all4family Posted March 20, 2009 Report Share Posted March 20, 2009 Hi Everyone!I went to see the doctor that for those of you who don't know I had a bad first experience with. I was very nervous, and almost ran from the room before he got in there. But when he came in it was a huge difference between the last visit, and this one. He first asked me how I was doing, and I said ok. Then he said I see you had a EGD that didn't go well. Then he really shocked me when he said Tell me about it. So I just explained to him how it went and he kept asking more questions, about doing it under sedation. That was when I explained to him that I just wasn't doing these things anymore, and it wasn't worth it to me. I said everytime I take medications and dyes etc. I end up sick and no one believes me. Then I am left to suffer the consequences of what has happened with no one to help. Then I nearly suffered a heart attack when he said to me, "I understand"! Now he started to pull stuff up on the computer, and said there is a lot going on here, but I am just going to concentrate on the tests I ordered for you. We started with the Mast Cell information, and he showed me that my 11 beta prost F2, (u) was high. But then he said this N-methylhistamine usually goes up with that, but yours doesn't. And he said he doesn't know why. He said he asked a lot of other doctors and specialists, but they didn't know either why one went up without the other. So he said he can't say why it is, and he doesn't know if it is causing any of my symptoms. I actually felt he was humbled that he had been so hard on me the last time. But then he said I also had another lab that we needed to discuss. He had handed me all my labs on a paper before we started talking! He found the page and told me to circle this. It was heterozygous CYP2D6 Genotype. He explained I am lacking an enzyme to metabolize drugs. I was made toxic to the drugs! It was at this moment that everything that I have experienced for the last 5 years was suddenly validated! I had told everyone that the medications were making me sick! Then I could have fallen off the chair when he said I hope this gives you validation. ( I truly think he felt bad!) I was so happy I gave him a second chance. Even if he doesn't know the answers for the other thing at least he said that, and at least I am not left feeling like some kind of whiney nut!!!! I thanked him, and walked out of the room to my husband in the waiting room. (we decided for everyone's best intrest that it would be better if he didn't go in with me as angry as he was! ) I was so giddy he said he didn't know if he should run or not! I feel like 5 years of being told I don't know what I am talking about was erased away today! Now my only problem is I have a dentist appointment on Tuesday, and I was so happy I didn't ask about taking antibiotics, or the novocian! The last time I took antibiotics for a dental appointment I ended up sick for a year!! Thank you for enouraging me to go. And please anyone who knows about these tests, tell me what you know! (The doctor actually told me to go on the internet, and learn as much as I can. I will know as much if not more then any of the doctors I talk to about this! Thank you all for being there!Suzy Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 20, 2009 Report Share Posted March 20, 2009 Whoooo Hooooooooooo! Whole - E - COW!Congratulations! Quote Link to comment Share on other sites More sharing options...
all4family Posted March 20, 2009 Author Report Share Posted March 20, 2009 THANK YOU SO MUCH!!! Quote Link to comment Share on other sites More sharing options...
mjan Posted March 20, 2009 Report Share Posted March 20, 2009 MD = MEDICAL DEITY... NOW MEANS...MIRACLE DAY !!!!!And.. he told you to go on the internet??? WOW!!You have been validated..finally !!!!Warmly, Jan Quote Link to comment Share on other sites More sharing options...
all4family Posted March 20, 2009 Author Report Share Posted March 20, 2009 Thank you Jan! Yes I have! It is amazing how much that can mean to a person! I had tried telling the doctors that I knew there was something wrong with me and the drugs, and they would just tell me I needed more! The more I took the sicker I got! I told them that, but they said it was conversion disorder because I was scared of drugs! (Welll if I was so scared then why was I on so many?!) Yes validation is a wonderful thing!Hugs Suzy Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 20, 2009 Report Share Posted March 20, 2009 Hi Suzy,I am so happy that you finally have the answer has to why to can't tolerate meds. What a victory! Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Ernie,Thank you so much! It does feel like a victory!Suzy Quote Link to comment Share on other sites More sharing options...
mjan Posted March 21, 2009 Report Share Posted March 21, 2009 So...what's next for you?And how the heck are you feeling phsycially these days??Warmly Jan Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted March 21, 2009 Report Share Posted March 21, 2009 WOW! I forget how your first visit went but so glad this one was GREAT!!!!!!!We NEED to hear more POSITIVE STORIES, don't we? I am glad you gave this doctor a second chance AND most importantly he VALIDATED your issues.thanks for sharing. Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Jan,I know I need to learn a little more about both of these tests, and at this point, and avoid as many meds as I can. He also said there is another test for another enzyme that isn't even out yet, but he is hoping it will be in May, and I will be scheduled for that then. He will also retest my mast cells then. I am hoping someone who knows about mast cells might be able to help me understand that. Thanks for asking how I am feeling. I have had some real bad days, but just the last 3 or 4 days have had improvement. I have done a lot of fainting, or near fainting, and that has improved. I have had an "ear infection" that I think has made matters much worse for me. I explained how the ear infections happened to the dotor, and that I am not sure it is an infection, (or at least doesn't start that way) but rather a reaction to something in my environment. He nodded his head yes like he agrees. But my entire ear swells shut, and the whole side of my head hurts, and it makes my imbalance, vomiting, and fainting worse. I have used drops, but they make it worse. I use peroxide in it, and it is the only thing that is helping it. I have to have 2 teeth pulled, and am really worried about weather or not to take antibiotics, and then the novocain. I just don't know what to do there. So that is where I am with that. How are you?HugsSuzy Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Sophia,Thank you! It felt great to come on here and tell a positive story! I feel like all I ever do is complain, and it sure felt good to have something good to say! And validation is GREAT!!!!!!! Thanks!Suzy Quote Link to comment Share on other sites More sharing options...
mjan Posted March 21, 2009 Report Share Posted March 21, 2009 AHA.. the ear thing. Is it the inner ear that swells and nearly closes shuts? AND it presses on all the nerves on side of face??I get that..due to lack of secretions/wax..It got so bad for so long they had to place a STiNT inside the ear canal..sothe ear drops could work. I got cysts in my ears when I was young. They never can SEE inflammation so they dont think its an ear infection..send me to the ear doc..and his tools can get INSIDE DEEPER..and WHALLA...SEE the infection. ONe guy just placed this antibiotic power inside my ear after gentling suctioning out the infection/pus. Amazing stuff. I am NEVER to put anything in my ears.. and looked at the non infected ear and was sure he would not see much or any wax..sure enough he was right.FEEL for you...i had one for 10 months straight until I demanded to see the ear doc.Good luck..so sorry you have been so sick. DANG!! Have you applied for SSI/SSDI??Warmly, Jan Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 21, 2009 Report Share Posted March 21, 2009 Whoa- so good to have an answer to part of your puzzle. And, VALIDATION!!!!!!! = Victory!!!!!!!!!! I never heard of that other test that he thinks may be linked to MCAD. I will try to do some research. Congratulations.Julie Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Jan,Mine are outer ear, and they can't help but see it. My ear opening swells shut to where they can't get the odoscope in. My mom had severe ear infections as a kid, and had some kind of black fluid that came from her ear. As a result she has no ear drum in one ear, and is deaf on that side, and on the other side has only partial hearing. So ear infections do concern me. I wonder if they start as infections though. they seem like they start with blisters on the inside and outside, and then just kind of spread. It's weird. I've had my ear infection for 2 months now, I can't imagine for 10 months . This thing has brought me to my knees in tears too many times. I really hope it doesn't last that long. Do you still get them? I did have the disability office contact me once, and say I qualified for disability! Which was just a shock to me, because I thought that was something you had to really go after. But when I got back ahold of them they said my husband makes too much money! (funny we don't feel like he does!) So I just dropped it. But it sure would help. HugsSuzy Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Julie,Thank you! Thank you! And thanks for encouraging me to go and stand up for myself! So that isn't a familiar test for you? Well I am going to do some research tonight. I just hope some of it sinks in! hugsSuzy Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 21, 2009 Report Share Posted March 21, 2009 I feel like we collectively should send him a Thank you note !!!!!! This is big. Yeah You....As far as mastcytosis its annoying but for me treatable. Did I say annoying.....Thanks for sharing your "most excellent" news.!!! M Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Miriam,Yes. He does deserve a thank you! I think he got it when I was crying tears of happiness, and relief, and all the stuff in one just sprung up when he told me this. I told him that was worth a million tons of gold bricks to me! As for the mastoytosis he said the reason he can't say if it is causing my symptoms is because both things didn't go up on me. So it doesn't fit in with any known disease. So he said there is definatly something wrong, but he can't say what, because there is no disease to put to it. But I am going to do my own investigating and see what I can learn. So when he retests that in May maybe I will be more educated. Thanks.Suzy Quote Link to comment Share on other sites More sharing options...
mjan Posted March 21, 2009 Report Share Posted March 21, 2009 So...does he know that you had been slowly poisoned over the years from you environment? ALL docs need to know this..they may not know what to do..but it would be a missing piece in the puzzle. In MY opinion anyway. YOU should be on MYSTERY DIAGNOSE..show..honestly !! Let them pay for all of you to be tested and on the show. After all your husband had neuro symptoms too.Is this doc a local neuro then??Jan Quote Link to comment Share on other sites More sharing options...
EarthMother Posted March 21, 2009 Report Share Posted March 21, 2009 Thankyou so for sharing the good news. You may have already said but how hard is it to get the enzyme test?Quick thought on the Dentist visit ... I have asked on at least two occasions to have no drugs during the procedure. The first Dentist was Korean and she readily agreed -- stating that where she was from that was standard due to money asons anyway. The second Dentist was American and much more leary ... but I explained my reaction to the meds was worse than my reaction to pain ... and that if need be we could always stop and shoot up something. The procedures were a two sided filling and a three sided replacement. I'd do either again the same way. Pain goes away rather quickly compared to the hardship we endure with the drugs.Good luck! Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi Jan,I LOVE mystery diagnoses! I don't think they will pay for your treatment though! But I would do it if they did! I did tell him (well at least his resident at the time) about all that has happened, so yes he knows. He is an allergist from out of town. Yes my husband does have some neuro symptoms, but he doesn't have the same complete intolerance to drugs that I do!HugsSuzy Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Hi EM,When I asked him if it was hereditary because my mom has also had some problems with some of the drugs on the list, he said yes. So I asked him where she could get the test. He said he wasn't sure, but sonoran quest (I think) might do it. I am not even sure what the name of the test is, but I will find out for sure. I think the genotype is the name of the test. http://www.dnavision.be/personalizedmedici...CFR7yDAodkW-57ghttp://www.clinchem.org/cgi/content/full/51/7/1291http://www.jmp.com/software/genomics/?utm_...CFSIeDQoddFXb7QThe first 2 of those is on the specific one that I was missing the enzyme, or gene, I am not sure yet....still learning. But there are several of these. You can test ok on one, and not on another. I will find out today and let you know more. Thanks for that information on the dentist. I even tried to get a laser dentist, but they said they can't use the laser because I have infection there. I have to get a root canal, or have 2 teeth pulled. I chose to get them pulled, because I don't know if I will handle the chemicals from the fillings and glue needed. But I have been reading on the internet looking for information that I would be able to do the dental work without antibiotics, and all I keep finding is don't do it without antibiotics, or you will die! (well ok...probably not quite that dramatic, but close!) The last time I had a dental appointment I took the antibiotic, and that started my second bout with being very sick. I never got the dental work done because of this. So I feel stuck between a rock and a hard place. Which is worse leaving this bad tooth in my mouth to become worse and worse, or getting it out and how?! I even looked up hypnosis dentists! If I could find one I would do that! But that doesn't answer the will I live without antibiotics question! You said exactly what I have tried explaining to people for a long time. I can survive the pain of a day or two, even if it is severe. But I just can't handle how sick the drugs make me. I have dealt with pain in my tooth as more and more pieces of it keep breaking off. But even with that I know the medicine is worse! Do you think I could handle the pain of having a tooth extracted, or a root canal? If I could and I could find a dentist willing to I would give it a try! Maybe I will see about the laser dentists again...none of them will do it. Thanks a lot for sharing that!HugsSuzy Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 21, 2009 Report Share Posted March 21, 2009 Wow Suzy, I'm SO happy for you!!!!!! Finally, some answers AND a doc that's on your side! Yay! Janie Quote Link to comment Share on other sites More sharing options...
all4family Posted March 21, 2009 Author Report Share Posted March 21, 2009 Thank you Janie! It feels real good to have a doctor who now believes what I say when I say I get sick on meds!!!! I think he will always listen to me now. I hope he does others too!!!!HugsSuzy Quote Link to comment Share on other sites More sharing options...
EarthMother Posted March 22, 2009 Report Share Posted March 22, 2009 Thanks for the links, I'll check them out!I didn't know about taking antibiotics for root canals and extractions. I've not had either. My youngest had a nasty spill on a bicycle a couple years ago and broke her front tooth (as well as lots of cuts etc. on face, lips and mouth). The Dentist had to do a few procedures over the course of a couple weeks as the swelling from her injuries subsided. He prescribed an antibiotic which I hadn't heard of so I looked it up and was very concerned about the dose he recommended (she was all of 80 pounds) and the side effects -- she's allergic to penicillian so I am cautious. We agreed to forego the antibiotic as a profolactic (she had no sign of infection at the time) and wait and watch to see how everything faired. Keep asking questions, call everyone in the book and hopefully you'll find something that works for you. Quote Link to comment Share on other sites More sharing options...
momofsara Posted March 22, 2009 Report Share Posted March 22, 2009 Dearest Suzy--HAPPY, HAPPY,JOY, JOY--- This is me doing my happy dance for you !!!!!!!!! Quote Link to comment Share on other sites More sharing options...
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