Newbie To The Forum, From Arizona

[azmusiclover]

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?

[MomtoGiuliana]

Hi azmusiclover

Welcome, although I am sorry you had to seek DINET. I hope you will find the forum helpful and that you are able to find the treatments you need to feel better.

I have a sister in Scottsdale, AZ. (Who is also a music lover Professional flutist)

To make a signature, go to the top right of this page. You will see your logon name. Click on this and select "My Settings". From there you can select the option that will allow you to edit or create your signature.

[arizona girl]

Hi, welcome to forum, so glad you found us. There are a handful of us on the forum that live in arizona. I'm down in the chandler area. Glad that goodman caught the eds, who is going to manage that for you? Which allergist at mayo are you going to see, there are only two? A few of us have seen one of them. Just a heads up he only diagnosises mastocytosis and isn't really up on the mast cell activation issues. So don't want you to be disappointed if you don't get anywhere with him.

One of the other members chime in here, because that wasn't my issue when I saw him. However I just came across another allegerist in Scottsdale who actually did some research on it. Haven't seen her myself but she has good reviews and was on the top doc list. Her name is Dr. Laura Ispas-Ponas. She has a research article she co-wrote at the bottom of her bio page. It is a pretty good article, Called the "Many faces of mastocytosis". She might be another option, but I haven't seen her myself. So can't vouch personnally.

Also may I ask what your children's special needs are? I was recently tested by my cardio for a gene called MTHFR. I have the most severe mutation of it. It is associated with many different kinds of problems. I'm working on getting an appointment with a genetist at U of A, who specializes in it. I have a messed up immune system, small fiber autonomic neuropathy and several autoimmune disease.

So good luck to you and welcome!

[issie]

Hey, another Arizona girl here - from North Phoenix.

Dr. G and Dr. Lewis are looking more into mast cell things. There are a few of us who do see them both. So far, they are trying to figure it all out - but are definitely open to the idea and think it is a player in our problems. Dr. Lewis is a very nice man and seemed to want to really help - the last time I saw him. I took a whole lot of information in to him and I know recently some more info was taken in to Dr. G to be passed on. So, we will see if they look into it more.

I also have EDS and was dx'd here at Mayo. Now, is to figure out which kind you have. Usually a rheumatologist and geneticist help with this. But, I've found not a whole lot of rheumatologist are that familiar with it. They think I have the hypermobile form of it - but have recently found through my 23&me genetic testing that more of my markers for EDS are for types 1 and 2. So, that can be tested with genetics -just don't know if I need to go there or not - since I already have the dx. The only type you need to worry about is the vascular type - cause that type can cause some really scary things. EDS can contribute to a whole lot of POTS symptoms and lots of pain issues.

I also have some mutations on my MTHFR gene - not as bad as arizona girl - but, need to do the same treatment as she does. I also have some other mutations in my methylation snps and that indicates more things that I need to do. Diet change is one biggie. It also explains why I can't tolerate certain drugs, supplements etc.

So, sorry you add to the ranks of us here in AZ. But, you're on the right track. Dr. G is starting to try some new things with me and so far so good. YaYYYYYYY!!!!!!

Issie

[Chaos]

Welcome and congrats on getting in with Dr. Goodman. He's a very caring doctor. I'm not from AZ but drive 7 hours each way every couple months to see him. Maybe we can meet next time I'm over that way.

I also have EDS and possible mast cell stuff. He's definitely more receptive to the whole MCAS/D idea these days, so hopefully he'll pass along what he's learning to Dr. Lewis (the allergist there) and they can start doing more of the testing that may be more sensitive for MCAS than what they currently have available.

Sorry you have to deal with all this, but glad you got in with a good doc and hope you will soon have a treatment that works for you. Glad you found us.

[issie]

Welcome and congrats on getting in with Dr. Goodman. He's a very caring doctor. I'm not from AZ but drive 7 hours each way every couple months to see him. Maybe we can meet next time I'm over that way.

I love it when Chaos comes, she and I have 4 hour lunches. Ha! Our husbands came along for the first one and now they just drop us off together. We had fun this week. It's great to get with others who understand you.

Issie

[McBlonde]

Welcome and congrats on getting in with Dr. Goodman. He's a very caring doctor. I'm not from AZ but drive 7 hours each way every couple months to see him. Maybe we can meet next time I'm over that way.

I love it when Chaos comes, she and I have 4 hour lunches. Ha! Our husbands came along for the first one and now they just drop us off together. We had fun this week. It's great to get with others who understand you.

Issie

Maybe I need to move to Arizona!! Good doctors and good friends are hard to find!

[azmusiclover]

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?

[issie]

I'd hold out for Dr. Lewis. He is the one working with most of us on MCAS. Once you get in with one doc, you can't change. He is the one looking into this for us all. Call and request him.

You know they are connecting endometrosis with MCAS. I had that also and 8 abdominal surgeries later - had a complete hysterectomy. So, yeah - poor belly. I totally understand where you're coming from there. I was never able to have kids.

Sorry about your little ones, but I know they bring you lots of joy despite their issues. Sad that our bodies are so dysfunctional and things are inherited.

Issie

[arizona girl]

Oh gosh your in my neck of the woods, for a bit any way. I grew up in scottsdale though. I haven't heard of Dr. Rank yet, they have two other docs that are suppose to specialize in immunology not just allergy. Maybe he is new and they bought another doc in because they only had two. It looks like he came from the rochester campus. If you look at his bio it looks like he is really up on stuff. You will have to let us know how it goes with him. I'd trust Dr. Goodman's referral if that is who he wanted you to see.

With the autism and misscarriage issues, you might want to do a quick google on the MTHFR gene. Both of these conditions are associated with it. There are 3 forms of it, two of which are considered abnormal. I have the 677TT homozygous version which is the highest risk form. Which means I got one copy from my mother and one from my father. This gene is responsible for converting folic acid to the active form that the body uses, when it is defective the enzyme on the gene is switched and the body can not covert it. Lack of folic acid can cause all sorts of problems. I'm still just learning about this, as I only found out that I have it a few weeks ago.

The good news is that the treatment for it is the methyl or active forms of folate and b-12. I'm just starting samples my doc gave me of mantex a prescripton replacement form. I will know more if and when I get into see the doctor at UofA. I suspect I may have other gene defects as well.

I'm so hopeful for you and your family and pray you are on the right track now. I live near the supertarget at the santan and gilbert and be happy to meet you before you move up scottsdale way. I know how issolating this can be. If I didn't have thursday am womens group at central christian to go to, the week days would be really lonely. I'm not working and wasn't able to have kids.

[issie]

Oh, I was thinking this was the other allergist there. Maybe they did bring in someone new. Maybe, he will know MORE about MCAS. Is this someone Goodman wanted you to see? I know sometimes, when they put the orders in - the schedulers will just give you to the first one available. But, if this is a new guy and someone Goodman is wanting you to see --that's a whole different story.

Issie

[azmusiclover]

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.

[McBlonde]

Wow! The kids are already in school in July?! They start early!

[issie]

WOW, really excited that they have brought someone else in to help with this complicated issue. Hoping there will be some answers. Keep us posted. Dr. Lewis is a sweetheart and has been really trying to learn . . .but, if this guy knows more about it -----YAYYYYYYY!!.

As for endometriosis, I did everything that was known to do at the time. Nothing worked and the pain was horrible. I had wanted kids and kept having clean up surgeries hoping to have some. But, it didn't work and I couldn't live with the pain any more. I had the complete hysterectomy at age 36 and had my first hot flash the day after surgery. I didn't go on replacement for 5 months, because if they missed any spots - it could grow back with replacement hormones. So, then started trying to find something to help with the instant menopause. None of the traditional hormones worked. Finally found bio-identical hormones that worked. Now, just use estriol and some herbs. I never had any pain again since my hysterectomy. I had all kinds of intestinal issues before it and that went away too. But, the removal of the organs and trying to balance things - brings it's own set of problems. So, it's good to weigh it out carefully. I don't regret it, and wish I'd done it sooner. But, emotionally - I wasn't ready - until I did it.

Issie

[azmusiclover]

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.

[McBlonde]

Oh! That's me in McBlondeLand!! I never even thought of year around school!

[Angela]

Hey AZ Girl, you mentioned that Dr. Laura Ispas-Ponas is knowledgable about mcad so I tried to schedule an appt. but turns out that she only refers you to the mayo clinic, she doesn't treat it. My insurance doesn't contract with Mayo and out of pocket cost for consult is sooooo expensive. Any other ideas? Anyone? I live in Phoenix and dx is hyperpots

[arizona girl]

Oh pooh, I saw the research paper on her website, so you'd think she'd treat it too. I haven't gone to her yet and was going to go to see about food intolerance, I don't think I have mast cell, but I do have immune deficiency which immunologists are suppose to treat, but she'd probably send me out there for that one too and I'm perfectly happy with my neuro handling that.

It looks like Dr. Goodman at mayo is pulling a different immunologist in for the mcad/mast stuff, azmusic will be seeing him, his name is dr. rank, maybe ask her. I don't know anyone else up on mast cell, most docs here just seem to be plain old allergists. I did see one of the other immunologist at mayo and I wouldn't go to him again.

My cardio nurse practioner is knows about hyper pots, as dr. grubb sent her information about it after I went and saw him. But she mainly prescribes my labetalol he order, she is however a good sounding board. I see her tommorrow at her new practice. Do you have any idea if something else other then mast cell is trigger your h-pots? My neuro is good for autoimmune neuromuscular causes. I also see a endo and rheumy, my pots was autoimmune immune defect cvid caused. I think a lot of here struggle with finding docs for the rarer stuff that can cause pots or dysautonomia.

[issie]

Oh, AZgirl,

I lost the name of your rhemey. I can't find where I wrote that down. Can you give that to me again.

Issie

[Angela]

AZGirl,

Not sure. Had my son 2009, had surgury for mastitis from breastfeeding 3 months later that antibiotics weren't fixing, then went through a s***ton of emotional stress, boyfriend fell off 30 foot lift, and couldn't walk for nearly a year so I had to take care of him and my son and work, plus his mom died that same weekend here at the Scottsdale Mayo Clinic age 60 (no one knew why) went on a diet to lose 20 lbs of babyweight (couldn't stand the weight gain since I have always been slim) But I have had some weird symptoms going back to 2004ish when I was going through a breakup. They went away after a month or two so I attributed it to stress but came back really bad some time 2010 ish I think it was...going to urgent care, er, er again, neuro who thought I was having siezures due to eeg so had me on 2000 mg keppra but once we figured out the tachy and high bp standing up that neuro said he doesn't treat POTS so since I can't afford the mayo, I went to a couple different electrophys cards and 2 more neuro's before finding a neuro that I like. He knows a little about POTS (well it seems like no one truly knows anything about Pots). They took me off keppra since they decided it wasn't true siezures or epilepsy, just brain wave slowing (possibly cuz not enough oxygen or blood to brain????)

[arizona girl]

issie, that is Dr. Manek she joined paul howards practice by scottsdale north. You might actually like howard better he is a top doc and he uses nutrtional sups which I know you like better. Don't know if manek has taken on his mo yet, as she came out standford and mayo rochester. She hasn't suggested any to me yet. Hey what endo did you decide to go to?

angela, it's amazing the boatload of challenges that come all at once, mine were different then yours but as overwhelming, You think what heck else can go wrong, then one day you are past the worst of it, and you wonder how you got through it all. So, sorry you had all that on you.

My neurologist office actually specialize in seizure type illnesses and have partnered with mayo on it. They also now about pots and can do qsart and skin bioipsy to look for small fiber neuropathy, they don't do tilt testing. They are phoenix neurological associates, if your doc is one of the docs that practice there, your probably in good hands. They may be a good place to get a second opinion.I know this my doc tests for a lot of rare conditions that can cause pots, they take most insurance, it might be worth it just rule some of that stuff out.

Take care and wishing you better days ahead. It can get better!

[issie]

Thanks, AZgirl - I will try to find out if one of them is familiar with EDS. Not all rheummy's are. Do you happen to know if they are?

I thought I had her card with me and I don't will have to let you know her name later. It is someone that my PCP recommended. She is trying to keep me in their circle of doc's - since they can share records. I think her name was Peckum or something like that. I liked her. She is running a whole lot of test on me and was very attentive to detail and added test that I wanted added. I have yet to get my results and have only seen her the one time - but, was really impressed with her. Will write more about her as time goes on with her. Thought I'd try her and see how it went - before looking into your gal.

I'm anxious to find out about this new doc from Mayo - Dr. Rant - it will be interesting to see if he will get on board with what some of the docs in the east are doing. I hope he will and we can get some more definitive testing and also maybe access to some of the new meds that are in research right now.

Issie

[Angela]

AZ Girl, thanks. I do think the stress was a big factor and thats why doc. from the mayo clinic who specializes in diagnosing epiliepsy re-reviewed my eeg and said it wasn't siezures, just brain wave slowing. And, yes, that's the PNA is the neuro office I am going to now and I do like my doc. I did the ans testing which came back "unremarkable" but that was done when I was having a "good" day and the blood flow was normal (don't know if it matters that I was laying flat at the time) as well as the neuropathic testing so that was confusing but based off of all my hr and bp testing and systems my doc says (as well as 2 previous cardiologists and electrocards) everyone says I have hypo pots; just talked to my doc yesterday about testing my vitamin levels to see if any definciencies there. He says it is very hard to diagnose mcad so couldn't give me any advise there right now. Have you seen any improvements since you were first diagnosed?

[icesktr189]

Im in the Chandler area and see Dr. G too

[arizona girl]

Ang, small world, I see Dr. Levine at PNA, who do you see? I know dr. hendon sees a lot of epsy patients. Dr. Levine is more up on the autonomic stuff as he treats a lot of patients with autoimmune neuromuscular disease like ms. Have they done a skin biopsy on you for small fiber neuropathy? Did they do that qsart test on you were they put the electrode on you and measure your sweat? That does sound kind of wierd only testing your bp/hr when your lying down. You said your bp/hr go up when you stand right? To test for pots you have to be lying quietly for awhile and measure then stand up and stay stationary and measure bp/hr at 1, 3 and 10 minutes. That's called the poor man's tilt. I actually get worse the longer I'm on my feet so 10 minutes is'nt long enough for me. My ttt showed the rise and sudden drop to syncope but, it took 20 mins for 1st phase, nitro then 10 mins to syncope. Have you had a tilt table test, it really is the best way to test for this. Also a test the measures your supine and standing catecholamines, if you can get it drawn during the ttt is best. I had mine done separate and it showed a 3 fold rise in norepi from supine to standing. Which diagnosises hyperadregenic pots.

So, yes I am improving, but first we had to find out why I had hyper pots which Levine helped do. I have sfn, along with low immuninty(cvid), and 3 autoimmune diseases. We are treating for all those separately and my bp/hr are much better, it will take a while to start feeling better as I still have a lot of inflammation from the autoimmune diseases, which we have only been treating for six months. I'm w/ a cardio, endo, rheumy who are each treating their part of it.