1. < Autoimmune Diseases

Connective tissue auto immune

Posted by wottone @wottone, Sep 28, 2017

I was undiagnosed for ten years. Aches and pains, eye issues , major heart burn , rashes, extreme fatigue. Finally saw a different neurologist and skin doctor and they diagnosed connective tissue auto immune. Have completely change my diet and gone grain free. I am now starting to feel less tired and rashes have disappeared. Anyone else got diet suggestions ??

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

Mentor
Jim, Volunteer Mentor | @jimhd | Dec 29, 2017
In reply to @kanaazpereira "Hi @wottone, I'd like to add my welcome to John's, and also encourage you to view..." + (show)
@kanaazpereira

Hi @wottone,

I'd like to add my welcome to John's, and also encourage you to view these discussions, related to your symptoms and diet concerns, on Connect:
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I'd also like to introduce you to a few active members talking about connective tissue disorders. Please meet @jewel8888 @luladavis @regeanna @faithandlove @jimmorris900 @judeeo @lisaann03. I hope they can share their experiences with respect to diet. @lighthouseceliac, since you've shared some great insights about diet and health on Connect, do you have any suggestions for @wottone?

In the meantime, here's some information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@wottone, there are so many connective tissue disorders, and many overlap, so it's not an easy diagnosis by any means. May I ask, if you've had a large blood panel done to pinpoint possible conditions?

Jump to this post

@reagan1mc

It must have been really frightening to find yourself paralyzed. How fortunate that you have personal medical access.

I don't know what mctd is, but I'm going to look it up.

I wish you well as you find out what's next.

Jim

REPLY
reagan1mc | @reagan1mc | Dec 29, 2017
In reply to @kanaazpereira "Hi @wottone, I'd like to add my welcome to John's, and also encourage you to view..." + (show)
@kanaazpereira

Hi @wottone,

I'd like to add my welcome to John's, and also encourage you to view these discussions, related to your symptoms and diet concerns, on Connect:
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I'd also like to introduce you to a few active members talking about connective tissue disorders. Please meet @jewel8888 @luladavis @regeanna @faithandlove @jimmorris900 @judeeo @lisaann03. I hope they can share their experiences with respect to diet. @lighthouseceliac, since you've shared some great insights about diet and health on Connect, do you have any suggestions for @wottone?

In the meantime, here's some information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@wottone, there are so many connective tissue disorders, and many overlap, so it's not an easy diagnosis by any means. May I ask, if you've had a large blood panel done to pinpoint possible conditions?

Jump to this post

Thank you for the welcome... I have so much to learn about this disease that I will be spending a lot of time here on this site reading and listening to your stories.... I know at first the were saying PMR then my latest labs came back with MCTD on the report, I suspect because of the antibodies found....

I am seeing this whole ordeal as a blessing in disguise and I am floating around on a wonderful feeling of gratitude for being alive and being able to stand under my own power...

No matter what comes next, I will face it without the fear that tried grabbing my mind and my emotions, I reject that path completely....

REPLY
peach414144 | @peach414144 | Dec 29, 2017
In reply to @kanaazpereira "Hi @wottone, I'd like to add my welcome to John's, and also encourage you to view..." + (show)
@kanaazpereira

Hi @wottone,

I'd like to add my welcome to John's, and also encourage you to view these discussions, related to your symptoms and diet concerns, on Connect:
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I'd also like to introduce you to a few active members talking about connective tissue disorders. Please meet @jewel8888 @luladavis @regeanna @faithandlove @jimmorris900 @judeeo @lisaann03. I hope they can share their experiences with respect to diet. @lighthouseceliac, since you've shared some great insights about diet and health on Connect, do you have any suggestions for @wottone?

In the meantime, here's some information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@wottone, there are so many connective tissue disorders, and many overlap, so it's not an easy diagnosis by any means. May I ask, if you've had a large blood panel done to pinpoint possible conditions?

Jump to this post

yes, you are right"take care of the little things" i have so many, many illnesses so that when: the pointer finger on my right hand (i am a rightie) cannot be used everything comes to a halt. address this issue first, let everything else go. help me world, this little thing takes over and makes me a basket case. but i keep going on. now the finger is misshapen and it hurts. BUT REMEMBER: I HAVE NINE OTHER FINGERS. i will learn, i will persevere. there is still so much more living to do. perhaps i can help another living being or creature which is a wonderful, wonderful feeling. joy to the world.

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Dec 29, 2017
In reply to @kanaazpereira "Hi @wottone, I'd like to add my welcome to John's, and also encourage you to view..." + (show)
@kanaazpereira

Hi @wottone,

I'd like to add my welcome to John's, and also encourage you to view these discussions, related to your symptoms and diet concerns, on Connect:
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I'd also like to introduce you to a few active members talking about connective tissue disorders. Please meet @jewel8888 @luladavis @regeanna @faithandlove @jimmorris900 @judeeo @lisaann03. I hope they can share their experiences with respect to diet. @lighthouseceliac, since you've shared some great insights about diet and health on Connect, do you have any suggestions for @wottone?

In the meantime, here's some information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@wottone, there are so many connective tissue disorders, and many overlap, so it's not an easy diagnosis by any means. May I ask, if you've had a large blood panel done to pinpoint possible conditions?

Jump to this post

@peach414144

I really appreciate your attitude. You're a blessing.

Jim

REPLY
reagan1mc | @reagan1mc | Dec 29, 2017
In reply to @kanaazpereira "Hi @wottone, I'd like to add my welcome to John's, and also encourage you to view..." + (show)
@kanaazpereira

Hi @wottone,

I'd like to add my welcome to John's, and also encourage you to view these discussions, related to your symptoms and diet concerns, on Connect:
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/
– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– MCTD (Mixed Connective Tissue Disease): https://connect.mayoclinic.org/discussion/mctd-mixed-connective-tissue-disease/

I'd also like to introduce you to a few active members talking about connective tissue disorders. Please meet @jewel8888 @luladavis @regeanna @faithandlove @jimmorris900 @judeeo @lisaann03. I hope they can share their experiences with respect to diet. @lighthouseceliac, since you've shared some great insights about diet and health on Connect, do you have any suggestions for @wottone?

In the meantime, here's some information about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@wottone, there are so many connective tissue disorders, and many overlap, so it's not an easy diagnosis by any means. May I ask, if you've had a large blood panel done to pinpoint possible conditions?

Jump to this post

Thank you for your kind words.... I think the Irish in me will not allow me to "Go quietly into the night and I will heed Dylan Thomas' advice and "Will rage against the dying of the light"... I watched Planet Earth part II and saw how life engages in this constant battle for survival on all levels.... I can do no less myself....

REPLY
View MoreView Less
Please sign in or register to post a reply.