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bunnysammy (@bunnysammy)

Autoimmune diagnosing

Autoimmune Diseases | Last Active: Apr 28 2:55pm | Replies (117)

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@lisabeans

Have your doctor run blood work for autoimmune diseases and see if you can get into a rheumatolgist. Keep logs of your symptoms and keep being an advocate for yourself. You may have to see a few doctors before getting any answers. Good luck and keep us posted.

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Replies to "Have your doctor run blood work for autoimmune diseases and see if you can get into..."

I set up an appointment with a rheumatologist who does naturopathic medicine and western. I've been writing everything down too. I just don't have anyone to talk to about it who gets it and I found this place. Last night the joints in my right hand were so painful I couldn't grasp anything and I had to cook with my left.

I just talked to mayo about my brain injury. The gal I talked to in neurology treated me terrible. 

I'm so sorry:( I talked to my regular doctor (no longer my doctor) about my IBS and she said "I think you just have an eating disorder." Because I'm small so my symptoms didn't matter. It's so hard to find good doctors who know what they're doing and care.

Hi @tina5,

I echo @gailb's sentiments: I’m so sorry to hear about your experience with the Neurology department. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d sincerely encourage you to also call the Office of Patient Experience, and speak to someone about your concerns:

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

Staff are available to discuss any comments or concerns you may have. Your experience certainly sounds like something Mayo Clinic would want to act upon. Let me know if I can help.

Thank you for that information. 

I am now 71 years old and still no diagnosis. (My symptoms seem to line up with ME-CFS.) The older I get, the more my symptoms seem to be skimmed over by doctors and my increasing age makes me appear less reliable as a reporter of these symptoms. The doctors I have seen want to push me into the "Depression Corner" of the room even as I explain myself: This is not depression – it is an understandable and reasonable response to all symptoms I have described – I am greatly discouraged and have less and less desire to participate in those things I used to love. I am a retired LPC. I have begun to see that older people are given less quality attention! Because we have less life to live so "what the heck?" I am exhausted due to these symptoms and due to the lack of acknowledgement and impatient treatment of doctors. I'm at the point of giving up on doctors – but then what? Thank you for allowing me to vent.

Hello @wandahondaconda — Welcome to Connect. I'm glad you found us. Connect is a safe place ask questions and learn what others with similar health problems are doing for treatment…and yes we sometimes have to vent and that's OK. You mention your symptoms seem to line up with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME-CFS). There are a couple of existing discussions that you may want to read and meet others with your symptoms and find out what they are doing for treatments.

Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

Hoping you find some answers to help you retrain/enlighten your doctors.

John

I know your frustration @wandahondaconda. I'm sorry that you feel un-noticed. Please don't give up! I have several autoimmune diseases and it seems sometimes like no one is hearing me. Most of these symptoms are so hard to describe to people and then of course they chime in with "oh, I have that too, it sucks getting old." I mostly hear that from friends and family. I have had some great doctors at Mayo Clinic who listen to me and try to understand what I am going through. The day a doctor told me I definitely did have Fibromyalgia and that I wasn't crazy, was one the the happiest days I had had in a while. Hang in there!!

@dntsass01 Hi I,ve had fibromyalgia over 30 years back then no one new what it was ,we had to trial @error to see how we good feel better Find a fibro group to talk to this helps Ive posted here in other post as to what I do for relieve Are you seeing a rheumatologist? ,this is the Dr that gave me relief.There are alot of this ngs you can do to help yourself besides medicine.

@tina5 I know for a fact that Mayo doesn't want anybody mistreated. Please report that incident, they like to know if an employee is not being respectful of the patients. Thank you.

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