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Autonomic Dysfunction + POTS + LUPUS + Tachycardia = Rejection Letter
Autoimmune Diseases | Last Active: Feb 20 2:52pm | Replies (12)Comment receiving replies
Anna, I have experienced the same rejection despite being a case multiple doctors have not been able to help. The letter I received stated that they do not believe that they can do any more for me than my doctors here can. To me, that means that because they don’t fully understand or have no real treatments available for widespread inflammation, a possible sub-clinical autoimmune issue, plus fibromyalgia, sudden onset of both hypothyroidism and now heart arrhythmia, chronic fatigue/ME, osteoporosis, gastroparesis, Reynaud’s, rosacea, and IBS combined, there is no point in me visiting them. Obviously on my side of things, this feels uncaring and frustrating. If a clinic that takes up one third of the entire city of Rochester, MN can’t manage to squeeze me in, then how can I be expected to find help at a smaller one whose physicians haven’t been able to help me in over 20 years of ever-worsening health?
I have fought to get in before, and this time, I’ve taken a 23 and me DNA test hoping it will turn up something that has been overlooked since my labs are always off but “subclinical” and becuase in my 20’s before Lyme testing was done, I suffered a tick bite followed by Epstein-Barr/pneumonia confection that lead to a cascade of health issues no doctor could explain or bother to test or treat me for.
You may want to consider trying to get your own answers, so you can demonstrate that you have something they feel they can help with.
Frankly, I blame insurance companies that fight having to acknowledge let alone cover adequate Lyme and persistent Lyme testing, among other suspected disorders, and yes, I do blame the doctors who know to what extent insurance companies dictate testing and such yet do not band together and speak out against their unethical policies.
But now there exists laboratory services and tests one can order like the DNA tests. Read about your condition online, find journal articles by using Google and search for scholarly articles (your condition/s) so you have a source they recognize as valid and find tests you can have done. If you can’t afford that, see if you qualify to participate in a study of your condition, etc.
No easy path forward, but better than no path.
I’m sorry it has been so difficult for you. Good Luck!
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I’m echoing that loudly. I’ve been slapped in the face with closed doors since going on Medicare. They rule the Docs in terms of the frequency testing may be ordered - or if it may be ordered at all. Some docs I have a longer term relationship with will tell me “Medicare won’t cover that …unless…”. So I do the groundwork of figuring out how my symptoms can be bundled into a working diagnosis and what testing will prove or disprove and present it. Sometimes the Doc won’t buy into a given scenario- so the pre-work and accuracy is important.
I recommend Nat’l Institute of Health .. aka NIH.. does a good job of reviewing studies and providing links which contain Synopses and frequently data tables.
I couldn’t agree more that Docs should use their fraternity better with insurers, including Medicare. Most would say they have because they are in a medical collective. They can’t refer out of the collective and the point is to raise the tide (profit) for everyone in the collective.
Anyway - it’s complicated. But you’ll be more prepared with being your own advocate and developing good theories/ questions. You just have to arm yourself with facts.