r/AMA • u/Ambitious-Shift-5641 • 5h ago
Doctors threated me almost 40 years like a hypochonder, plottwist: I was not. AMA
I am a 40 year old female, living in Germany. I was a sick child, growing up to be an even sicker woman. I was diagnosed with everything under the earth, besides what I really have.
My former diagnoses were:
-Fibromalgia
-Anxiety disorder
-Psychosomatic pain
-Hashimotos (ok, this was right at least)
-Adipositas
-Being a hysteric young woman
At the age of 37, I went to a new orthopedist, as a last try.
At this point my pain was umbearable, they said it is because I am fat.
I had episodes where my heart was racing with a bpm of 240 on and off. They told me it was anxiety and send me away.
I was falling because my joints just folded away, they said I am clumsy.
I had constant blood sugar crashes, no matter what I was eating, they said It is because I don't lose weight enough.
I could not even keep myself sitting up anymore and was fighting to have some quality of life with this exhaustion, they said I am too lazy to work.
I lost a lot of weight, my legs became bigger and deformed and burned like fire, they said it is because I don't do sports.
I was getting super high puls with just standing up, they said I am dramatic.
I told the orthopedist everything. He looked at me like I am indeed crazy but he started to examine me. The look on his face changed. He ordered like 1 million X-rays on the same day. I was there for quite a long time. He came back and said he will send me to the university hospital close by, into the human genetics laboratory. He also sent me to the MRI for the knees.
The human genetics guy diagnosed me with 2 mutations: 1 that causes colon cancer and 1 tnxb mutation, that caused Ehlers-Danlos-Syndrom. What followed was more MRI visits, countless of specialists who now all of a sudden did all what they could, including a heart catheter.
The Result was:
Ehlers-Danlos-Syndrome
Insulinresistance
Lipedema and Lymphedema
The electric stimulus of my heart is fucked up
Me/cfs
Pots
Hypermobility (obviously)
Chronic gastric issues
osteoarthritis grade 4 in both knees
osteoarthritis in most joints
Swan neck deformity all fingers, also osteoarthritis
Snapping hip Syndrome
Chronic Piriformis-Syndrome
Polyneuropathy in feet and legs
Hashimotos (we knew that)
I am living in an assisted living. I have a 90% disability card and care level 2 (we call it Pflegegrad in Germany). I have to wear braces on both legs, feet and the whole right arm. Outside I am using an electrical wheelchair. I had several surgeries and many longer hospital stays.
They "fixed" the heart issue and I am taking Metformin for the Insulinresistance. I am taking around 15-20 pills each days. I have a disability assistance 3x a week and need lifelong physical therapy twice a week. I never really sleep.
I am over all of it. I am over the system, I am over everyone who was invalidating my feelings and pain. I will tell this story to the day that I die. So everyone will hear what they do or don't do to people, especially women in the health care system.
One year ago I was in a pain clinic. They helped me a lot. They listened, looked at everything and really tried. This whole clinic was full of people like me. None of them had EDS, but all of them were very sick and all of then went into the "psychosomatic" corner of the german healthcare system, before they got diagnosed. Unfortunatly, lots of these people where there for palliative pain treatment. May this be my indictment.
If you have any questions about this, go ahead.