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Peggy H: Undiagnosed MCTD?

Finding this place has been so helpful.

Purple Rain for Peggy by Shelley Ensz I have been told for twenty years that I might have mixed connective tissue disease (MCTD), but I have not been definitely diagnosed. I am sure all of you know what I mean. After going for so many tests and endless appointments, I decided it was just something that I would have to live with. I always tested with positive antinuclear antibodies (ANA). Some doctors thought I had lupus.

I am going to list some symptoms and I wish someone would please respond. I have had serious problems with swallowing and had my esophagus stretched and webs and scar tissue removed many times.

I am almost worried to death about memory loss, and being confused. I used to run a business doing all the payroll, tax records, etc. for thirty-five years, and now I cannot remember what I did yesterday or even this morning. All I can say is, "I cannot remember." I have also forgotten how to spell.

Last year I had pneumonia that seemed to hang on forever. Other symptoms are severe esophagus damage; no muscles function in the esophagus; tinnitus, dry eyes, dry and small mouth, hair loss, joint and muscle aches, cold hands and feet. I am either cold or sometimes I feel like my flesh is on fire.

I have swelling of both hands and feet. My hands are curling under just a little. My hands are a darker color and I have some lumps and thickening of the skin in my palms and toes. I have little sores on my fingers, right behind the nails. My hands also get numb. I cannot use my hand and drop things often. I cannot open lids or write well. I have lumps behind my elbow, in the palm of my hands and on the soles of my feet. The bottom of my feet burn. I also have thyroid problems.

I have lost all my gums and upper jaw bone. My dentures are built up and they fit right below my sinus bones. I have had depression for years, and irritable bowel syndrome (IBS) for a long time. I have been diabetic for twenty-seven years. Well, those are most of my symptoms.

I guess people think I am falling apart and sometimes I wonder if that is true. What I am afraid of is going to the rheumatologist and he tells me that he does not know what is wrong. That means I will come back home to wonder some more. I know there must be many more of you that can identify with that experience. I have an appointment at the end of this month with a rheumatologist, so I am hoping to finally get some answers. I can hardly stand the thought of going through all the things I went through before.

Sorry for such a long letter. I do not talk to many people about this and there are so many things I want to know. Finding this place has been so helpful. I hope to hear from someone soon. I am a sixty-two-year-old woman hoping for some answers. I just hope that someone will be so kind to take the time to answer some of my questions. Thanks again.

To Contact the Author

Peggy H.
New email address needed 7-13-03
Old Email Prefix: peggysuetwo2002
Story submitted 5-9-02
Story posted 5-25-02
Story edited 7-13-03 SLE

Story Artist: Shelley Ensz
Antinuclear Antibodies (ANA)
Cold Hands and Feet (Raynaud's)
Dental Involvement
Diabetes Stories
Dry Eyes
Ear Involvement (Tinnitus)
Esophagus Stretched
Hair Loss (Alopecia)
Hands Curling Under (Sclerodactyly)
Irritable Bowel Syndrome (IBS)
Joint and Muscle
Mixed Connective Tissue Disease (MCTD)
Small Mouth (Microstomia)

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Peky: Sjogren's and Hashimoto's Thyroiditis

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)