Multiple autoimmune diseases

Posted by denadet @denadet, Jan 5, 2019

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@peach414144

Dear OldKarl, my eyes are so dry they are being treated by doctors and have also lost all teeth due to this. Gerd, two arthritis, Hashimotos, Rheumatoid and Psoriatic arthritis, Diabetes and right now the kidneys are ready for dialysis. These are among eight other medical problems to long to list. As well as now having Shingles. VERY IMPORTANT: Perhaps this Corona virus is prompting and producing the Shingles?

Jump to this post

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.

REPLY
@gingerw

@kidsmomof9 I have a few autoimmune-related conditions. It has made me a warrior as I navigate this journey! Mine include systemic lupus, fibromyalgia, a rare kidney disease, multiple myeloma, osteoarthritis.

Would you care to share your autoimmune conditions!
Ginger

Jump to this post

Autoimmune diseases are no fun. Dorothy

REPLY
@oldkarl

@kidsmomof9 Really just a question here. I have a systemic form of Autoimmune, Amyloidosis Gelsolin. Every tissue and fluid I have has been invaded by mutated proteins. I have been previously diagnosed with "Upon my first diagnosis, Sjogren's, I was advised that having just one auto immune disease is rare and to expect them to find more. Yes, they did. Primary Biliary Cholangitis, Hashimotos, Gastroparesis, Ulcerative Colitis, peripheral neuropathy GERD, arthritis. My eyes are too dry and I can rarely drive, lost my teeth to dry mouth." But my current diagnosis includes possible forms of Amyloidosis which shows all these symptoms, and now I have shingles as well. It makes me wonder if these systemic (impacts the whole bank of body tissues and fluids) are what you have, although it is quite rare. I can name a dystopia of every tissue from my toes to my cerebrum which is a result of Gelsolin. It is not violent, but the impact can be fatal, especially as it invades hearts, lungs, brain, pancreas, kidneys, liver, etc..

Jump to this post

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".

REPLY

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 …

REPLY

yes. me! did you go to the mayo clinic yet? were they able to help you?

REPLY
@frawlsco

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 …

Jump to this post

@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?

REPLY
@becsbuddy

@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?

Jump to this post

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!

REPLY
@becsbuddy

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!

Jump to this post

I have Sjogren but worried about other things that may happen

REPLY
@rexsan20

I have Sjogren but worried about other things that may happen

Jump to this post

I have Many autoimmune issues I am so glad you posted this I will be looking into this information thanks

REPLY
@deb8

I have Many autoimmune issues I am so glad you posted this I will be looking into this information thanks

Jump to this post

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.

REPLY
Please sign in or register to post a reply.