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 group.

@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?

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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!

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@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!

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I have Sjogren but worried about other things that may happen

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@rexsan20

I have Sjogren but worried about other things that may happen

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

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@deb8

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

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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.

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@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?

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thank you for responding. I will let you know what happens . I plan on setting up the appointment after the new year. I guess I see them first and then they request all the doctors files? I just hope it may be one problem which just hasn't been treated correctly. I don't know.

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@gema98

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.

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How did they find out about cirrhosis

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@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 …

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Hi Frawlsco this is Peach here. I have traveled your shoes (Or to be correct your wheelchair.) Have done the same, and have been treated the same (In my wheelchair). I can see why the patient must see the other departments first BUT if they could do this in a fashion that works in a timely manner. The wait in between each department involved is way, way to long. I also have three auto immune diseases. To me this wait brings on quite a bit of stress which adds on to the health issues. Now on the lighter side: As we wait: perhaps someone comes along to play a hand of cards, or another to read an enjoying whatever or just to talk about what the person waiting needs to calm their waiting time. I myself would volunteer for this as TO GIVE IS DEVINE and enjoyable. Do not feel alone as there are others who do care. Love

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@frawlsco

thank you for responding. I will let you know what happens . I plan on setting up the appointment after the new year. I guess I see them first and then they request all the doctors files? I just hope it may be one problem which just hasn't been treated correctly. I don't know.

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I do not know what category to put this reply into but here goes. I have three autoimmune diseases but now I have another big problem. Besides having all my other medical issues I have hypothyroidism for about thirty years AND NOW HAVE secondary hyperparathyroidism. Talk about your ups and downs. The paperwork from Quest shows I have had this for over two years and have been complaining to the nephrologist of the symptoms and pain but was told all is fine. Soooooo naturally I went to another doctor who immediately took tests which revealed the diagnosis. This took two years of not working with this problem and has placed me in the kidney category of stage four. Which could have been prevented if the doctor would have told me so I could watch my diet and etc. so to stop this progression. I now have worse eye problems and think I have TED thyroid eye disease due to the hyperparathyroidism. Again, there are no doctors in my county who address this diagnosis. Losing more eyesight. It is now taking away the enjoyment of watching television. Not much else to live for but I do still want to live. Is there an angel out there for me?

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@gema98

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.

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@gema98 You are right to start serious looking for additional disease. One thing we are learning quickly is that the "RARE" in "rare disease" really applies more to the DIAGNOSIS of the disease than to the "existence" of the disease within a person. I have a bunch of pathogenic, or damaging diseases in my family which we had never even heard of. Several of the family are being killed by diseases supposedly rare, but are just now coming to light. In my lifetime of 81 years, I have tracked over 300 symptoms, signs, etc, of so-called RARE diseases. Truth is, humankind is just now learning to take most of them seriously. And most of them do not have approved treatments yet. Things like Walker-Warburg, and LGMD2m and Clarkson's, and blood type AOB, etc. So do keep looking. My thyroid issues started about 65 years ago, and heart about 82 years ago, etc. But I am still alive, after being informally diagnosed at the ripe old age of 10 minutes by a smart country doctor and his nurse. @oldkarl

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@rexsan20

I have Sjogren but worried about other things that may happen

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@rexsan20 you say that you are worried about other things that may happen. Maybe the best solution is to live your life the best that you can and don’t worry about tomorrow! You probably don’t remember an old Doris Day song, “Que sera, sera, whatever will be, will be. Que sera, sera”

What worries you?

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@rexsan20

How did they find out about cirrhosis

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Liver biopsy

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@frawlsco

thank you for responding. I will let you know what happens . I plan on setting up the appointment after the new year. I guess I see them first and then they request all the doctors files? I just hope it may be one problem which just hasn't been treated correctly. I don't know.

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@frawlsco I’m so glad you’re going to move ahead and make an appointment. Who are you going to make the appointment with? When you call for the appointment, ask if they want your medical records ahead of time. Then you will need to go to each doctor office and sign a release of medical information. Make sure the new doctor and the previous ones all have permission to talk with each other. Privacy rules can be a headache, but they are for our protection.
Start writing down the top things that are causing you problems. Don’t rely on your memory!
Please let me know what you learn from your appointment

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