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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 ??

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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)
Profile picture for Kanaaz Pereira, Connect Moderator @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?

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@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
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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)
Profile picture for Kanaaz Pereira, Connect Moderator @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
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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)
Profile picture for Kanaaz Pereira, Connect Moderator @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
Profile picture for Jim, Volunteer Mentor
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)
Profile picture for Kanaaz Pereira, Connect Moderator @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
Profile picture for reagan1mc
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)
Profile picture for Kanaaz Pereira, Connect Moderator @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....

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