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Francia: Undiagnosed

Sometimes it seems like my brain is crackling and crunching inside.

Hello everybody. Thank goodness I found this place. I feel close to all the people's stories that I have read.

I don't know what to do. I am feeling really weak and it is too much to handle. I have a lot of pain in the back of my neck and problems with my throat when I eat. My throat even makes crackling sounds. I am even scared to eat so I just eat soups and things like that.

Sometimes it seems like my brain is crackling and crunching inside.

The doctors can't find what is wrong. They told me that I have a micro vascular disease and the signals from my brain are not working properly. But I don't understand.

My last doctor was kind of mean when I tried to ask a question about it. He answered, "You are a somatic and that makes you feel really bad and depressed."

My sister tells me to look for help from someone that feels like me and you can find out what this is.

Please help me. I have two wonderful sons and I love them very much and I hope I can be with them for more time. My husband supports me more than anything and he loves me so much.

Thank you for everything and bless you.

Webmaster's Note: Francia, please keep in mind I have no medical training at all, and that I may be wrong (I often am!). I would like you to please look up information on Eustacian Tube Dysfunction and TMJ (temporo-mandibular joint dysfunction.)

Both of these are treatable disorders, which often occur together, and which may be the cause of your symptoms. By "somatic" your doctor is trying to tell you that stress (but not hypochondria or malingering; he is saying you are not faking or imagining this) is causing your symptoms, but not actual physical illness.

However, it sounds to me as though you may likely have a real, and treatable, medical condition and that the worry over what is causing these symptoms is probably (and understandably) dragging you down. That worry and depression will very likely evaporate once you understand the cause of your symptoms and have a treatment plan established, but if it doesn't, then be sure to also ask your doctor for treatment for anxiety and depression since they can be very disabling, just in themselves.

The crackling sounds in your throat could easily be coming from your ears (eustacian tubes), and your neck pain might be emanating from your jaws (temporo-manidibular). You may want to print this story out, and take it with you to consult a new doctor, and ask for a referral to an ENT (ears-nose-throat) doctor who is experienced with TMJ disorders. And please let us know how this turns out.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith 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!

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.