potsgirl

It can be difficult to get into Mayo unless your doctor refers you. If you get that referral, you should have no problem.

Growltiger, You say you're horrible at standing up for yourself. Some pointers: 1. Write down notes as you think of things you want to address with the doctor, and make sure your doctor spends enough time with you to answer them; 2. Bring a friend/family member with you as an advocate! It's hard to remember everything the doctor tells you, and it would be a big help to bring an assertive person along to make sure you're getting your questions answered. Now, Welcome to the Forum! As others have stated, it certainly sounds like POTS symptoms to me, along with the possibility of chronic fatigue syndrome and other issues. You need to get to a specialist who deals with POTS patients, and get a diagnosis. Many of us ending up going to the Mayo Clinic in Rochester, MN, or they have a great specialist in Phoenix, AZ. Cleveland Clinic is another great place to go. Have you had a tilt table test yet? I was diagnosed at Mayo Clinic in Phoenix, but was also seen in MN. These places are worth the time and energy for a diagnosis. If you become unable to work again, you'll need a firm diagnosis to file for disability. That's what I ended up having to do. If you have any questions about Mayo, please feel free to PM (personal message) me. Hang it there - you've come to the right place. Cheers, Jana

Hi Lieze, I'm heading to my mom's house this Sunday. I'm in Tucson, she's in the middle of Iowa, so I'll be taking a nonstop flight from Phoenix to Iowa. I'm pretty nervous, since this will be the first time I've flown without my boyfriend in years. I'm going to swallow my pride and ask for wheelchairs in the airports and my mother has one I can use at her house. I'm going to push through everything to get there, because it is so GREAT to be back home again. Here's to mothers everywhere! I'm so glad you're getting some help and support that you were truly needing. Let others do for YOU for awhile, and take the time to rest up and get things in order. I'm praying for you and sending you positive strength and energy.

My sense of smell has increased too much! Perfumes and other odors can make me actually throw up when confronted with them too closely. I had relatives visiting about a year ago, and had to run for the restroom after holding my breath as long as I could. No fun. Movies and other events can be downright sickening. I really wish there was something to do about it - any ideas out there?

A home remedy that works certainly beats more medication, but for gas issues, I've found the generic of Gas-X to be quite helpful (Target, Wal-Mart). Good luck!

As always, BellaMia, Julie, and the others say it well. I, too, am praying for you and sending you positive energy and strength. You can do it, although I really wish you were starting each med separately. Could you talk to the doctor again and tell him that your history indicates that it's much better for you to start one new med at a time and at small doses? Perhaps you could bring someone with you to help be another advocate? Please let us know how it goes! Cheers, Jana

Good advice - not waiting to apply. I was told right after I had to quit working to apply ASAP, as the process takes a long time and you're better off being in the process and ending up not needing it then to have to apply later when you're really in dire need!

Oh my gosh, an IV makes me have to pee about every 45 minutes!

From what I've heard, and personally experienced, almost everyone is rejected on their first and second try. I got my attorney and we went to court (most don't collect any fees until you've been paid and get your back benefits. The government takes this out of your back benefits for you, and sends you the rest - usually 25%), and I was approved that day in court. So, don't be surprised if you end up having to go to court with this. You MUST find a doctor who is willing to work with you on this and do documentation. I forget now if you have insurance, but Mayo Clinic and some of the other major clinics that work with POTS will work with you on a payment plan. My heart goes out to you - I've been there, as have many of us here. I'm sending you strength and positive energy. Keep fighting! They want you to give up.... Best wishes, Jana

Hey Friday7~ I also run a very low body temp. I'm usually around 96.8. Luckily, I have a doctor who knows that if I have a temp reading of 99, that it means a fever with me, but it usually isn't a big deal because it would equate to around 100-101. This is rare for me, however. Usually I'm on the low side, and get cold very easily, although I don't know if the two are related. I'm sorry you're feeling so badly so much of the time. Perhaps a specialist might be able to respond to you in a more knowledgeable fashion. Cheers! Jana

Issie and All, I pushed for April 16th and am not sure if I can make that date now - so sorry everyone! I could probably figure out a way to do the 16th still, but I'll be up in Phoenix anyway for tests at Mayo on Friday, May 20th. The 21st would be great if we could swing that. It's hard for me to get to Phoenix and it gets expensive with the hotels, too. So...if I'll be there anyway, I would love to get together with whomever is available then. Also, June would work for me since David, my boyfriend, is done teaching at the end of May and is more available to drive me places. The second week of June we're going to Iowa, but other than moving at the end of May, that's all I have planned this summer. I know I've mentioned it before, but could we email each other instead of PM'ing? That way, we can "reply all" and not have to send out so many messages! The other thing is that we should probably move this conversation to the other Forum that is non-POTS related... Cheers, Jana

I'm also very heat intolerant, and live in Tucson - that's some good thinkin'! Like Sue1234 I'm interested in what meds they're going to have you try. I'm glad that your Mayo visit seems to have worked out well for you. Thanks!

Okay, where do I start? I was diagnosed with heart problems before I was diagnosed with POTS/dysautonomia...about a year in-between. I got really sick, went to Mayo Arizona, and found out that I had severe bradycardia and needed a pacemaker, dilated cardiomyopathy, atrial fib, and congestive heart failure. My ejection fraction was low, but not horrible, but I had many symptoms. I was put on Coreg and Coumadin (blood thinner). Things gradually improved over the next couple of years. I was diagnosed 5 months ago with a blood clot on my pacer wire that is planted in the right atrium of my heart, and am back on Coumadin for that. It is loosely attached, and swings every time my heart beats. Yikes! My echo at three months showed no change in the clot, and I go for my next echo in mid-May, at 6 months. My other pacer wire is obstructing my tricuspid valve, causing moderate to severe regurgitation. I think that's enough! Hope everyone is as well as can be~ Cheers, Jana

I can't add anything more eloquent than what has already been written. I want to add my support and strength to you and your mission!

Hi Victoria~ Are you taking all of the meds you listed? Did you start them all at once or gradually over time? I know that Benadryl can give me a little relief, but also makes me very sleepy. Hope you're well, and see you this summer in Iowa. Cheers, J

I have struggled horribly with math since I hit Algebra. I've never heard of dyscalculia, however. I'm going to look it up right now. I also can't draw, and I would love to be able to!

I have had horrible teeth for as long as I can remember. Yes, I had amalgam fillings, but they're slowly being replaced with crowns and/or root canals and crowns. I wonder if having major dental issues is in any way a contributor to our illness....

How does everyone feel about going to email to do the planning? I think it's very difficult to do via the posts. I would LOVE to meet everyone. Lunch definitely works the best for me, and I'll be driving up to Phoenix to meet - or should I say my boyfriend will be driving me up.... My email is jana_tschopp@hotmail.com. Let's get this thing planned! I can do April 9, but the 16th would definitely be better. Email me and let's take a vote. Arizona POTsies, unite! Cheers, Jana

I don't know about the rest of you, but I am extremely thirsty in the morning. I think I'll take Enko's idea of keeping water by my bed and drinking it when I wake up during the night, which is usually several times. Being dehydrated can certainly give you a major headache, so drink up! Cheers, jana

I have been tested for small fiber neuropathy at the Mayo Clinic in Arizona. It's the only test that is pretty accurate for that diagnosis. From what I understand, it's difficult to find a place that does the biopsies. I had to go to Mayo, and then they sent off the speciman to a specialty lab in New York. The way I understand it is that you can have POTS/dysautonomia, and then you would usually develop the SFN after that, although not everyone follows this path, of course. We're all different. Mine started with burning feet and then extreme pain in my hands and wrists, to the point that they felt like all of my bones were broken. I'll be trying the Alpha Lipoic Acid soon. My neuro at Mayo also had recommended trying it if my Lyrica didn't work. Unfortunately, it doesn't. Good luck, Jana

Tearose, Which Polar monitor do you use? I'd like to get one, but would like to know what model number your is, if you don't mind. Thanks!

you've made the right choice. dr. goodman is worth the effort! Good luck, and let us know how it goes....

Sue1234, Sorry, I meant HIGH Ig(A).

Another vote for Dr. Goodman at the Mayo Clinic in Scottsdale! MomDi: Stephanie Lake was my attorney for my disability matters. She was great and got me my disability very quickly - the judge during my court session gave it to me immediately. Everyone in the Phoenix area: Why don't we all get together one of these Saturdays? I think it would be great! Cheers, Jana