Maiysa Posted March 4, 2012 Report Share Posted March 4, 2012 I finally got into see a hematologist and he diagnosed me with mast cell activation and says it is systemic, but thankfully NOT the leukemia type. I would never have never checked into this had it not been for everyone on here encouraging me to see a specialist. I was not aware of this disorder. So thank you all very much. What a life saver!!!! The mast cell forum was also able to find me a doctor in my area. So I'm so grateful for their blog as well. As a matter of fact this blog has had two compliments. My neuro told me that she sometimes visits these blogs and always finds good information. So that's a pat on the back for you all and the moderators! Also, I went to the allergist in November, which I was encouraged by some of the people on this site to ask for a tryptase test. Thankfully I finally got one after much drama, and my tryptase was elevated at 11 on a normal scale of 1-10, but the allergist told me not to worry about it, it meant nothing. But when I mentioned it on this blog many of you told me that this didn't sound like a correct response. I was too tired to deal with it but got a few serious messages from others on here and the mast cell blog to find another doctor. I got very lucky and found one locally. That was a miracle. He is a hematologist and very compassionate. He knew I had it right away from the tryptase and symptoms and took 11 tubes of blood. (I'm so tired) But he said we will know more in two weeks and asked how I felt about a bone marrow. So will see in 2 weeks whether or not that is necessary. I hope not! The hematologist asked why I got a tryptase test in the first place and I told him about this blog and how I was encouraged to get one. He asked what the allergist said about the elevated tryptase. I told him that he said it was nothing to worry about. I told him that people on the dysautonomia and mast cell blog said that it wasn't right and to find another doctor. He shook his head and said, well your doctor was off the mark, you do have mast cell. It's so sad that people on this blog know more about this condition than a doctor. So thanks to everyone for your help. This hematologist says that he thinks the mast cell is the catalyst to the valley fever, the thyroid cancer and toxic thyroid, and autonomic neuropathy and orthostatic intolerance. But wants to do some more tests to see where we are at with the mast cell before he says too much. IT's probably systemic, but not the leukemia type. So that's a huge blessing. So grateful. He also said he might be able to medicate me to make me feel a bit better and have a better quality of life. I told him the last doctor told me this, and by the second appointment of finding nothing he was done with me. This doctor said, well, I'm your guy, so hang in there and I will figure this out and he gave me a low high five. Haha- Sweet guy. Thank God!!Thank you all for listening!Good health to allMaiysa Quote Link to comment Share on other sites More sharing options...
sue1234 Posted March 4, 2012 Report Share Posted March 4, 2012 That is great!! (the great doctor part, not having another health issue!) Quote Link to comment Share on other sites More sharing options...
songcanary Posted March 4, 2012 Report Share Posted March 4, 2012 Absolutely thrilled for you to have found such a kind doctor. Please keep us posted on your progress! Quote Link to comment Share on other sites More sharing options...
Maiysa Posted March 4, 2012 Author Report Share Posted March 4, 2012 Thank you ladies. Sue that made me laugh....I know what you meant. haha Quote Link to comment Share on other sites More sharing options...
gofl1 Posted March 4, 2012 Report Share Posted March 4, 2012 What were your symptoms that made you think your problems could be related to mast cells? I have had some allergy/skin type issues recently that have made me also consider going for a tryptase test. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted March 4, 2012 Author Report Share Posted March 4, 2012 gofl 1-I truly don't know much about mast cell, only from what other's have told me about and I just got diagnosed yesterday. I do have autonomic neuropathy and orthostatic intolerance so not sure what the difference is in symptoms since they mimic each other a lot. But found out that mast cell can actually trigger my symptoms. But I was having a lot of flushing, and terrible episodes that made me nauseated with blotchy skin and bathroom issues. My blood pressure would stay very high with a racing heart and a fever on occasion. And more than anything I have a constant migraine and lots of strange headaches and body aches. Quote Link to comment Share on other sites More sharing options...
corina Posted March 4, 2012 Report Share Posted March 4, 2012 very happy for you maiysa, and thanks for the compliments!!! Quote Link to comment Share on other sites More sharing options...
Maiysa Posted March 4, 2012 Author Report Share Posted March 4, 2012 Thank you Corina! Quote Link to comment Share on other sites More sharing options...
jrlehnardt Posted March 4, 2012 Report Share Posted March 4, 2012 Where is the mast cell blog forum, iw would be interested as I think I may have problems with mast cells and would like to read more Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted March 5, 2012 Report Share Posted March 5, 2012 That is so great. My immunologist told me that serum testing now shows I have no allergies (save the drug allergies), but I just got my CT scan of sinuses back that shows 'chronic inflammation'. I intend to ask her about mast cell at my appointment this week with this in hand (being done at same university). I don't know why else I would have inflammation. My ANA always comes back normal as do my ESR, lupus tests, etc. My otolaryngologist wrote 'Sicca' on my list of diagnoses (which I looked up--Sjogren's which is autoimmune). I just do not understand but something is happening. I hope she will endulge my questions (she's pretty good to at least let me ask my questions but has her 'methodology' of conducting exams). She's always running some kinds of tests so I know there is a method to her madness. She insists I'm just immunocompromised, but I wonder if that's how the chronic inflammation in the sinuses (without allergies) will be explained to me. I had to undergo series of desensitization 3 different times by allergists but none since the mid 90s (thankfully I'd found the old paper from that allergist showing the things I was allergic to and took it to her at my last appointment so she didn't think I was mistaken). Good health and good luck on this trek.Just adding update: Saw my immunologist Thursday in follow-up and mast cell was on her list of things she'd been intending to look at. She ordered a tryptase test (although I did not feel like I was having any episode at the time, just some skin issues, a little bathroom issue and sinus infection with the CT scan that showed chronic inflammation. I don't look for it to be high but I never would have known to ask (and I did have to ask for her to order). Quote Link to comment Share on other sites More sharing options...
Chaos Posted March 5, 2012 Report Share Posted March 5, 2012 Glad you finally are getting someone to pay attention to you and who is willing to work with you. That's great. Sorry to hear that it's systemic though.It is SO wonderful to have all the various people on here who are willing to give helpful info and encouragement/advice (although NOT medical advice LOL)!! Glad it's helped you Maiysa find some answers as it has helped me. Quote Link to comment Share on other sites More sharing options...
Maiysa Posted March 5, 2012 Author Report Share Posted March 5, 2012 Thank you Chaos. I don't really know what systemic means, except that it might be affecting other organs. I'm hoping it's the mild form of systemic. I hope it's not worse than I'm thinking. But thanks for the support. He thinks it might be what is flaring up the autonomic neuropathy. So to get it under control would be so helpful. Rubytuesday, I'm so sorry, but I don't know much about the disorder and I don't have the sinus issue. I was told that mine has nothing to do with allergies, so I unfortunately didn't understand the allergy connection. Is there supposed to be one? Now, Sjogren's, I know there is a simple test they can do from your mouth. Have you had that done yet? That would confirm or eliminate it. I hope you can get some answers soon! Jrlehnardt, the name of the forum for mast cell is.....mastcelldisorders.wallack.usThey were also very helpful in trying to help people get diagnosed. Have you had a tryptase test yet? It seems to be what helped me to get diagnosed. Let me know if you have any other questions. Maiysa Quote Link to comment Share on other sites More sharing options...
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