Scleroderma & Raynaud's UK (SRUK)
6,787 members3,211 posts

Does your Doctor know about Autoimmune Disease's?

Because after the birth of my second son in 1995, I went back into the Hospital and was blind and paralysed and unresponsive to any Drs commands. Just 12 days after giving birth! I was sent home with a diagnosis of post partum Psychosis and that I needed a shrink.

Thank God the shrink had an education on Multiple Sclerosis as he was the one that diagnosed me way before the MS specialist did.

So I have MS, I also have Lupus, Sjogrens', Sarcoidosis, Psorisis, Optic Neuritis, Scleritis and Blifferitis. I have systemic Scleroderma and my mom has a whole host of the same diseases and more including Hashimotos disease. I guess I would like to know why the Doctors don't find this to be interesting and why they are unaware of these diseases?

4 Replies

For most of my life I was told that it was all in my head and so forth. During my pregnancy's and after, my symptoms got a lot worse. The doctors told me it was a normal part of pregnancy to lose all feeling in my arms and hands, to have massive rashes, arthritis in my joints and so forth. They didn't have a clue. I was placed on anti-anxiety medications and told to see a shrink, I don't know how many times. After having a mini stroke, I was finally told I had Lupus and Dermatomyositis. Then in the same year got diagnosed with Sjorgens, Raynauds, Hashimoto's and Sleroderma. I have learned that most doctors have no idea what these things are and some think it's all in our heads. Just recently a nuro told me that all my autoimmunes are from me being an abused child. That I've created them because of my past, but in the same sentence told me I was to sick for him to treat me. Alot of the time I feel like I can't win with most doctors and I agree with you, why aren't they educating doctors regarding autoimmunes.....


Unbelieveable! They told me I had Mini Strokes too, but come to find out it was the MS.. as Multiple Sclerosis does MIMIC STROKES"! This is very important to know as I had the same experience as you did.

The Drs also sent me home on Ativan 3mg a day as I had tremors too. After 5 yrs and up to 18 mg of Ativan a day and FINALLY getting the proper diagnosis, I had to be detoxed off of the Ativan as it was shutting down my digestive system. Oh and I also had 3 Reumotologist tell me I had Fibromyalgia when in fact I had Sarcoidosis and Eryethema Nodosum.

I have had 2 Doctors tell me that they spent over 90 minutes counceling me on my so called.. "complaints.

NEVER again do I let a Doctor insult my intelligence. I am now self educated and Either they work with me or they don't work for me, after all we do pay them to diagnose us.

But to say that Autoimmune is caused from abuse.. is actually saying.. "Its all in your head!

This is what is wrong with the health care system, we all go see a Dr to find out what is wrong with us and they either don't know or are simply not educated about Autoimmune Related Diseases. So they send us for Unnecessary tests & surgery's and they write us a script, right? But I guess my question would now be, if this drug is for my MS, is it also good for my Psoriasis? Or my Lupus? How about my Sarcoidosis? LOL! This is why I am an advocate for as I don't want to see other women go through all the red tape as you & I did!

I am an advocate for and now lead a Scleroderma & Autoimmune Related Diseases group in Mich. I can't stress enough.. how important it is to spread the word about these diseases. I am hoping to be the first chapter in Michigan, then the Doctors will have to listen to us when we all come together.. as Autoimmune affects more women & children than Men and sometimes can be life threatening. You can order a book from this site called The Autoimmune Connecction" by Rita Baron-Faust and Jill P. Buyon, MD.

I like to think of this book as the patients bible" has all of the Autoimmune Diseases in the book, along with tests that your Dr should be giving you and very interesting stories about patients telling the same stories as we shared with each other. ALSO, you will have amunition when you take this book into a Drs office as most of them DO NOT KNOW ABOUT THIS BOOK..but you could also be an advocate for aarda and help spread the word with me. This does not have to happen to anyone! This should not happen to anyone..all we have to do is Make these Diseases known. But we need to come together as one! Thanks for responding to my note, and I would like to hear your thoughts on what I have said here.

Thanks again Toniraquel,

Best of Health to all of Us!!


Autoimmune Disease is a broad category of related diseases in which the person's immune system attacks the body's own tissue. This occurs when the body's system goes awry and mistakenly attacks the tissues and organs it was designed to protect. Normally the immune system protects the body by responding to invading microorganisms, such as Bacteria and Viruses. It does this by producing antibodies which are special proteins that recognize and destroy the invaders. Autoimmune diseases occur when these autoantibodies attack the body's own cells, tissues and organs. Women are affected three times more often than men. Once a patient develops an autoimmune disease, the odds of developing another are greatly increased. Best of Health to all of you.


The reason doctors don't know about us is because research is poor though it is getting better. Drug firms don't sponsor research for us because there is not enough of us to be worth their while (money). Ann Maudsley from the RSA has the same disease as us but puts herself to terrible experiences to raise money for us. Some doctors and nurses also help. I find it difficult to raise funds myself because everyone gives to cancer and heart which affect lots of people. Promote research. Give money to the RSA.


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