The story of Adriana
Nu tin minte cand a inceput. Cu siguranta acum cativa ani.
Dureri abdominale, cu stari de voma si deranjamente de stomac… semanau foarte bine cu indigestia. Doar ca se repetau cam la 3-4 saptamani, cu dureri mari de burta si de articulatii de torace. Am amanat vreo doi ani a merg la doctor, dand vina mereu pe ce am mancat. Asa am renuntat la dulciuri, am pierdut vreo 10 kg, dar tot nu au disparut aceste manifestari gastro periodice. Pana la urma am ajuns la un medic specialist si in urma unui ecografii s-a descoperit splenomegalie.
A durat ceva timp pana am ajuns la un hematolog care m-a ascultat, care a inteles ca nu doresc sa imi scot splina inainte de a avea un diagnostic.
Dar durerile abdominal nu dispareau. Periodic isi faceau simtita prezenta, cu dureri mari, ce tineau cam 24 de ore. Pana cand intr-o noapte mi sa umflat limba atat de mult incat m-am trezit din somn cu problem de respiratie. Am chemat salvarea… din pacate tratamentul loc nu a avut efect. Asa au inceput si episoadele de inflamare a limbii, pe langa durerile abdominale.
Tot gandindu-ma c e ar putea fi, discutand si cu medicii, mi-am adus aminte de prezentarile unui medic care se ocupa de persoane cu angioedem. Daca am si eu asa ceva? Cu tot scepticismul, medical a acceptat sa fac analize specific. Si ce sa vezi??? Au iesit foarte proaste, valorile C1 esteraza si C4 iesind extrem de mici. Bun. Pana aici s-au lamurit lucrurile si am primit diagnosticul de angioedem dobandit.
Mai departe, sa vedem ce e cu spilina… Tot cu ajutorul medicului am beneficiat de o analiza speciala, efectuata in Italia, si s-a confirmat suspiciunea de limfom non-Hodking, angieodemul dobandit fiind un simptom extreme de rar de limfom.
Toate astea pe langa faptul ca am inca o boala rara, miastenia gravis, de mai bine de 30 de ani.
Asta este pe scurt, povestea mea cu o boala extreme de rara, angioedemul dobandit.
Multumesc ca mi-ati citit povestea si va doresc sanatate tuturor!
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I don’t remember when it started. Definitely a few years ago.
Abdominal pain, with vomiting and upset stomach… looked very much like indigestion. They only repeated at about 3-4 weeks, with severe pain in the abdomen and chest. I postponed going to the doctor for about two years, always blaming what I ate. That’s how I gave up sweets, I lost about 10 kg, but these gastro-periodic manifestations still haven’t disappeared. Eventually I went to a specialist and after an ultrasound a splenomegaly was discovered.
It took me a while to get to a hematologist who listened to me and understood that I didn’t want to have my spleen removed before I had a diagnosis.
But the abdominal pain did not go away. Periodically they felt their presence, with great pain, which lasted about 24 hours. Until one night my tongue swelled so much that I woke up with trouble breathing. I called the rescue… unfortunately the place treatment had no effect. This is how the episodes of inflammation of the tongue began, in addition to abdominal pain.
While thinking about what it might be like, talking to the doctors, I remembered the presentations of a doctor who treats people with angioedema. What if I have something like that? Despite all the skepticism, the doctor agreed to perform specific tests. And what to see ??? They came out very bad, the values ​​of C1 esterase and C4 coming out extremely low. Good. So far, things have been clarified and I have been diagnosed with acquired angioedema.
Next, let’s see what is with spillin… Also with the help of the doctor I benefited from a special analysis, performed in Italy, and the suspicion of non-Hodking lymphoma was confirmed, the acquired angioedema being an extremely rare symptom of lymphoma.
All this in addition to the fact that I still have a rare disease, myasthenia gravis, for more than 30 years.
In brief, this is my story with an extremely rare disease, acquired angioedema.
Thank you for reading my story and I wish you all health!