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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?
Replies to "Hi @wottone, I'd like to add my welcome to John's, and also encourage you to view..."
@reagan1mc Hi, Reagan. First, Welcome. 2nd, You have bought a tough one. MCCD is one of those that is typically mis-diagnosed or missed as the lab or MD just scoots on by, looking for something they know about. Besides that, there is a huge confusion on the matter of what is MCCD and what is Amyloidosis, Most of the online pages say MCCD is "like" Lupus or Crohn's or hATTRwt or something else, although most of the big labs now speak of MCCD as the beginning stages of Amyloidosis, and that many folks move through stages from MCCD to some form of Amy, SUCH AS... Lupus, Crohn's, ...... So the confusion in these descriptions and diagnoses is profound. If you read the stuff on the Mayo, Stanford, Wikipedia etc. labs, then read the MCCD You will probably think they are about the same disorder. And I think you will be right. There is a great book by Dr. Morey Gertz, of Mayo, Amyloidosis Diagnosis and Treatment, available from Amazon and others, that actually calls MCCD a mutation of Amyloidosis, and calls Amy a Connective Tissue Disorder. I say this because you will find that you will be treated the same. There are over 1000 mutations of the diseases, probably 2,000 actually. I was on Prednisone for mine, and it had no effect other than to make me sick like a hungover dog. Anyway, hang in there. I am not dead yet, and I have about 15 family members with various mutations of this stuff. You can live until you die of old age or a marathon swim. Just always take care of the little things that come along, like AFib, liver, kidney, spleen, brain, etc. And read my story at https://bit.Ly/1w7j4j8 Good to hear from you.
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
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....
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.
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....
Connect
My name is Reagan and I have been diagnosed with "Mixed Connective Tissue Disease"
I went to take a nap 4 weeks ago and woke up paralyzed and unable to do anything but crawl to the front door to let the medics in to take me to the ER... my girlfriend is a MD and she suggested a high dosage of Prednisone 80mg for 3days then down to 60... I am now at taking 5mg and by Monday I will stop....
This course of action has allowed me to recover with full mobility..... she is not my Doctor for ethical reasons.... but I value her fine mind along with the 35 years as a doctor...
I am not sure what is coming next, but I have prepared myself by rejecting the fear that first overwhelmed me....