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.

@kathrynmc

I was seen at Mayo Clinic in Rochester MN in September of this year. I asked my Primary Doctor to call the Mayo Clinic Physicians referral line at 1-800-533-1564 to help get me a referral. My Doctor did this, then I was contacted by Mayo Clinic. I had to set up a Mayo Clinic account, then they sent me forms to fill out online to determine whether or not they would take my case. This was at the end of June, so it took three months to get my appointment, and I am grateful to been seen at Mayo, it is an amazing place. Kathryn

Jump to this post

@kathrynmc That is just great! We’re many tests done? Have any answers? You just have to tell me everything!!

REPLY
@gema98

My gastrointestinal doctor is who set this up for me as out patient in the hospital.

Jump to this post

thank you

REPLY
@petuniamom567

I have multiple diseases and wrote to Mayo asking for appointment with Primary Care Department thinking they would play quarterback and direct me to physicians to see.Surprise.Answer was that no one could see me.Lesson learned, I guess is to contact doctor who is specialist in particular ailment. However, this would mean seeing about 5 physicians. Since my underlying disease is autoimmune, I thought a generalist would think about what was happening in my body and perhaps come to some creative conclusion which would
then send my in the proper direction. Great disappointment since Mayo is one of the greatest medical centers in the world. It seems that no one looks at the patient as a whole anymore. We are split into separate pieces and often physicians don't maintain contact with each other which would help solve what's happening. Perhaps I'm just repeating what was said more briefly right before my post. But in the ancient days, internists did this sort of thing. Great strides have been made, but someone needs to think about the whole person. Each disease is not happening on its own. Good luck to all of us with multiple problems.

Jump to this post

Hello @petuniamom567 How terribly disappointing to be turned down by Mayo Clinic. I’m sure you had your heart set on getting some answers. Unfortunately, Mayo is not able to see everyone. Many times they feel that the patient can get good care at home. It can be very difficult to accept, but it’s true.
You said that your underlying disease is autoimmune, but that you have other problems going on and no one can figure them out. You would probably like a team of doctors? Have any of your doctors explained why they can’t do this for you?
I would really like to see you get some help. Is there a university hospital near you that might be able to provide a team approach?

REPLY
@becsbuddy

@kathrynmc That is just great! We’re many tests done? Have any answers? You just have to tell me everything!!

Jump to this post

I already had a diagnosis of Dermatomyositis with MDA5 antigen and ILD and I wanted to be seen at Mayo to get a second opinion on my treatment options. My Rheumatologist wanted me to start Rituximab Infusions. After researching, I saw that there are some serious side affects with Rituximab, so I wanted to get another opinion on my treatment options. I saw a Rheumatologist and Pulmonologist at Mayo. I did a Pulmonary Function Test and six minute walk, I also had a CT Chest scan. The PFT and CT scans were compared to my last ones in April. The Rheumatologist and Pulmonologist at Mayo determined that I had the correct diagnosis, and my lung function was stable and a little improved since my last ones in April. Praise the Lord! So my current treatment was working, so Mayo doctors recommended I continue with my current treatment, and have PFT every 3 months. Mayo Doctors also commented that I had a great health care team. Who quickly and correctly diagnosed me, and started aggressive treatment. That gave me more confidence and appreciation for my doctors. I left the Mayo Clinic with HOPE!
Kathryn

REPLY

I only have two. Amyloidosis and smoldering multiple myeloma.

REPLY
@kathrynmc

I already had a diagnosis of Dermatomyositis with MDA5 antigen and ILD and I wanted to be seen at Mayo to get a second opinion on my treatment options. My Rheumatologist wanted me to start Rituximab Infusions. After researching, I saw that there are some serious side affects with Rituximab, so I wanted to get another opinion on my treatment options. I saw a Rheumatologist and Pulmonologist at Mayo. I did a Pulmonary Function Test and six minute walk, I also had a CT Chest scan. The PFT and CT scans were compared to my last ones in April. The Rheumatologist and Pulmonologist at Mayo determined that I had the correct diagnosis, and my lung function was stable and a little improved since my last ones in April. Praise the Lord! So my current treatment was working, so Mayo doctors recommended I continue with my current treatment, and have PFT every 3 months. Mayo Doctors also commented that I had a great health care team. Who quickly and correctly diagnosed me, and started aggressive treatment. That gave me more confidence and appreciation for my doctors. I left the Mayo Clinic with HOPE!
Kathryn

Jump to this post

Kathryn, it just sounds so great! How perfect that the Mayo doctors said that you have a great team! I’m so glad to hear that.
As for rituxan, i had 4 cycles with 2 infusions each and had no problems (as long as the infusion was done slowly). I only stopped because it stopped working for me. What a bummer!
With your success and positive attitude, you’d be a great inspiration to other members, so please stay in touch with me and other members of this group!
So, what’s next for you? I know you’ll have a positive holiday season!

REPLY
@flcrakr1

I only have two. Amyloidosis and smoldering multiple myeloma.

Jump to this post

@flcrakr1 good morning! How are you doing with your amyloidosis and multiple myeloma? Did you have any specific questions about them that i can try to answer?

REPLY

Yes, I have Mixed Connective Tissue Disease (MCTD) as well as Central Core Disease (CCD). These two are accompanied by Rheumatoid Arthritis as well as Raynaud's Syndrome.

REPLY
@becsbuddy

Kathryn, it just sounds so great! How perfect that the Mayo doctors said that you have a great team! I’m so glad to hear that.
As for rituxan, i had 4 cycles with 2 infusions each and had no problems (as long as the infusion was done slowly). I only stopped because it stopped working for me. What a bummer!
With your success and positive attitude, you’d be a great inspiration to other members, so please stay in touch with me and other members of this group!
So, what’s next for you? I know you’ll have a positive holiday season!

Jump to this post

Thank You Becky,

Yes, I am looking forward to the Holiday’s and spending time with my family. I have been blessed, and have a lot to be thankful for. Happy Thanksgiving to everyone!
As to what’s next for me, after Christmas I will have labs to see how everything is going since cutting my dosage of prednisone to 7.5 mg daily. Trying to get off prednisone, which I have been on for almost a year. Then I will have another PFT, hopefully my lung function is remaining stable, and I can stay on current medications. Then follow up with my rheumatologist in January. Praying it’s a Happy New Year for Me! 🙏
Kathryn

REPLY
@gema98

Thank you! I truly hope so, I guess I should have asked questions back when they said blood enzymes were off. I never thought something like this was possible! I was a little overweight, ate frosting as a child as my mom made wedding cakes and others and I used to bake. I’ve had about 20 mild drinks in my life as I don’t like flavor of alcohol or coffee. Never did drugs or smoked, boring life as I put it! So now I eat chicken, turkey, whole grains, fruit, veggies.

Jump to this post

I’ve always believed healthy eating is the best way to live, and certainly my diet continues to be healthy…lots of fruit, veggies, whole grains, no sugar or white flour. I’ve always walked a lot, social drinking, no smoking, etc.. Never had to take medications, occasional cold, nothing more. But, I ended up with PBC, Sjogren’s Syndrome, Raynaud’s Syndrome, liver disease, a liver transplant, and neuropathy. As a rheumatologist PA told me…I have bad genes, along with a primary who repeatedly ignored my early “warning” symptoms.

Supposedly PBC and other autoimmune diseases can be triggered by infections. I traveled a lot in Mexico and had giardiasis several times. This may have been my trigger. But, bottom line…it’s in the genes.

Oh…coffee is reportedly good for the liver!

REPLY
@petuniamom567

I have multiple diseases and wrote to Mayo asking for appointment with Primary Care Department thinking they would play quarterback and direct me to physicians to see.Surprise.Answer was that no one could see me.Lesson learned, I guess is to contact doctor who is specialist in particular ailment. However, this would mean seeing about 5 physicians. Since my underlying disease is autoimmune, I thought a generalist would think about what was happening in my body and perhaps come to some creative conclusion which would
then send my in the proper direction. Great disappointment since Mayo is one of the greatest medical centers in the world. It seems that no one looks at the patient as a whole anymore. We are split into separate pieces and often physicians don't maintain contact with each other which would help solve what's happening. Perhaps I'm just repeating what was said more briefly right before my post. But in the ancient days, internists did this sort of thing. Great strides have been made, but someone needs to think about the whole person. Each disease is not happening on its own. Good luck to all of us with multiple problems.

Jump to this post

In reply to petuniamom567….@migizii…I also tried a few times over the years for this approach to no avail at Mayo, Rochester. I was told I must work with my PCP at my home location, which in my opinion does not serve as useful a purpose when your specialists are there.

REPLY
@kathrynmc

I was seen at Mayo Clinic in Rochester MN in September of this year. I asked my Primary Doctor to call the Mayo Clinic Physicians referral line at 1-800-533-1564 to help get me a referral. My Doctor did this, then I was contacted by Mayo Clinic. I had to set up a Mayo Clinic account, then they sent me forms to fill out online to determine whether or not they would take my case. This was at the end of June, so it took three months to get my appointment, and I am grateful to been seen at Mayo, it is an amazing place. Kathryn

Jump to this post

In reply to @kathrynmc …. @migizi….I have never attempted going through my PCP for a primary care referral at Mayo….May I ask if you have extremely complicated issues you are seen there for, given my prior refusals (although I never tried going through my primary). Thx!

REPLY
Please sign in or register to post a reply.
  Request Appointment