was just diagnosed in 2023. My scores were very high, which told me and my doctor that I have Hashimoto’s and Hypothyroidism for many years, untreated. I would start with that blood test and see what your results are. Good luck and good health.
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1 ReactionHave you checked for Ehlers-Danlos syndrome? It matches almost everything you said and was the first thing I thought of. Also, Raynauds is typically a secondary disease. You would need a geneticist to help you diagnose but it’ll be a long wait. Your PCP is correct she can’t help you with that unfortunately. I wish you the best!
I would go to a teaching hospital in your area. Get in with a clinic associated w/teaching hospital. Usually the doctors @ clinic are also professors @ teaching hospital.
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1 ReactionRead up on Ehlers danlos about your joints. Mine over extend diagnosed by a rheumatologist. Also a rheumatologist does genetic testing. A oncologist also does genetic testing but mine was autoimmune..
As far as heavy menstrual cycles my doctor obgyn tested me for ovarian cancer. I tested positive but when I had my total hysterectomy by an oncologist I had cyst in my ovaries and uterus. That was causing my pain. I also lost over 10 lbs when they took out my uterus and ovaries.
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1 ReactionMost neurologist are great historians and can tell you what the MRI showed. Had to find a diagnostision good at searching for Zebra diagnosis. Academic facilities tend to have eager residents who want to dig deep to make a rare diagnosis.
Correction “hard to find”.
I agree with those who suggested an anti-inflammatory diet and working toward a heathy gut microbiome. I have hypermobility syndrome (not enough symptoms for Ehlers Danlos). I had Hashimotos and long ago my thyroid was removed because that’s what they did in 1980(?). My neurologist said Hashimotos often presents with hypermobility. I’m a nurse and have had stubborn and difficult docs. Please switch. There are good ones out there. The genetic testing is a great idea.
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