Kris4444

Lol! Thank you! !

Hi kitt, Thanks. Yes I should be able to go back to work on time. Riding really defines who I am. I shouldn't be riding for other issues like severe arthritis in my lumbar spine but I have to or I will go mental lol.

Thanks Chaos! I can't get over how fast it's all happened. I've been dealing with this mystery disease for years and over the course of a week I might actually have a diagnosis or at least a treatment plan that has positive results. When I think of all the medications I've been on. .. just boggles the mind to think it may all get better with antihistamines and knowledge. Ha!

Angelloz, I have a horse that I ride (used to be my profession before I got sick). When I ride I get very flushed and get vertigo when I get down. I haven't had issues in the car like you do but I have heard others mention it here. Maybe start a new topic and see what others do for relief. Good luck! -Kris

Well we can't move anyway so I will have to learn how to deal with the symptoms with meds. She said NSAIDS are known triggers for people like me. She said to avoid them like the plague. Not sure why. I can ask her at my next visit. Thank you. It is great when you find a doctor who gets it! :-)

Correction, my appointment is THURSDAY the 7th.

Thanks Monica, I will!

Lol. I know bebe. My other doctor is Dr. Wigley. I think they should write a childrens book together! Dr. Wigley and Dr. Tinkle talk about Zebras maybe? Lol! :-)

I will share everything for sure! Something is working in my favor for sure! Can't believe it!

Someone up there is pulling strings. I can't believe it!

I can't believe it! I called the office and the lady that answered asked me a few questions on why I think I might have EDS. I explained my Mayo visit and diagnosis of hyper pots (sort of) and UCTD from Johns Hopkins. She put me on hold for like 5 minutes. When she came back she asked if I were by chance local and I said yes. She said that right now his appointments are all the way into the summer but since I'm local she could have him see me this Wednesday if I'm ok with the fact that if further evaluation needs to be done I might have to come back. UM YES!!!!! I cannot believe that I reached my goal in 30 days of seeing everyone I needed to see! I am THRILLED! Thanks so much to all of you on here. Without your insight and info on WHO to see I would still be struggling to find answers. I am soooo psyched! Even if I don't end up with a diagnosis of EDS at least it is one more avenue traveled to get to the bottom of this disease process that has interfered with my life and the life of my family for years! So thank you, thank you, thank you!!!

Thanks everyone! The meds she has started me on are: Xyzal (which is prescription Zyrtec without the additives and at half strength as to not cause constipation) Singulair (prescription strength) Qnasal (which is a nasal spray but works like an asthma inhaler, really weird to use at first!) Vitamin D3 2,000 iu Difulcan (for the oral thrush issues, what's up with that?) Epi Pen After I finish up with the Difulcan she wants me to take a pro-biotic called Florastor to help add good gut flora back into my system. I'm already on a probiotic daily but she wants to add this one for 2 weeks as well. She wants me to eat yogurt every day too. I am to avoid NSAIDS and she wants me to exercise differently since exercise is such a big trigger she says that I need to start slowly, build gradually and then end slowly with a long cool down session, I am never to just STOP. Also, when I go outside and have to deal with changes in temperature I am to sit on the porch (or wherever) for a few minutes before doing anything at all, same before I go in the house after being outside. Sit, get the heart rate down then go in and peel one layer at a time off. Not sure this will work but it's worth a try. I am really hoping that she is right with all of this! My therapist has me learning about the Law of Attraction which says whatever we put out there comes back to you 10 fold so if you throw out negativity you get smacked back with it 10x's! So I'm thinking positive! This is gonna work!!! Thanks so much for all the encouragement! If it wasn't for this site and all of you I wouldn't have even known about an immunologist. Special thanks to Katybug for really stressing that this is what I need to do! You were right my friend!! Thank you!!

Thanks Monica!

I had an appointment today with an immunologist. It was AMAZING! She knew EXACTLY what was going on with me and firmly believes she can help me! I am so psyched! If I hadn't gone to Mayo I would never have traveled down this road to find her. I have to say that my photos were VERY helpful and I advise anyone who has flushing and/or hive issues to take pictures and bring them with! They really are worth 1,000 words! I have a bunch of new meds to start tomorrow. She said I should feel so much better within the next 2 weeks. She did a full allergy panel and I'm allergic to nothing which is great but my body is releasing "massive amounts" of histamine when I exercise or ride in fact she said that I'm leaking histamine all the time. My mast cells are involved but we don't know to what extent yet. She does not feel that I have the "malignant type" of mast cell disease like mastocytosis but said that the mast cells hold the histamine and that when one releases histamine it bumps into another which releases more and so on. She drew about 12 vials of blood to check the immune system and other issues. She suspects that my vitamin D levels will be very low. Bad news is she said I really need to move. Living in the midwest is only going to aggravate my condition. Until then we will have to treat with meds and hopefully once things calm down I might be able to wean off of them. Moving isn't possible for the next 8 years or so. All very confusing but also very exciting! I have to carry and epi-pen with me everywhere now since my triggers are so random, hot/cold weather, exercise, certain foods, alcohol and she is concerned that after exercise I have had times where I thought I might pass out. She said that not only are we dealing with histamine but we are also dealing with leukotriene. My understanding is that is what is causing the inflammation in my various organs but especially the gut which is my biggest problem of all. She feels that her treatment will help with that too. Oh and with the alcohol she said I should only drink beer or wine brewed/bottled in Europe and only top shelf liquor as they don't contain the sulfites that trigger my episodes. LOL. So now I am even MORE high maintenance! I have a yeast infection in my mouth, I think from the clonidine so she prescribed meds for that as well as a new nasal spray which works differently than nasonex in the way it sprays so hopefully we can get that fluid out of my mastoid sinuses. It's been trapped there since October! Next is the geneticist. So happy to be getting answers!!

Thanks blue! Believe it or not, I take an SNRI not for depression but for my bowels! Your gut makes it's own seratonin and when you have chronic issues with the gut those levels can become depleated. I went from being constipated and taking laxatives 7 times a day and doing a bowel prep every Friday after work, to getting off all laxatives (except the miralax) because of taking the SNRI. The GI doctor that I see said he pulled out the "big guns" and hoped they would work. It was working really well. At first I had a hard time with the side effects (headache and sweating) but we played with the dosage until we found what was comfortable. Unfortunately since starting the clonidine, I am back to square one with the consitpation which has me pretty discouraged. I do wonder if my high NE levels are from the SNRI and if the flushing is worse because of it. We are looking further into things still, I'm not ready to give up and neither is my rheumy who has been AWESOME about helping us track this thing down until we get it right.

I know that 3 months isn't really that long, I waited forever to get into Mayo and Hopkins. I was just hoping to get things taken care of while off work but at least we have the ball rolling!

Lol. Great name! Thanks for the information. I found a Dr. Barbara Burton as well, she is the one across from my rhemy.

My rheumatologist has been trying to find someone to evaluate me for EDS. We had never considered this as a possibility until I went to Mayo and got the hyper diagnosis. Coming to this forum I realized that I may have the triangle of diagnosises, hyper pots, mast cell and EDS. He feels that a geneticist is who I need to see for this diagnosis. He wants the full work-up done. I have been researching EDS and trying to find a doctor to evaluate me. I found one in Chicago (right across from my rheumy) but they can't get me in until May. The rheumy said he would look into it too but I realize I am not his only patient so I am trying to do the leg work. My questions are many and I'm hoping that maybe those of you with EDS and or mast cell issues can give me a clue as to if I should bother trying to get diagnosed. I really want to put a name to what I have. I'm not sure why, maybe so that I can fight against it and have something to call it? Originally I was diagnosed with scleroderma because of my Raynaud's and GI dysmotility. That diagnosis was overruled by a world class expert and he diagnosed me with UCTD (undiferentiaed connective tissue disease) and also referred me to Mayo for the ANS eval due to the frequent flushing episodes. So here are some things about me that I think may relate to EDS: Leaky heart valves. I have trace mitral and tricuspid regurgitation as well as mild pulmonic valvular regurgitation. I was told this was normal? I am very double jointed, elbows, thumbs (I have dislocated them many times) ankles. I can touch the floor with my palms, knees not bent and even fat I can put my feet ontop of my thighs (picture the meditation pose) My children are just as double jointed. They have the elbow thing just as bad as mine which is pretty gross to look at and their knees are just ridiculous. I have blown out tendons in my forearms and elbows from hyperextending them. I have degenerative disc disease, have had back surgery to fix herniations. I currently have herniations in my cervical and lumbar spine as well as spinal stenosis. I also have spondyloarthritis of the spine, I'm bone on bone at L4/5 and L5/S1. I have fibromyalgia. I bruise so easily! Have IBS and severe colonic inertia Microscopic colitis Carpal tunnel tendon ruptures Raynaud's phenomenon Livedo reticularis I also have cold urticaria which I think is more of a mast cell issue. I have tested positive for cryofibrinogen which is a rare protein found in the plasma of the blood which points to issues with the cold. I tested positive at Johns Hopkins but negative at Mayo so now I'm not sure. My rheumy is going to call the doctor across the street from him and see if they can somehow squeeze me in. I am halfway through a 30 day medical leave at work and would like to try and get as many doctor's visits in while off work. Please let me know if you think I should look into this diagnosis further or if I am just grasping at straws. Thanks. -Kris

I'm sorry he's going through this Christy, it's miserable.

That's a great question as I'm trying to get diagnosed for both. Both of them cause GI issues though. I emailed my GI doc yesterday to ask if they kept any of my biopsies and if they did could they be checked for mast cell. It sounded from his reply that they have and he was asking pathology to check! This might keep me from having to have other invasive testing done.

Lol. Yes, I'd be thrilled with a weekly! Good for you! Geez the things we talk about huh? Haha.

We are still trying to figure out how to get me tested for EDS. My rheumy at NW is supposed to have something for me by next week. I found one doctor at a children's hospital who does the testing and treats the disorder but they can't get me in until May. I was really hoping to get this done while I was off work this month but I guess that's not going to happen. Still hopeful that the immunologist will come up with something brilliant. Now if my stupid colon would go back to working I could feel much better. My rheumy thinks I should wean off the clonidine since it has made the colon issues so bad. I'm not sure it was helping much anyway. The only big difference I've seen is in my bp.

I wish I had a "weekly" lol. Oh the things we go through! Looks like I'm going to have to wean off the clonidine.

Thanks Corina. Dizzy when I use the magnesium citrate I've use the whole bottle in 1 sittingand it never works. I've been on every laxative you can imagine from prescription to over the counter. The only thing that was working is an SNRI called Pristiq. Now that we've started the clonidine the constipation is back. It's so frustrating. I've tried magnesium supplements and they don't work for me either.

I'm excited for you too! I worry about my kids as they are also very flexible and double jointed like me. I need to find a doctor who can diagnose EDS. My rheumatologist is supposed to be looking but I'm not sure he is. Please let us know how your appointment goes.