azmusiclover

Thank you for posting this. I see the mayo allergist in 2 weeks and I am convinced this is a huge piece of the puzzle for me. Hydroxyzine has been my lifesaver for months now and I just had another round of the dreaded "d" today and I thought, I'm going to take one and see what that does. 30 min later my tummy is quieting and I feel "better" minus a little fatigue. I also noticed in your signature that we are both allergic to or have adverse reactions to a lot of the same medications. I find this highly interesting and fascinating since I also have two on the autism spectrum and one medical mystery girl who is 3. Please keep sharing more as you find out things! It gives me hope.

I have been to both Rochester and Arizona. I went to Rochester in 1999 and we stayed a week. This was in the early days of testing. I had some lab studies, the tilt table (which was deemed experimental at the time so we had to pay out of pocket!) an EEG and then I saw the doc again before we went home. It was worth it because I knew what was going on. I spent 2 years in a rough patch then got better. Symptoms flared up again starting last year, so since I am in Arizona now and my insurance covers Mayo, my husband said, go ahead. It's taking longer since I am local, they space it out, but at least it's summer here so I will get all squared away before the snowbirds arrive. I think it's awesome. I love the way they coordinate everything and the Mayo machine is amazing. If you are able to do it, I recommend either Mayo. The waits will be longer in the winter in AZ. Mayo Rochester is neat too because they have all the buildings connected with underground hallways and shops and food. Good luck with your decision.

When I have gotten fluids it usually lasts about 36-48 hours for me, but stuff seems to linger in my system- meds, numbing from the dentist, etc. I WISH I could get a script for fluids. My primary is willing to get infusions set for me, but she wants a directive from Mayo. I would just like to be able to get fluids when I need a bump.

Mytwogirlsrox, I have TONS of allergies. Levaquin, Zithromax, Doxycycline, Hops, Christmas trees, cats, pot, bees, strawberries, (these all cause severe reactions) and who knows what other environmental and food allergies that I have. When I was a kid I was literally allergic to everything except rice and carrots. Now, I can't eat rice because of my tummy issues, and I am running out of choices of things that don't make me feel sick. I am having the food allergy panel done to check for the delayed reactions, not just the immediate ones. I have horrible bloating, pain when eating etc. I've lost almost 25 pounds and am getting to the point that I am underweight. Of course, the bloat doesn't allow me to enjoy my trimmer shape Working toward figuring all this out....

I figured the swollen legs were pooling. The next day I played in a tournament and I had my legs propped up on a chair next to me. Told them it was medically necessary. It totally helped. I rarely drink, and I had been super hydrated so I would be surprised that a small sip of alcohol would cause me to react but you never know! I've had reactions to all sorts of things over the last year or so. It's weird to me that it happened there because it is an environment that I am very comfortable in. I know all the staff and the place isn't "new" and the group is kind of like a big weird family reunion. I used to work in various casinos and the poker table is one place that I have always been able to relax and not feel sick. (oh and only a couple people asked how I was, so apparently I didn't look too different! phew) I guess part of what I am asking is, can blood pooling cause you to have a reaction to the point that your body thinks it's an allergy? Is that what happens with POTS and if there is MCAS going on? I see Dr Rank in three weeks, so I doubt they will move it up, which is fine. I'll just get my records from the ER and we can talk about testing me for allergies and all the stuff that Dr. Goodman ordered.

We went to Vegas for a trip, just got back Monday. I had a great time, minus a couple of things. We flew and I was ok on the flight, which is a big step for me. I had a small amount of alcohol, my first in awhile. Was fine. Played poker for a couple days, had some late late nights. By Friday (we arrived Wednesday) I was pretty tired, but hanging in there. I was in a poker tournament with a friend of mine sitting directly to my left, who routinely engages in medicinal pot. I had my card last year but then I had a pretty significant reaction to it, so I don't get near it now. About 4 I started to feel bad, so my husband and I went back to our hotel room. My legs were HUGE swollen.... I have never had problems with that. I was feeling like I may be starting a reaction, so we hopped in a cab and headed to the hospital. By the time we got there, I was feeling very nauseous and coughing and itching, so they hustled me in the back and gave me a shot of epi. Redness went down, but then of course I was super tachy, and they loaded the benadryl in the IV and that made me feel really nauseous again. They also gave me a bag of fluids, which helped. Left there around 8pm. Felt rough the next day or so. Am on steroids until Weds now and wondering if I should try to move my appointment up at Mayo with the allergist. I have no idea if it was from just sitting next to my friend who reeked of pot, or if it was the very small sip of tequila I had. Those were the only differences around that time... or was it from getting really swollen? Can blood pooling cause an allergic type reaction? I am definitely going to bring this up with Dr Rank when I see him because if I have a mast cell thing going on, I want to know what I need to do, or at least get a full list of ALL that I am allergic to and must avoid. Is this similar to what you guys with MCAS/D deal with? Does this sound familiar to anyone? Now, I am all paranoid I am just going to have random reactions and not know what they are to!!! ACK.

They don't get too worked up about a little bit of WBC in the urine. Most of the time they think it's just an "unclean" catch. If you start to have UTI symptoms, absolutely call your doc and get a repeat on the urine. If you aren't symptomatic they don't do much with it. Sorry that your B12 was low and vit D. I'm on vit D myself. I hear you on the worrying about getting worse, not better.... story of my life since March. You can always call back and ask them if it will make you feel better. Good luck!

Schools can be tricky. It all depends on the district as to how accommodating they will be. Technically, it is the school's responsibility to provide Free Appropriate Public Education (FAPE) to all students, no matter what sort of issues and considerations they have. They ARE supposed to provide transportation for students on an IEP. (I have 2 children on an IEP currently and one in the process of getting either a 504 or an IEP, choosing which one will be best for him) Have you requested a meeting yet? It needs to be done, in writing and they have 10 days to set up and hold the meeting. 504 is best if you need permission for medications at school and limited accommodations, like extra time for work to be completed. If your child is missing a lot of school, I would recommend the IEP, because that protects them from being held back/allowed to graduate, due to missed time. Our state is cracking down on the days missed for school. An IEP will also give you much more leverage for getting additional services and support at the school if the child is still able to attend. You'll want to call the school, and request to speak to the special education department. You'll tell them that you want to have a meeting to discuss a 504 or IEP plan for your daughter due to "other health impairments" (It's one of the IEP categories) If you launch into all her medical issues, they will be lost and this way you sound like you know what you are talking about and they are less likely to blow you off. Then either set the meeting on the phone with them, or fax in a request for a meeting (I'd send a fax in anyway of confirmation if they set it on the phone, so that you have a physical copy of record) Good luck, and please keep updated on how it's going. I hope they are receptive and helpful and get your daughter what she needs.

Kim, since you'll be in a different county than phoenix, you might be able to get on services quicker. You can get ahccss still but they are super tough with the criteria. Even with getting ssi. Be prepared to fight for the coverage and having to apply more than once. Monsoon is already in swing and it's been pretty humid this go around. If you are waiting, I'd say a good time to come down would be october. Beat the heat and the freeze! See you around this winter maybe!

Thanks everyone. I intend to have fun for sure. I also plan on winning at least one tournament! I'm just anticipating people commenting on how much weight I've lost since we got together in January. I'm thin to begin with so losing 20+ pounds has me looking rather sickly now. I think I am going to go with heart condition, and the really bad flu description, since I'm SO fatigued. (if anyone asks)

Hi Chaira! I am new to the group as well, but have dealt with this stuff most of my life. I am sorry that you are running into the idiot medical contingent that thinks that we are all making it up, or stressed out. I am glad that you are getting your TTT done. My vitals don't reflect how awful I feel more often than not. Hang in there. Hopefully you will get a result that will bring you answers and not more questions. Let us know how it goes! Becca

Yes. Flying *****. Thankfully it's just a 45 min-1hr flight. We normally drive to Vegas but since it's summer and there are several stretches without any cell service, I just don't feel comfortable. I wish wish wish wish wish I could get routine IV saline treatments. It is one thing that always makes me feel better!!!! I should set up a massage while I am there. Especially for body fatigue from playing. That is a fabulous idea. Thank you for posting that. I like the description of having a bad flu without the runny nose. That is clear, short and easy to understand. I hope you have a wonderful family reunion! Becca

I am wondering how others answer questions that people have about this condition. We are going to Vegas next week. It's an annual trip with a lot of the same people who all get together to play poker at a big convention thing. Last year we went and it was part of our honeymoon. I met a lot of really nice people, and had a ton of fun. I drank a LOT last year because I wasn't sick, stayed up very late, ate what I wanted etc. This year, we are going, and I'm not going to be able to drink much, if at all. I'm going to try it and see how I feel. I can't eat much and I know my energy level is not up to playing 15 hours of poker a day. (unless I want to just lose all my money) I can live without drinking, that's not an issue. But, this is something that I have looked forward to for a year. I'm a very serious poker player. It's something that I really enjoy and with online poker being taken away, I have to go to a poker tournament or cash room to play. That's hard to do when you don't feel good enough to drive and sit up for several hours. All of that whining aside, I'm wondering what to say to people who ask me, why I'm not drinking, why I'm so tired, how I'm feeling (several are facebook friends and know that it's been a rough year) and mention my lovely weight loss. I feel like for stuff that people don't "know" about it, it comes across like it may not be a "real" illness. How do you politely answer questions from people without having to explain something they really don't care to know about anyway? Do I just say, I'm sick and they are trying to figure it all out? What if I pass out at the table? I'm going. No matter what. I don't care if we have to rent a wheelchair and I have to be wheeled around Vegas. I am going to go and enjoy myself. Becca

Hi Sheila, I am new to the group too. I am sorry that you are struggling so much with your eating. I can't imagine losing 70 pounds. I imagine that the idea of a feeding tube would be difficult to wrap your head around, but at some point, you have to do what you have to do to get calories in and sustain yourself. I have lots of GI issues going on too. My first go around I lost 30 pounds in 6 weeks. This time I've lost 20 so far, but it's been over 3-4 months. I am trying as hard as I can to keep eating, even through the pain and the diarrhea/nausea. I alternate. For a month it was mostly the "D" and then constipation for several months and now back to the D. You are not alone at all! Keep fighting. I am trying to combat it with probiotics, pepcid and zofran. I also have protonix and hyomax if needed for the D. Nice to "meet" you! Becca

Man, I was really hoping to get a matching one with my hubby when we go to Vegas. (unless I sleep the whole time) He will be happy because I don't think he really wants to get one! I got my first one in my intermission time several years ago. Darn it! I am so sorry that you had such a bad reaction.

I do not have PCOS but I do get several cysts on my ovaries, each month, and I have had all sorts of lovely endometriosis issues. I don't have acne, never did really, and I don't think my testosterone levels have been checked. I do have a little more hair that's growing in, but I just attributed it to getting more mid-life and having kids! My waxer appreciates me.

Can't help on the specific question, but I can sympathize with the doctor frustration. I have had that happen with my daughter. They get threatened because they are the physician and you are the patient and when you know more than they do, it intimidates them. It's annoying. All you are trying to do is be an advocate for yourself/your child and when it's a rare, confusing thing, you HAVE to educate yourself and sometimes them. That's why they call it the "practice" of medicine. I really hope that you can find someone who is willing to help you, and interpret the readings. Ridiculous he was willing to do the scans that way and then blow you off.

In my district it's a year round schedule. So the kids have a 2.5 week break for spring, fall and winter and then a 7 week summer break. It works out for them well. I'm not looking forward to moving away from that. Most of the other districts here start in early August, which is still a month earlier than schools in the east. Funny, we start earlier and yet our education scores round out the bottom of the US states. Don't get me started on that one.

I deal with state insurance a lot with my kiddos. They are all on Long Term Care out here. It was difficult to get. Tourettes would not qualify so you'd have to figure out a way for him to meet the 4 qualifying diagnosis' to receive state aid. (autism, epilepsy, CP or mental retardation) I know that services are more difficult the further away from Phoenix you are. I had friends in Yuma who would routinely drive to Phoenix to meet with the specialists. You'd probably end up having to do the same thing, either coming to Phoenix or driving up to Las Vegas. I think the medical is better here than Las Vegas for sure, but outside of Mayo, Arizona is WAY behind the rest of the country. I think we are in a medical black hole truthfully. The humidity does stink. I can honestly say that I am way better here, even on my bad days, than I was when I got sick in Michigan. Havasu is nice, hectic during spring break and gets a little hotter than Phoenix during the summer. Good luck with your decision!

This is someone Dr. Goodman picked. He had it in his note and told me he wanted me to see someone who knows a lot about mast cell stuff. I looked into Dr Rank on Mayo's website and he is still listed at the Mayo Clinic in Minnesota. I am guessing he is moving down here. It said his specialities are allergic diseases and pediatrics and a couple other things. I did not know that they had connected MCAS with endometriosis! Really??? Because mine was SO resistant to treatments and surgeries. Finally I had to do the ablation because I wasn't ready to have the hysterectomy. I'm still not, even though I'm done having kids. I looked into the gene stuff too... going to have a chat with the kids geneticist. Arizona girl, feel free to pm me and we can figure out a time to get together before my move. I'm not working right now and the kids are in school already. I'm paperwork chasing for them and packing and then going to Vegas in a week, but I can definitely find time to meet you. That's not too far from my house. Today has been a "couch" day. My appointment yesterday and being out in the afternoon heat has just been zapping to the little energy that I have. I must have eaten something that disagreed me either today or yesterday because it's been a couch/bathroom afternoon. I'm so tired of the pain in my stomach!!! I just want to eat normally again.

Thanks ladies! I'm currently living in the Chandler/Gilbert area; but moving next month up right up by the Mayo hospital. Hubby got moved to the Amex office up there after working from home. Boo! Too long of a commute and much closer of a drive for me if we move. I would LOVE to get together for lunch sometime with anyone or a cold beverage. I have limited friends because of my kids issues, and now with all this happening in my body it's so hard to get out and I've lost a lot of my connections that I had. It's pretty lonely. Thanks for the warm welcome. My kids are all on the autism spectrum and my boys have migraines, my daughter has seen lots of specialists since she was born. They still can't figure her out so I am sensing a strong genetic connection, especially since my boys are from my ex-husband and my daughter isn't. I'm the common link. (always blame the mother....thanks Dr. Freud) Also my kids were all preemies and I have had 4 miscarriages. My reproductive system has lots of trouble. Cysts, endometriosis, uterine suspensions, lots of surgeries... my poor belly. I will definitely see about having that genetic testing done. I'm not sure what the plan is for follow up with the EDS. Dr. G says type 3. I have a fair amount of joint pain, so I am guessing a rheumatologist is the way to go. Dr. G wants to wait until we get all my blood work done (tomorrow!) and I see the allergist before we do anything else. He really wants me to work on conditioning between now and my next appointment. I'm seeing Dr Rank for allergies. Anyone have any experience with him?

Yeah... I get it too. Just awful nausea. I take zofran when it gets real bad. It's one drug that actually works for me, without too much in the side effect department. If I take some every day for several days I get headaches and constipation, but it's better than the nausea! Good luck with it! You are not alone.

Hey everyone! I am new here, and so happy to have found this group. I've been reading through a ton of posts while I was waiting to be able to post. I am SO glad I did, because I met with Dr. Goodman today and I was very prepared for my appointment. Thank you all so much for your detailed posts about seeing him and the heads up on how good looking he is. More on the appointment later. My name is Becca. I'm 35. I have three kids, all with special needs. I was actually diagnosed with POTS back in 1999 at the Mayo Clinic in Rochester. I always had low blood pressure/fainting as a teen, and then I got mono in college and my whole system went haywire. After going to Mayo, since I lived in the midwest, I got in to see Dr. Grubb in 2000. Then I moved to Arizona. Had my son in 2001 and was symptom free until 2011. I got a nasty virus that landed me in the hospital and 2 weeks later had my gall bladder removed. It took a long time to recover from the surgery and I started having the fatigue and pain and then I got a tummy bug on a cruise in Mar. of 2012. Bad pain in my stomach started shortly after that and in a few short months I am down 20 pounds, with major GI issues, POTS kicking in and crushing fatigue. This *****. Started back at Mayo in May and finally got in to Dr Goodman. He is awesome. Observant. Listens. Cared that I was laying down on the bench in the office when he came in. I had a morning appointment and the nausea was just brutal. I felt awful. He looked over all my stuff before he came in and since we already knew about POTS, we started going through my other symptoms and history. When I was expecting my daughter, the perinatalogist I saw asked me about EDS. No one else has ever mentioned it and when I brought it up to my primary, they just shrugged it off. Not Dr. Goodman! He picked up on it right away. Got the diagnosis from him today, no question about it. He also asked me about my many allergies to medications and why I'm on Hydroxyzine. (Love it, can't live without it) And, he is definitely going to have me see an allergist and get the work up for MCAS/MCAD. I go back on Friday for a bunch of blood work. Then I see the allergist in August (since I'm local) and I'll touch back with Dr G in Sept. Sorry that was a novel, but I'm a bit overwhelmed and wanted to talk about it with people who "get" it and understand all of this that I don't have explain everything to. My poor husband, who met me when I was symptom free is having to adjust to a sick spouse... I'm a tough girl though. I beat this once, and I am bound and determined to do it again. Nice to meet you all! Would love to say hey to the Arizona girls! Becca PS- how do I make a signature?