Over the past few months I have been trying to come up with a plan of action. Not always easy when you are never sure what each day will bring health wise....for me or the kids. But I knew I needed to find a new primary care doc, have a new MRI done, fill out paperwork to make an appointment with neurosurgeon, find a new geneticist for the family, and see a doc who specializes in Mast Cell Activation Disorder. Whew! So far....here is what I have learned.
My new primary doc is great! He listened and I felt really understood my need to not just jump on the next medication. He also agreed that my head symptoms seem Chiari related. (whooshing in head, severe shooting pain at base of skull, and dizzy/vertigo) He ordered a new MRI which I go for on Monday. He also wants some scans of my neck to make sure the screws are where they should be. We are also trying a med I was already on before, so I should not have a reaction to it.
I scheduled for all of us to see a geneticist at Akron Children's. I have heard some good things about her, and honestly I just can't travel to Cincy for these visits. Having someone local would be so helpful! Aidan really needs a doc who can help with possible PT and OT to strengthen his joints. And since Chan is popping and cracking, I am just going to have him see her. Praying he is just a noisy kid! Either way we will all benefit from seeing her and getting answers.
Today I went and saw the doctor who specializes in MCAD. It was quite possibly one of the best doc visits I have ever had!! Not because I received GREAT news, but because he listened, understood and wants to help. He told me right off that I am not well. Hmmm kind of thought this might be true. He said he was amazed I was even functioning. I assured him I was not doing a very good job. He is very concerned with my allergic outbreaks to so many meds. He agrees with me on holding off on surgery. Although I may need a brain decompression, my body is too sick to handle it. With a weakened immune system from surgery, any new meds introduced could cause a severe reaction.
The interesting thing was everything he would normally start out with for a new patient....he can't do with me. I can't come off benadryl to have more allergy testing done because I am constantly reacting to things in my environment. He can't put me on a medication he typically uses because I am allergic. And another treatment option he feels I might tolerate but he has to slowly introduce 2 meds into my system. He told me I was on the right track with lotions, soaps, and cleaners. Making them is a good way to eliminate the chemical part. He did urge me to not get caught up in essential oils. Even though I may be finding some benefits, I must be super careful. Because of my extreme sensitivity these oils can and probably will trigger a reaction at some point. So fragrance/smell free is the way to go. Please when you see me do not criticize my lack of smell! ;)
He also expressed concern over some of my other symptoms. He feels it is very likely that I have celiac disease or a gluten sensitivity/intolerance. He ordered blood work to look into this. As of right now I am not supposed to change eating habits (this could change results). He did stress which ever I have, I must become gluten free. He feels like my allergies are increasing due to the imbalance the gluten causes in my system. He also is testing for Vitamin D and Iron deficiencies which he is certain I also have. It was very odd how he could explain symptoms or things that happen to me without me even telling him. Like he had already read my book and knew what was on the next page.
He asked me if I played the lottery. I asked why. He responded, "Well you have to fairly rare illnesses, chiari and eds, and now I may be diagnosing you with 2 others. Just seems like you have good chances." Ummm good chances for being sick? Later I was telling him about the mold growth in our old home. He said, "Yeah the lottery is probably not a good place to put your money." Funny guy! I guess this means I will be investing in doctors for a long time?
The bad news is I am sick. Well I already knew this. And it is a long road to figure out. Once I have the allergies better controlled I will more than likely need brain surgery. After that months of healing and rebuilding my system once again. The bad health days will still probably out-number the good ones. There will never be complete healing and I will have to continue to change our life style. The good, no GREAT, news is....I found another doc who is on my side and wanting to help me fight! After seeing so many docs this was a sigh of relief. He said at one point, "Most doctors probably look at you and see so many illnesses they do not know where to start. But I want to focus in and find a place to start." Thank you....thank you for stopping in your crazy busy day to listen, to help, and to try to help me find the answers!