Suggest Treatment For Systematic Mastocytosis Causing Severe Pain

Hi, may I answer your health queries right now ? Please type your query here...I have had systemic mastocytosis for approx. 6 or 8 years.
I am in pain with every single breath (severe).I have been to Ohio State, The James Hosp. It is the same thing everytime I went....travelled all that way with hope in my very soul, that each day would not be wasted. I have had so many bone marrows--one oncologist I had gone to, tried doing one on me and it just about killed me, it was so painful. I asked her why did she do that! She told me she didn't get what she wanted and she went right into doing another bone morrow on me. I swear to God I wonder where they get these (so called) doctors or specialists! One oncologist had the nerve to tell me I didn't have "Systemic" mastocytosis. He said his mother had "mastocytosis" and she was doing wonderfully.I told him the difference between the two and he wouldn't hear of it. I then find "another" oncologist. He knew nothing about Systemic Mastocytosis. I asked him very politely, if he would like some of my literature about this disease , that I had surfed and surfed on this subject and he could read it at his option. His reply was I don't have time to read anything. In my way of thinking, I would want to know about something and stop pretending you do. They give you so many tests and reorder tests after tests after tests. There have been many times that I have had to request certain tests for myself from my doctor. I still have it, I know not what to do. I am in severe pain, as we speak. My left side of my body from the top of my head down the middle, across my should, down the left arm, the left legal in all my bones and goes down the calf and my feet spasm constantly. The right side is doing the same.
The same doctor that didn't want my papers to read, had me on Zofran and it worked wonderfully and he wanted to give me some generic. I told him that I only wanted the brand name Zofran-he informed me it would be cheaper and I "might" be able to take it. But I in turn told him, "Why try to fix something when it isn't even broke". I told him we have worked all our lives and the last part of my life give me what works for me, not the other because it costs him more in taxes and he pays more this and more that and if the truth be known, someone is giving him a big chunck of change to push this over medicine he wanted to give me. He was very peppy and sarcastic with me. God forbid if he would have to get a cheaper pair of shoes or silk ties etc. Well, I told him if he though anything of his patients, "HE WOULD DO WHAT THE PATIENTS NEED"! WE are the patients going through pure hell,NOT him. I told him if that is how he is going to treat me, like a poor animal, he will never talk to me and treat me as such and I walked out! I am now looking, once again, for a new oncologist, a new family doctor( she left her practice) and she went elsewhere. I have gone to the pain clinic twice...I knew nothing about a pain clinic. after several months, "someone" came into the waiting room and two big guys who scared me, I didn't even know who they were. They slid me into a chair up to a long table, but I just stayed in my chair and they put my head on the table, without a word. That is when I was getting scared. I asked them what they were doing. They told me they were told to give me a shot in the head. Can you imgine that scenario!!!!!! I am sure I could talk to you more, but I need to rest. Thank you for listening. I just got out of the hospital from a brain hemorrage If I had no bad luck, I would have no luck at all. I am now in need of cataract surgery in both eyes. Not looking forward to that! I do have a cancer doctor, who has had to do extensive work on my leg, face, nose all due to cancer. also cancer on my leg. he had to turn my nose around - he also had to cut in half with a pathologist present..I could write a book...smiling....Thanx once again for listening and stay save and keep smiling..I am 71 years young haha....5'1 or 2 - I could have shrunk...with me, you never know. lol I weighed while in the hospital from the brain hemorrage 110, since I have been home, I weigh 140. I have no idea why the weight gain. I have always been a tiny lady. It seems to me when my legs had swollen soooo bad, I went to the hospital ER, I had blook clots and one went up to my stomach and one heading to my lungs. They admitted right then and I was in the hospital for days. The gaining of weight..this may be something different, but I wear size 2 to 4 clothes.