Hey guys,
Have been living with EM since 6 months now. My EM was quickly progressive and has become severe. I also have autonomic and some other kind of neuropathies as well as a severe and rare digestive disease.
Like many of you, i havent found any pain drug that works and i am also extremely Limited in options due to my allergies and other conditions.
I have just had major surgery to temove a mediastinal mass which was thought to have possibly caused a paraneoplastic sydrone. I know that EM can be a paraneoplastic syndrome as well.
Dring the surgery and the days afterwards my EM was almost gone, and i first thought that removal of the mass was the cause. However, when they stopped the heparin infusions my EM reoccured. Its still too early to tell if removal of the hyperplastic thymus will improve some of my neurological symptoms, but in any case there seems to be more going on. I do have elevated Tumor markers and some other abnormal blood work possibly indicating a neuroendocrine tumor (which we hoped the mediastinal mass would be, but so far, pathology only states thymic hyperplasia which is offen associated with autoimmune issues - BTW i was investigated multiple times for myasthenia gravis and the symptoms don’t fit and ebery blood test came back negative) . So they think that i may have paraneoplastic syndrome, just the tumor has not been found yet and the thymic hyperplasia could have been developed secondary to the autoimmunity caused by the occult tumor.
I always read that secondary EM is mostly due to myeloproliferative diseases, e.g. polycythemia. My blood work was normal in this regard but i just found out that i have chronic low grade bleeding from my bowels which may mask the increase of hb and hk associated with polycythemia. I also read that improvement by blood tHinning agents usuelle indicates EM secondary to blood issues.In fact, i have huge problems with vasospasms and blood clotting sometimes making it impossible to draw blood.
So what do you thinK about this? I don’t tolerante aspirin any more and i think that it did not help with thE EM the last time i took it. I have had abnormal blood test results which may point towards a pheochromocytoma and i was excited to read that EM can occur in this setting secondary to polycythemia or blood clotting indices by high catecholamines.
Sorry for the length but i just need to get input from the experts.
Sarah