Multiple autoimmune diseases
I was wondering if there were others with multiple diagnosis. I have 8 autoimmune diseases and 6 other long term illnesses. I can't find anything on the internet for that many. Is that a wierd thing or just they don't study that kinda thing.
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Peach414144 What you name here fits well into the description of Gelsolin, as well. At this point, it is very important for you to be diagnosed in a molecular study. If you live anywhere near Emory or Duke, I would contact their med schools. They are among the best. Or Nashville (Tennessee University), etc.
Autoimmune diseases are no fun. Dorothy
Hi Oldkarl and whomever else is reading this, this is Peach again. It seems we both have many of the same diseases (or problems) with our bodies. Some inherited, some where and how we live and eat and lifestyles etc., etc., etc. We know we are suffering mentally and physically yet we keep going on. Why? Many, many reasons why and perhaps so we can leave a legacy of trying to help others who are suffering. To let them know that they are not alone, that they are not the only ones. Would it be kind to place our brains into a human looking robot to live out the rest of lour lives without the many pains we are suffering with? Then to go into the hereafter living out the rest of our lives in a much more pleasant way. Instead of spending much monies on drugs, pills for pain which do hurt the body organs (and really do not do much for the pain itself) but to muddle the mind create the "THING" which will hold our brain (and soul)? Now I must come out of the deep abyss and be back to reality, "Ouch it does hurt so much".
is there a department at Mayo Clinic who helps people who suffer with multiple auto immune diseases? I need to find help. I see so many specialists. yet, no one talks to each other. they all say " I have never heard of anyone with all the auto immune diseases you have." yet, nobody does any research into why this is happening? I called the mayo clinic in Fl because its closest and they said I need to see internal medicine department. I know they are going to refer me to rheumatology so why not start there? I will be traveling for this appointment/ appointments and I use a wheelchair ...
yes. me! did you go to the mayo clinic yet? were they able to help you?
@frawlsco You sure sound like you’re having a difficult time getting help. I understand that Mayo Clinic wants you to see someone in internal medicine first. That is because that is how insurance works. Everyone starts with their PCP or internal medicine for a basic workup. They can then be referred to a specialist (rheumatologist). I entered a link that you may find helpful. It’s from the National Institutes of Health.
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
They may even have a phone number you could try. I have another resource, that i will find, that may also be of help.
Will you try this and let me know what you’ve learned?
The Autoimmune Association just held their 1st summit to discuss all the issues surrounding autoimmune diseases.
You can look up Autoimmune Association on YouTube and a flyer for the summit should come up. Just to the right of the flyer is a list of topics you can listen to. One which might interest you is “Path to a Rare Disease Diagnosis.”
Let me know what you think!
I have Sjogren but worried about other things that may happen
I have Many autoimmune issues I am so glad you posted this I will be looking into this information thanks
I also was told I have autoimmune disease about 4 years ago then told low platelets and fatty liver disease. Had liver biopsy this year and diagnosed with PBC and cirrhosis. I thought that was and enough! I have been on thyroid pills for 23 years and didn’t think much about it. I am so sorry for everyone’s pain and guess I better start reading more about this.