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Hello everyone! I just decided to introduce me here as well. I hope you could to help with some advice, I really need it now.
I am from very East part- Russia, Saint-Petersburg. I have aggressive MCAS. Last year I am trying to survive from reaction to REALLY EVERYTHING (even from all drugs which usually tread it - like antihistamines, steroids and others).
In my others disease I have an aplastic anemia (I don't have a bone marrow - a biopsy shows just 5%), a secondary immune deficiency and of course ME/CFS (triggers are active viruses). Since 5 years ago. Lucky I am still alive. But I am in a dead point 1 year already because of aggressive MCAS.
Because of language barrier its very hard for me to reed all your posts guys. I apologize for my English as well, hopefully you will understand me right.
So, believe me.. you are lucky.. In Russian no one doctor knows MCAS. All researching going on in US..
I am in point to try or Ritux or Gleevec.. I don't know that is better, because I have an active bacterial and viruses infections now, which I cant stop successfully. So probably a both medicines is very bad way in this situation. But what can I do. And I am not sure I will tolerate a reaction even from a process, because it really to everything.. reaction even from water sometimes
So I will so appreciate if you could to share your thoughts - thats better to try?
I had one doctor in US - he recommended Gleevec, because sometimes it shows a good result..
Also I am thinking I have a mutation for MCAS (I thought before I don't). I will know it for sure in 2 weeks. But I already found a highest level of Aspartic acid and Valine in blood and urine. Only that abnormal there. Pretty strange, and this is a direct correlation with mutation. So I will do a test to check it for sure.
Thank you so much for attention guys!
I so hope to hear your opinions and recommendations!!
I am from very East part- Russia, Saint-Petersburg. I have aggressive MCAS. Last year I am trying to survive from reaction to REALLY EVERYTHING (even from all drugs which usually tread it - like antihistamines, steroids and others).
In my others disease I have an aplastic anemia (I don't have a bone marrow - a biopsy shows just 5%), a secondary immune deficiency and of course ME/CFS (triggers are active viruses). Since 5 years ago. Lucky I am still alive. But I am in a dead point 1 year already because of aggressive MCAS.
Because of language barrier its very hard for me to reed all your posts guys. I apologize for my English as well, hopefully you will understand me right.
So, believe me.. you are lucky.. In Russian no one doctor knows MCAS. All researching going on in US..
I am in point to try or Ritux or Gleevec.. I don't know that is better, because I have an active bacterial and viruses infections now, which I cant stop successfully. So probably a both medicines is very bad way in this situation. But what can I do. And I am not sure I will tolerate a reaction even from a process, because it really to everything.. reaction even from water sometimes
So I will so appreciate if you could to share your thoughts - thats better to try?
I had one doctor in US - he recommended Gleevec, because sometimes it shows a good result..
Also I am thinking I have a mutation for MCAS (I thought before I don't). I will know it for sure in 2 weeks. But I already found a highest level of Aspartic acid and Valine in blood and urine. Only that abnormal there. Pretty strange, and this is a direct correlation with mutation. So I will do a test to check it for sure.
Thank you so much for attention guys!
I so hope to hear your opinions and recommendations!!