Share this:
denadet
@denadet

Posts: 1
Joined: Jan 05, 2019

Multiple! autoimmune diseases

Posted by @denadet, Sat, Jan 5 4:26pm

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.

REPLY

Hi @denadet, welcome to Mayo Clinic Connect. I've been blessed by a few autoimmune diseases but not 8. I know there are others here on Connect with multiple autoimmune diseases and I think a lot of them post in the follow discussion.

Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?utm_campaign=search

I think somebody studies the number of autoimmune diseases. Here are some sites I found that identify all of the different types.

There are more than 100 Autoimmune Diseases
https://www.aarda.org/diseaselist/

Autoimmune Statistics
http://www.autoimmuneregistry.org/autoimmune-statistics/

Liked by becsbuddy, denadet

Like you I have multiple autoimmune diseases. When I sought treatment at Mayo in Rochester in the doctors felt that all of mine would stay in the endicrine system. Not so. I now have RA and all of its variants, alopecia areata. And pemphigus. I’m still developing them at age 70.

Hi @marylcsw, I see this is your first post and I would like to welcome you to Mayo Clinic Connect. Thank you for sharing. I have small fiber PN and polymyalgia rheumatica which is currently in remission. Are you able to share any treatments that help with your health conditions?

Liked by becsbuddy

@johnbishop

Hi @marylcsw, I see this is your first post and I would like to welcome you to Mayo Clinic Connect. Thank you for sharing. I have small fiber PN and polymyalgia rheumatica which is currently in remission. Are you able to share any treatments that help with your health conditions?

Jump to this post

Hi @johnbishop. It certainly is nice of you to share your experience and knowledge and support and direct the folks here. I’ve never been a member of a group like this, nor do I participate in social media. My story began in 2014 when I began having unexplained twitches and cramping in my shoulder and then my legs. It progressed quickly and the pain and sleep deprivation was very difficult. An MRI shows white matter brain lesions and the initial diagnosis was thought to be MS. As some may not be aware, there is no definitive test for MS. Many meds were tried to alleviate pain and sleep with no success. No sleep apnea – had a sleep study done. Waited 2 years while my neurologist took the “wait and see” approach. The trouble was my symptoms continued to increase to the point my pain was not allowing any sleep at all. I was prescribed Vicodin and cannabis. Sleep got slightly better and I was obviously out of it all the time. Like many here, I have to choose between the pain or the side effects of the meds. I was an entrepreneur who had worked for myself most of my career. Have Meniere’s Disease which thankfully is in remission. In the meantime, back issues popped up, and the next thing I know, I’m having spinal fusion/stenosis surgery which involved fusing 4 vertebrae and 3 discs together. The operation made my SFN worse and created foot drop in my left leg where a permanently crushed nerve gives me increased numbness in my left leg from my hip to my toes. I have little sensation in my feet. I share my story to help. Many here face far more daunting challenges than I. However, I joined the group to help. The time suffering BUT also learning was invaluable. My advice: Believe what your body tells you. You are not crazy. Always get a second opinion. My second neurologist ordered core samples of my calves and thighs and confirmed SFN MS and SFN are often mistaken for one another as symptoms are similar. Lyrica has helped me tremendously. To rehab my back, I did PT at home for 3 months, outpatient for 3 months and now I strength train 3 times a week. It helps. It’s counterintuitive, but it helps. I’m off opiates but suffering more pain. Cannabis helps but is not a cure all. I take 2000mcg of B12 every day. My SFN is supposedly idiopathic and potentially non length dependent. I’ve read people wondering if SFN can cause twitching, bladder control, cramping, and all kinds of symptoms which will make you think you’re crazy. It can. You’re not crazy. Somedays I can barely walk 100 yards. I’m in my 50’s, pretty good shape, not overweight and I try and eat well. I’m far from perfect. One of the many things I’ve learned relates to pain. Trying to divert your brain from focusing on the pain is key in my opinion. Whether it’s medication, laying down, applying heat (I do), wearing the right socks ( I use Footjoy golf socks. Pricey but worth it). In general I find if I can try and focus on something else it can help, but some days I can’t get out of bed. Try and gather as many “tools” as you can. Exercise, yoga, meditation(about to try), acupuncture (didn’t help me), massage, medications. You can buy a TENS unit on Amazon for under $30 which will stimulate and not solve the pain, but help with the distraction. I wish you all well. I’m still learning. I’m happy to share what I’ve learned if it helps in any way. Happy New Year and best of luck to all.

@marylcsw

Like you I have multiple autoimmune diseases. When I sought treatment at Mayo in Rochester in the doctors felt that all of mine would stay in the endicrine system. Not so. I now have RA and all of its variants, alopecia areata. And pemphigus. I’m still developing them at age 70.

Jump to this post

Sure. I was diagnosed with juvenile myxedema at age 12. At that time I was hospitalized for a week while they began treatment with thyroid. At age 27 I was diagnosed with ovarian failure. In my 40’s I began to have problems with lichen planes. My 50,s brought RA and Shougruns. I was started on methotrexate, but had liver issues. I was then started on Enbrel which managed fairly well for a few years. Then my rheumatologist began switching meds due to an elevated Vectra score. After trying Humira and Orencia, he switched me to Actemra infusions. After my third infusion, I developed a rash that was very resident to meds. My dermatologist referred me to a specialist who diagnosed me with RA in the skin. In the interim I changed rheumatologist. My new rheumatologist retested me and found that I had latent TB. Following treatment for that I was referred to an ENT for sinus issues. After surgery, I had difficulty swallowing. The ENT referred me to a gastroenterologist who attempted to dilate a strictur. She gave up after three tries and referred me to a specialist. He performed several dilatation (25) before diagnosing esophageal Pemphigus vulgaris and referring me back to rheumatology. He stated that he did not treat it and referred me to dermatology. She recommended Mayo. The team there recommended Rutuxin. I’m still having issues with the stricture and pemphigus, but I’ve been able to go 3 months without dilatation. Prior to that I could only go 3 weeks. Hopefully with time the stricture and esophageal inflammation will resolve. My most recent autoimmune is alopecia areata. Dealing with hair loss has been stressful. I’m hoping that with treatment it will grow back.

Hi @givinghope, welcome to Connect and thank you for sharing. I like your @membername…it's appropriate for all of us here participating on Mayo Clinic Connect. Sharing our health conditions and treatments that have helped us does give new members hope and lets them know they are not alone so thank you!

Liked by becsbuddy

@marylcsw

Sure. I was diagnosed with juvenile myxedema at age 12. At that time I was hospitalized for a week while they began treatment with thyroid. At age 27 I was diagnosed with ovarian failure. In my 40’s I began to have problems with lichen planes. My 50,s brought RA and Shougruns. I was started on methotrexate, but had liver issues. I was then started on Enbrel which managed fairly well for a few years. Then my rheumatologist began switching meds due to an elevated Vectra score. After trying Humira and Orencia, he switched me to Actemra infusions. After my third infusion, I developed a rash that was very resident to meds. My dermatologist referred me to a specialist who diagnosed me with RA in the skin. In the interim I changed rheumatologist. My new rheumatologist retested me and found that I had latent TB. Following treatment for that I was referred to an ENT for sinus issues. After surgery, I had difficulty swallowing. The ENT referred me to a gastroenterologist who attempted to dilate a strictur. She gave up after three tries and referred me to a specialist. He performed several dilatation (25) before diagnosing esophageal Pemphigus vulgaris and referring me back to rheumatology. He stated that he did not treat it and referred me to dermatology. She recommended Mayo. The team there recommended Rutuxin. I’m still having issues with the stricture and pemphigus, but I’ve been able to go 3 months without dilatation. Prior to that I could only go 3 weeks. Hopefully with time the stricture and esophageal inflammation will resolve. My most recent autoimmune is alopecia areata. Dealing with hair loss has been stressful. I’m hoping that with treatment it will grow back.

Jump to this post

Have you been tested for scleroderma??

@johnbishop

Hi @givinghope, welcome to Connect and thank you for sharing. I like your @membername…it's appropriate for all of us here participating on Mayo Clinic Connect. Sharing our health conditions and treatments that have helped us does give new members hope and lets them know they are not alone so thank you!

Jump to this post

@johnbishop – thank you for making me feel welcome. I’m here to hopefully be part of the solution:)

@laferg

Have you been tested for scleroderma??

Jump to this post

Yes that test was done when I first presented with Pemphigus. It was negative. Also my rheumatologist screened and felt that the test was accurate.

@laferg

Have you been tested for scleroderma??

Jump to this post

Yes. It was negative.

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. I can't touch anything frozen with bare skin, I have to wear three pair of socks. Constantly exhausted. As long as I am rambling, here is the short story: I had a primary that knew I had issues and he nearly killed me. My TSH was at 78, I was in diapers (I am 56), daily nose bleeds, high blood pressure patch and 26 pills a day!!! I went to him for a year with diarrhea and nausea. He just kept telling me to take Pepto. Luckily I had PBC and I was able to talk to another doctor (pcp wouldn't refer me out, thought he was "all knowing"). The GI found the ulcerative colitis and the gastroparesis….these were stopping the absorption of my thyroid meds. The last time I saw him was a year ago, he'd pulled out his RX pad again. I stood up and said, "no thanks, I need a new doctor" and I walked away.
Found a new primary (who told me about the TSH at 78). He took the blood pressure patch off (I have always had low bp) and told me I would get better.
I looked at what I was taking, 4 of the prescriptions I was taking was for anxiety and depression. I was misdiagnosed with anxiety/panic attacks that were, in fact, gastroparesis so I weaned myself off of those meds. I was also on Gabapentin for Fibromyalgia, I quit those, too.
Now I take my Urso, levothyroxine and an antacid. About once a year I get a round of Prednisone.
I lost 50 pounds in 3 months! I KNEW I wasn't eating enough to support weighing 180!!! I am only 5 feet tall!!
I have had people say to me that the doctors know what's best for me. I will NEVER put full trust in anyone regarding my health ever again. If I don't look out for me then no one will.
Hang in there and learn all you can so you can make decisions or at least ask questions so you understand.

SO SORRY YOU ARE HAVING A HARD TIME. HOPE THINGS IMPROVE FOR YOU GOOD LUCK

@mrsjaneorr

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. I can't touch anything frozen with bare skin, I have to wear three pair of socks. Constantly exhausted. As long as I am rambling, here is the short story: I had a primary that knew I had issues and he nearly killed me. My TSH was at 78, I was in diapers (I am 56), daily nose bleeds, high blood pressure patch and 26 pills a day!!! I went to him for a year with diarrhea and nausea. He just kept telling me to take Pepto. Luckily I had PBC and I was able to talk to another doctor (pcp wouldn't refer me out, thought he was "all knowing"). The GI found the ulcerative colitis and the gastroparesis….these were stopping the absorption of my thyroid meds. The last time I saw him was a year ago, he'd pulled out his RX pad again. I stood up and said, "no thanks, I need a new doctor" and I walked away.
Found a new primary (who told me about the TSH at 78). He took the blood pressure patch off (I have always had low bp) and told me I would get better.
I looked at what I was taking, 4 of the prescriptions I was taking was for anxiety and depression. I was misdiagnosed with anxiety/panic attacks that were, in fact, gastroparesis so I weaned myself off of those meds. I was also on Gabapentin for Fibromyalgia, I quit those, too.
Now I take my Urso, levothyroxine and an antacid. About once a year I get a round of Prednisone.
I lost 50 pounds in 3 months! I KNEW I wasn't eating enough to support weighing 180!!! I am only 5 feet tall!!
I have had people say to me that the doctors know what's best for me. I will NEVER put full trust in anyone regarding my health ever again. If I don't look out for me then no one will.
Hang in there and learn all you can so you can make decisions or at least ask questions so you understand.

Jump to this post

Hello @mrsjaneorr, welcome to Mayo Clinic Connect and thank you for sharing your experience and why it's so important to be your own advocate for your health. It means a lot coming from a person sharing their own personal experience and how being a strong advocate for their health has helped them. Great advice!

Liked by becsbuddy

I too have experienced multiple autoimmune diseases. They are: Type 1 diabetes, Boop Pneumonia, and now Microscopic Colitis. I think being on a special diet will help. Gluten is my enemy and I am eating a Caveman's diet to heal my colon. I am hoping no more AI diseases. I've had it with an over active immune system. I played in the dirt as a kid, got dirty, and my immune system attacked dirt and everything I came in contact as a kid.I think that helped! In Peru, I was informed by a Shaman that our problem in North America is that we live in a too clean environment. My parents and grandparents had to be super clean. NOT GOOD! Now we spray ourself with disinfective spray and that's a problem. Kids today stay inside and don't play in the dirt. All they want to do is play on their computer gadgets and sit on the couch. In Peru, they dig in the dirt for food, grow their own food, eat healthy and kids play in the dirt. I believe in what the Shaman told me. We live in an antiseptic enviornment and it's destroying our immune system.

Playing in the dirt as a child helped. I even ate dirt. Just think if I didn't play in the dirt. I'd probably be more sick with more autoimmune diseases. Kids today who don't play and get dirty will probably have more autoimmune diseases than we have today. Sad state of affairs.

Please login or register to post a reply.