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Food for Thought - Why so many Autoimmune Diseases?
Autoimmune Diseases | Last Active: Mar 21, 2022 | Replies (29)Comment receiving replies
@johnbishop John last week l went to a new rheumatologist and the first thing he said why have you come to see me? I really don't know if that's the new questions the doctors ask you or what but anyway l told him about the mayo clinic and he explains to me if they cant find out why your ana and rnp is high then l won't but he decided to run all the test over again. Then by the end of the week he was prescribing hydrocholquine which l had an allergic reaction. I spent 80.00 for the med, er visit then another er visit because they thought l was having a stroke which was crazy and then when l go back to the er the doctor tells me werent you here the night before? Rude, rude,rude. Then l had to have a ct and it was normal so l called the doctors office to see if they where going to give me another med. Since having being told to return in 6months to now 2months. So l called the doctors office again because l could only leave the nurse a message. Now l have an appointment to see him. I asked her why am l going through all this? What did he see? Well she finally said mixed connective tissue. I looked that up and it seems like its just a lot of autoimmune immune diseases which l knew at the beginning but which one? Its like you are an experiment to something they dont have a clue. So l just wanted to know if this could be the problem you have with your liver that you already know you have liver disease. I thought you might know. It seems like the patient knows more than the doctor.
Replies to "@johnbishop John last week l went to a new rheumatologist and the first thing he said..."
Hi John, I went through that and got several different opinions (3 different rheumatologists and 3 dermatologists). One came up with a rare auto immune called dermatomyosistis w/o muscle involvement. After reading up on all my symptoms I realized many have the same symptoms. Antibiotics always helped my symptoms while the standard meds did nothing that I could identify (and I kept a detailed diary on a daily basis of how I felt, new rashes, etc. everything. After 4 years of in and out hospital for various things I decided I had many infections that finally were identified and treated. Today I'm much better but I still have some neuropathy and severe calcinosis which they all feel can't be treated. I'm just happy the infections were found and treated (liver was wrapped around infected gall bladder and I know I had some type of pneumonia that wasn't clearly identified for at least 6 or more months). Much more to my story but keep looking for additional opinions and something might make sense and actually help. Plaquenil didn't help me either. Good luck. Autoimmune is not easy for any doctor but they need to take the time and do various tests and do some research to help you. So many of them are a 10 minute visit standard.
Hello @techi,
It sounds like you are having such a frustrating experience, and I completely understand your last remark," It seems like the patient knows more than the doctor."
Getting a firm diagnosis remains one of the most challenging roles of any physician. With medical knowledge expanding so fast, and also becoming more specialized, it would be nice if, sometimes, a doctor acknowledged that he/she cannot be an expert in all conditions across all specialties. Specialists especially, have trained for so long that they may overlook the rapid advancements in medicine, and are then surprised to learn that patients with chronic illness may know more about their own condition!
I'd think that patients knowing stuff would make a doctor's job easier – to explain stuff and answer questions.
On the other hand, what is difficult is a patient wanting to treat themselves – that's hard for a doctor to accept or permit. When patients think they know better than the doctor, but don’t, that's when problems arise. And it's not because of what they do or don’t know, or because they ask questions. It is simply that they may want to control their own case, and are reluctant to let the doctor do his/her job.
Lisa @techi, there is so much therapeutic value in just being heard, and also in hearing about others. I encourage you to keep asking those questions and talking about your experiences – that's how we learn and support each other on Connect.
@johnbishop yes john he did diagnoses me with that l was suppose to see my rheumatologist today but the weather was bad so l get to see him next week and maybe tell him l wasted 80.00 on meds and now he can give me samples to see if l am not allergic to them and if l am not he can give me the prescription for free. I had wasting money on medicines that l cant take. You know what l mean. Havs a good evening John and thanks for the information l will look it up.
Connect
Hi Lisa (@techi), I'm sorry you are having so much difficulty. The ER doctor sounds like he needs an attitude adjustment. Did they diagnose you with Mixed Connective Tissue Disease? You might want to read through the conversations in this Connect discussion:
MCTD (Mixed Connective Tissue Disease)
-- https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/
John