Autoimmune diagnosing

Hello @bunnysammy – Welcome to Mayo Connect. I’m happy you found us. Connect is a good place to share your health concerns, ask questions and read what other Connect members with similar health issues are doing for treatments. I’m sorry you haven’t been able to get any solid answers. I’m sure that can get you feeling like giving up. Don’t do it! Posting on Connect is a good start and hopefully someone can provide information that will help. Here is a story that may help you know you are not alone:

What happens when you have a disease doctors can’t diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome
– https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

I'm also tagging a few members who have had difficulty getting a diagnosis. @lillone43, @heidisue, @kibwezi, @techi, @sacolucci can you offer any suggestions for @bunnysammy ?

One thing I can think of is to make a list of all your symptoms and questions and maybe a daily pain log rating your pain. Then take that with you to your doctors appointment and see if you can get some answers. It's so easy to forget to ask or tell the doctor your main questions during the appointment and the list can become your talking points.

John

I feel for you Bunny I too was six months before my Doctor took much notice of my condition....I had lost twenty pounds looked like heck and my husband was taking me every week to see him.....he still insisted that there was nothing wrong with me.....I think I have to explain that he thought in the first place that it was my heart and I went through all the tests for that ....at that time blood was drawn and didn't show anything wrong....so the Doctor would tell me that there was nothing wrong with me......I got so week that he took more blood ....phoned me that evening to tell me I hadn't been imanaging this and there was something wrong......I collapsed completely three days after and had to be taken into hospital.....
That was ten years ago and I have been attending OHSU ever since....so have faith I think you will be looked after once someone takes you seriously....keep talking to the Mayo Clinic it helps.....Beryl

Thanks John:) I'll check out that Ted talk.
I've been writing down a log of my symptoms for the past month. I didn't really think about it before. Logging the pain scale is a good idea. I have a tendency to down play pain so if I write it down when it's happening I'll be more honest.

Oh no. That sounds terrible. I hate that sometimes it takes something extreme happening for doctors to believe people.

Thanks for the support:)

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.

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.

Also, thank you:)

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.

We it is very hard to find doctors who care. Itbtok me 3 years and 3 rheumatologist to find one that cred. They are out there. You just have to be your own advocate and see as many doctors it takes.