Trying to find answers and right diagnosis and Dr

maybe you need to see a hematologist about the high ferritin, i know there are conditions that have that as well. Does your primary doctor have any other rheum recommendations maybe?

My primary is a joke. Hasn't called back since I reached out for help with high ferritin on November 28th. She has also,left the practice in last 3 weeks,and a malenurse practioner has taken over and has no clue what's going on. At this point, I am truly without a dr unfortunately.

I've taken a probably less tradition approach. Doctors to my mind will start out thinking along the lines of the more common diagnoses it seems before progressing along to the heavy hitter ones. I just went ahead and paid out of pocket for a serum test that looks for 50 cancers. At the time I did this last year a clinical trial was still being conducted on the test about 50 miles away from me. Had I driven there they would have overseen any necessary follow-up care. This test isn't infallible by any means, or suit everybody. There is a cheaper version I hear that offers less in the way of test results.

I had a lot of troubling symptoms, wasn't satisfied with my doctor's pace, felt age was no longer on my side, so I went this route. I discussed it with a specialist doctor (I self pay also to see) first and she said in a very matter of fact way that some of her patients choose to take this test and some of her patients don't. I went for it and have found the results thankfully reassuring while my primary doctor moves along at their set pace.

I am having right shoulder replacement surgery. I also have lymphoedema in my left arm. I am not supposed to have any punctures or blood pressure taken in my left arm. What alternate sites can be used for an IV line for surgery because they say they can't put it in my right arm because they will be working on that side?

I think we definitely have to be proactive for ourselves. I never thought it would be this difficult to obtain just basic care and concern. Today has been absolutely horrible, to the point I was thinking er. I have slept over 3 hrs a night in weeks. Mayne I will feel some better tomorrow, and get back up, and start moving forward some direction. I am kinda getting down in the dumps because I keep paying out of pocket all this money,and I am no closer. Feel like I ha e to..prove their is something wrong with me ,not only to Dr's but family. They all see the weight loss,and the blood loss,but expect me to go about every day like there is nothing wrong ..I guess because I do t ha e a named condition yet.

When I have done a popular symptom checker App it asks what part of the country you've lived in, your travel history, when have you been out of the country, have you been around animals, handle soil, ate certain types of food, etc., etc. You haven't travelled anywhere unusual?

My view is it is not my fault healthcare is so expensive in this country. When I was still working I'd hear about people returning to places like Taiwan just to get everything under the sun in healthcare for $1000. Healthcare is sadly big business in this country. "God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference." - God bless you.

Welcome @mfhain11, I have lymphedema in both legs but I think it were me I would ask the surgeon or care team doing the shoulder replacement surgery. Here is some information on the topic - you do have to register to read the full article but it's free to register.

"Can you put an IV in an arm with lymphedema?
These updated guidelines recommend that, if possible, IV access should be pursued in the unaffected arm first. If access can't be established in the unaffected arm, the guidelines suggest that standard limb precautions should be followed in patients with: Known lymphedema. Sustained chronic or unilateral swelling. May 6, 2021"
-- Are Post-Mastectomy Lymphedema Precautions Needed for All?
https://www.medpagetoday.com/meetingcoverage/ons/92193

Have you discussed your question with your doctor/surgeon?

I believe you need a competent rheumatologist. Howver, in my area, it takes upwards of 6 months to get an appointment with one as a new patient, there's a great shortage of them. Good luck.

Hi jej. First, I promise you are not alone in frustration with medical world. My saga is in 5th yr now, and I can barely count the number of doctors I've seen. Yes, some of them were total jerks like the one you just saw. Sometimes, it gets me really down. Depressed and feeling alone. The biggest fear is that I may never get better. And may never know why!! But, there are things you can do that will empower you to advocate for yourself. In 2020, my life took a nosedive that hasn't let up. I've had (or have) several of your symptoms. But some I don't have, and others of mine you don't have. We do have so many that are similar though. This will be a Part 1, and Part 2 type of msg but it may be worthwhile for you. This first one is just an introduction, and I will dig into more detail later. Mostly, I just want you to HANG ON. You are stronger than you know. Be back with Part 2 today. Hugs

Hi jej. Oops. I just posted in this thread thinking it was directly to you, but it's further down and in response to someone else. Darn! I am sending you more anyway, but do hope that you find that post. Xo