I agree with your family doctor Kim!!!   You need to also speak with Dr. Afrin.    Just because MCAS is not known to invade tissues, it doesn´t mean that you are not having DAMAGE due to the mediators themselves! From what we are seeing of our cases, the mediators can target to certain areas of the body to cause inflammation.   That inflammation is damage.   With my case the inflammation is generalized but in one of my son´s cases his are targeted at the connective tissues and he has damage in one of his shoulder tendons and without a doubt this is due to his autoimmune form of masto.  

So, I do think your doctor is correct and you need to have the hematologist as well as Dr. Afrin involved in this.  Dr. Afrin is aware of this targeted inflammatory response and he needs to know about what is going on so that he can give instructions to your oncologist as to what needs to be seen and how.  He will know what techniques need to be taken to see this better.


Lisa

btw - not to make your husband sound bad, he´s not acting wrongly and in a normal person your husband´s thoughts are appropriate.  However, masto is not an ordinary disease and it´s very confusing to doctors.   Your doctor is correct in recognizing that the masto may have a role here.  I mean who ever would have guessed my masto had a role in my aortic aneurysm and where it would take us?   My angiologist certainly did not and she was the doctor responsible for my aneurysm!!!!   it was her area!    So, your doctor is right on the money!!!   Trust his opinion, Kim!

Thanks, ladies for your input. I have to be honest and say that I don't blame my family doctor for suggesting I see the oncologist. That particular visit to my family doc was the first time he learned from me that I have MCAD and he has had NO time to read, research or figure out anything as to treating me for anything. However, I'm SO grateful to have learned that even my hip issue could possibly be related to Mast Cell. I'm fairly sure that my oncologist will not know that.
As for contacting Afrin, I am going to wait to see if he contacts Afrin himself first. I just learned from Afrin last week that he has not heard back from this oncologist and I feel it is important that the oncologist work WITH Afrin in treating me. If he is not going to do this then I am going to attempt to find another doctor who will.
So again, thank you very much for both your input. Oh and Deborah, don't think that I'm blowing your suggestion off. I am going to also give my family doctor a chance to do some checking and learning himself and same for him. If he doesn't then I will look for a new one.
Have a great week ladies!
Kim

Hi Kim,
I just wanted to tell you that I have that same type of pain and i sucks LOL... In the early morning especially, my right hip threatens to collapse and I walk like a china doll until the meds kick in and I feel the swelling has gone down in the joint. I also have that pain in both shoulder blades and L4 L5 level in my back. Im also diabetic and now am having trouble with neuropathy in both feet, grrrrr....

Please expect an wray may come out ok because the mast cells are causing swelling in the joint which presses on nerves and that isnt usually seen in an xray--at least mine isnt... Yes contact your masto DR and let him do what is necessary for your pain to lessen.

I take Singulair for swelling, raise the level of Allegra and use cold pack and Vicodan, thats how I get through it, I wish you much luck to feel better again.
Hugs
Ramona

Doc just called with MRI RESULTS. i broke my right hip! I'm shocked!!!! I've been telling everyone I didn't expect them to find anything and that it was probably another weird mast cell issue. Just goes to show you that it IS important to get all your symptoms checked out!

Awww Lynda your concern is sweet and appreciated. Let me get through Thanksgiving dinner tomorrow and then I PROMISE I will take it easy. I go in on Monday to see an orthopedic doc. So I will see what he says. Also I've decided to email Dr. Afrin to inform him and ask him if he thinks mast cell's could be behind this mysterious break in my hip. With the holidays I don't expect the usual quick response from him and possibly not before I see the orthopedic doc so I'm going to take Dr Afrin's contact information with me and ask this doc on Monday to contact Dr. Afrin. I think that's a decent plan.
I just told my husband that while I was cutting up fruits tonight for the fruit salad I was thinking, "I'm a tough cookie! I've been a real trooper the past 12 days with this hip pain. I haven't complained and I've been fairly active (well being that active was not necessarily a good thing).
You are so on the money Lynda. It is a shame that having this Mast Cell disorder and the daily, chronic pain that comes with it (since I'm MOST DEFINITLY NOT on the right mix of medications yet) can be so overwhelming that pain from breaking a hip is just another 'tick' to add to the mass of other symptoms going on. I do have to add that having this mast cell thing has made me tougher! I don't think 5 years ago, had I broke my hip, would I have been so tough about it
I hope you have a great Thanksgiving Holiday and that everyone else does as well. Happy (but careful and safe) eating and hopefully enjoying family and/or friends!!!
Kim