I had my appt with my primary today--the ARNP who does most of my healthcare. He got the point pretty quickly that Im not as interested in NIH now since Dr Hejdenberg is offering me the clinical trials with the drug I wanted to try. It seems the primary isnt much interested in me if he cant put NIH on his resume. He was really nasty.

I only get appts with him every 4 months so when I see him, I have alot to tell him. I try to shorten it, tell him what happened since I saw him last. 17 abnormal labs and the report of the anterior infarct.  He wasnt the least interested, said "What do you want me to do about this?" I was in shock... terrible medical care.

Dr L sent a report to him and literally lied about what happened with my last visit--where he said I didnt have a masto rash, I had hives instead. His report says he told me I did not have hives. He also mentioned the BMB to be done soon.

I told my primary that I postponed it---that Dr L didnt understand or care for the correct protocal "I'll do it MY way or not at all," and I needed it done correctly. My primary was yelling at me, how he referred me to him (He didnt I found him), and I wasnt cooperating with my care. I kept trying to tell him about Dr Hejdenberg and the difference in a true expert.  He continued to yell at me and said "What do you want? Im busy."

I trully felt he had the attitude there is nothing wrong with me and Im not cooperating with any medical care. Im positive I will get a letter from him within the week to "fire me" as his patient. Ive seen his office do it to many other people, including both of my sisters.  He will get a surprise if he does it to me. I will agree that we should part ways but I will tell him that until I can find a DR to replace him, I expect all my care and meds as usual or I will sue for medical abandonment.

The ONLY reason I stayed with him is because of my pain meds.. I cant make it with the level of pain I live with and no pain meds--most DRs here wont prescribe pain meds the DEA has them so scared. So... Im looking for a new DR before he fires me.

 Even my Son says to me, "Maybe hes right Mom, maybe you dont have masto??" I said, "Great , if I dont, the alternative is much worse and it doesnt have IA as a symptom--Ive shocked now 16 times in under 3 years, that isnt imaginary. 17 abnormal labs arent imaginary. Tryptases of 18 then 43 are not imaginary. 3 different IgEs abnormal are not imaginary. 2 echos saying I had an infarct arent imaginary. Ive just had it...My poor son LOL.. I sat and cried and he did anyrhing he could think of to make it better.

It embarreses me that I was a nurse for 35 years and Ive found 2 healthcare professionals who are horrible and really dont care what type of care they give, their egos reign supreme.

Im just angry tonight, BIG time angry. I matter and they better watch their step, Im like that movie, "Im D*** angry and Im not gonna take it anymore."  Tomorrow I will lick my wounds and start again.. for tonight I will remember how a human can be far less than human!

Ramona!!

I am so sorry for everything you have been through.  One suggestion, try to get yourself referred to a legitimate pain clinic run by a board certified anesth.  You should be able to get yourself referred just on the basis of having IC, which I am pretty sure can be considered one of the most painful diseases on planet earth.  Anyway, I did that 9 years ago when I realized it was going to take awhile to get better.  One of the best decisions I ever made.  That way I don't have to worry about firing or being fired by an IC dr or immunologist.  They will help you manage the ultram and lortab and may be able to make some other suggestions given your propensity to shock.  It sounds like you really need to get up to see a specialist really, really soon!  Take care ladybug!  Persevere and you will get all the answers you need....it definitely can be frustrating sometimes. Many drs do want the 25 second patient.  

When you have an unusual disease, you really have to learn to be a strategist. Good for you for not backing down! A pain clinic is a good idea. They know how to take care of themselves, so are not afraid to prescribe.

I have had much better luck with doctors who are not such specialists, to tell you the truth. My primary doctor handles many types of chronic illness, a lot of the people that other doctors abandon. He may not know everything, but is willing to admit it, and very willing to learn. It would be great if we always got the best care, but that isn't much of what I am seeing, so I am happy to have someone that cares what happens when I walk out his door. I really hope you can find someone like that to manage your care. It makes a world of difference. Occasionally I cry when I see him, but the crying is because he actually cares, not because he is giving me a hard time.

I hate bad doctors.  But, it's like every other field.  There aren't that many really great car mechanics either... or accountants... or attorneys.  Every field is filled with mediocre people doing a mediocre job.

I think finding a good doctor is part trial and error and part miracle.  But, we have to keep trying different ones until we find the right one.

I'm beside myself that you're still out there without a real diagnosis.  I hope you get to see the new doc soon, and you can get on with the healing part.

XXOO

Ramona, I just channeled you and did the visual headbutt to this doctor... Ok I don't channel that was a joke I'm so sorry, stupid jerko's! I haven't seen a "specialist" since a similar doctor visit, the one that was in my corner pretty much did the same 360. I was in shock. Thank God my regular ole MD is really in agreement and totally willing to do the best he can with this and me until I see a specialist. I'm done with those that don't know, it's the big guys/gals only.  Thats' it. You are genius woman, so you know what to say to get your pain meds from your regular md.  You know how to manage your symptoms to the best of your ability. Your symptoms are out of control and you need that specialist ASAP I get that to get you to stop with those rides in the ambulance! I'm visually trying to remember how far Virginia is from fla. Didn't Lisa mention a doc in VA. ?  Yeah, just refreshed my map skills it's a big drive,  can you fly? If so then Boston should be your goal! I understand money is an issue, believe me I have that issue also but how about saving for just a consult with an expert you have enough tests to show them and they can properly interpret and diagnosis. Even without another BMB, my gosh I don't care I'll take the MCAD diagnosis and skip the BMB. Even if I had a high tryptase.  The treatment is the same unless it is aggressive masto. I know they will want to do the BMB. Just tell them for now a consult and review of records is what you want to do!  I'm pretty sure they will also do phone/records consult for a fee. Ramona don't doubt yourself or your diagnosis, you are very ill, IA is a mast cell disorder you do have that for sure, just ask the paramedics who are currently printing you a ride for 5 get the 6th for free card.  I'm with Lisa, I can't wait for you to meet that Doc!! But how about that consult idea? it may not be as expensive as you think! I wish I had flyer miles, we held onto ours for a long time and just recently used them up, someone may have a ton just sitting and be more than willing to pass them to you to get to boston!! You have your records so you show up and just have an office visit!!! Ok I think I'm repeating myself. Hugs sweetie!