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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Hi @curiousgirl2468, Welcome to Connect. Thank you for sharing such a detailed and well organized summary of your journey to get a diagnosis and treatment that helps. I have had genetic testing done but not for anxiety/depression medication that would work. There have been many discussions and comments about genetic testing for various conditions that might be helpful to scan through while you wait for members with experience to respond. Here are the search results for "genetic testing" that shows discussions, comments and more that might be helpful: https://connect.mayoclinic.org/search/?search=genetic+testing.
Have you thought about seeking help or a second opinion at a teaching hospital or major health facility like Mayo Clinic?
Look into pots . Postural orthostatic tachycardia syndrome and ehlers danlos syndrome my daughter has them and most of the symptoms you stated
@itsmeagain
Oh my, I think I'll start with a prayer for you.
But I’m going to tell you about a couple of things that worked for me.
- for depression I found that
Pristiq worked well for me
-for colitis which I get really
bad but have recently been
put on Budesinide-3 3mg
capsules every morning for
up to 60 days. I’m finally
getting some relief
- if the joints popping are in
in your hand it might be
trigger finger
I hope something here might help and I’ll certainly say some prayers for you.
Good luck!
Sjogren's syndrome and Ehlers-Danlos syndrome both popped into my head but I don't really know.
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
and
https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125
------------------------
Everything suggests an autoimmune disorder of some kind. Maybe multiple autoimmune disorders. There are about a hundred of known autoimmune disorders and they all tend to have overlapping features.
curiousgirl2468,
have you had autoimmune testing. Your primary should be able to order ANA antinuclear antibody testing. The results won't appear in a confusing way. The will tell you if it's likely you have an autoimmune disease which it sounds as though you have. It's just a serum draw.
In most US states you can order it yourself. https://www.jasonhealth.com/cart but then your insurance won't pay for it. $33 might be less expensive than your co pay with the physician.
Otherwise, and maybe anyway, you might get a referral to a rheumatologist.
With all those symptoms wouldn't it be daft not to feel some depression. You actually sound well motivated.
i, also will pray. sorry ur going thru all that, and i know personally how much harder physical troubles r when u have depression and anxiety. i have almost all ur symptoms, and i have lupus. ur pcp can test or refer to rheumaligist. my raynauds is severe! shoulnt need bloodwork as can see symptoms when severe. what worked 4 me might not 4 u. i have somewhat high bp, that was taking lisinopril 4. my pcp switched me 2 calcium channel blockers which also control my bp, but have a good side effect of helping enormously with my r's! he also put me on buspar 4 my anxiety. want willing 2 take anything addictive.. it "takes the edge off" my anxiety. cymbalta 4 depression, which also has good side effect of helping with musculoskeltal pain. btw, had 2 find another pcp 2 find one empathetic and helpful. dont give up!!
Curious, Don't feel like the lone ranger! I have gone through much of the same BS with our so called "medical professionals" the last 7 years with Lyme or something comparable!
Twenty six years ago I went through Stage IV colon cancer! I then proceeded to "DIE" from the chemo!
My doctors back then had a Special Drug from CDC and doctor to administer it. Then I needed a shunt instated into my heart. Because of a clot they found earlier they had to do a SPECIAL Procedure to insert the shunt! They brought a doctor in form Stanford to do the procedure!
My point is they would not do the same today!
Our medical establishment is controlled large corporations who don't care about their patients!
Just the Bottom Line!
Hang in there! All we can do is take the fight to our level! I refuse to let them Blow me off! I'm 78! I harass them until I feel satisfied with the results of why I am there!
I just fired my PCP because he lied to me! I asked him to refer me to a Urologist because of peeing at night and I had not had a Prostate exam in many years!
When I got to the Urologist he aske me why I was there? Told him i needed a Prostate exam! He just Laughed at me saying they don't do Prostate test on men over 75!
I finally said I would appreciate a urine test. He finally agreed!
Went back to my PCP and told him about the not doing Prostate exams or test on men over 75. He said that was true! I asked him then why did he give me the referral to the Urologist! He couldn't give me a straight answer!
I guess my point is we all need to be our own Advocates! We need to challenge our doctors! Make them give you straight honest answers!
Good Luck and Keep up the fight!
SUNDANCE aka RB
On a positive note you are still alive. I have a prostate so your story was interesting to me but the women here don't have one. I'm 72 with an enlarged prostate and I don't want another prostate exam. My PSA is normal so maybe my prostate should be left alone.
I have kidney stones so I see an urologist every year for a follow-up visit to monitor my kidney stones. I have an abdominal ct-scan every year and every year the report says enlarged prostate. The kidney stones are still there but not causing any problems. The recommendation is to leave the kidney stones alone too as long as they aren't moving anywhere.
"For individuals aged 55 to 69 years, the decision to undergo periodic PSA-based screening for prostate cancer should be an individual one. Before making the decision, a person should discuss the potential benefits and harms of screening with their clinician and consider these in the context of their own values and preferences.
PSA-based screening for prostate cancer is not recommended for individuals 70 years and older."
https://www.cancer.gov/types/prostate/psa-fact-sheet
After reading your post, I am at a loss for how to help you, except - you have a LEGAL right to having medical results and treatment explained to you in a way that YOU understand. I know it's hard, but you need to demand explanations when you don't understand and keep demanding it until you do understand. If you are unable to do this, I hope you can find a friend or family member who can go to appointments with you and be your advocate. The doctors work for you - make sure they do their job. Feel free to point out they have the duty to explain under HIPPA - this should get a rise out of them and make them pay more attention, because nobody wants to be caught not adhering to HIPPA. It's a legal standard for healthcare. If your doctor does not listen to you, then (if possible) find another doctor. Your doctor should be your partner in health care, not your adversary. I hope you are under a therapist's care for your mental health and are taking appropriate medication. If the meds you are taking aren't working for you - demand they try something else. It's a real crap shoot on finding the proper psych meds because they don't quite understand how the work; so you just have to keep trying until you find the right one for you. I am on a pile of meds (most preventative, but not all); and when I am given a new drug to take, I go right to drugs.com because you can read all about the drug AND get interactions with specific meds you are taking - very few doctors are aware of the interactions of drugs. Nurses are better at it, and pharmacists are best - but unless you get all your meds at the same place, they aren't going to be aware of any possible problems. I find it safer to run my own lists through drugs.com. I hope you start getting some answers because not knowing is only going to make your stress levels go up and that can create havoc on any body. Good luck and good wishes.
This may sound odd but you are stuck with the medical model of health they can't treat until there is a diagnosis that fits into the medical model. You may need to look at a holistic or functional approach. You won't be prescribed meds for relief. You will go through a very long intake appointment then a decision on how to approach. The changes that will be recommended to you will mostly be dietary. The goal is to bring you into health as naturally as possible.
I work with both medical doc and holistic doctor. As I get healthy I've been able to reduce and eliminate medication