Mydoggielovesme2

Going to lake Roosevelt for a few days r&r before heading home.No Internet or wifi. If anyone has questions about mayo ect. I will answer next week. Blessings to All.

They sprayed my throat to numd it, but believe me nothing stopped the gag reflex. It was an awful experience. Now we wait for biopsy reports.

Sorry I missed posting yesterday, but it was a very long, long day. Had needle placed by Doppler first thing in the am. Interesting to have a needle that is sticking out at about a 45 degree angle, instead of flat a giant the skin. I could not hardly move my arm all day. They said it could pop out, to be extremely careful.( trying to go to the bathroom was a real chore! haha) Had plasma cat test next back at the clinic. They have you lay down and tell you to relax as much as you can. Then they draw some blood from the IV. Now they leave you for 30 min exactly(timed) then they have you stand for 10 min exactly, at which time they draw blood again. Unfortunately at 7 min I started to pass out, so two nurses had to hold me up. Not sure why 18 gauge needle, but was told it was a must for this test. Once that was done it was off to see Dr Goodman for return visit. Not all test results in until next wk, so he is going to call. What we do know is that I of course have pots, and celiac disease. He is not sure if celiac caused pots, or if its just two separate problems. He said to exercise everyday no matter what. Told my husband to buy a recumbent bike for home. Said to stop going to PT, that two times a wk is not enough. Said exercise is the most important help for Pots and must be done on a daily basis. So he asked my husband to help me at home every day. My goal should be to be able to walk 45 min a day. WOW! Not all tests back for mast cell and of course the plasma cat. Then it was off to have endoscopy. BP was not doing great by this time, so they could not use the stuff to keep you from remembering and relax you. This was horrible. Had to watch as they took 7 biopsies from inside me. They also found an ulser. Needless to say, I am completely done in. Will take a while to recover from this week. But we'll worth it all. In conclusion: Dr Goodman is great. The mayo experience was incredible. Excellent patient care. Always on time. Incredibly organized. Very caring staff no matter if you are in the hall ways, cafeteria or where ever. Would highly recommend anyone that can to go.

Thanks, but we are taking the shuttle. Husband likes them to do the driving. And yes those needles are brutal, my arms are black and blue! But well worth it to get some answers.

Aimes, just wondering if maybe your laundry detergent or fab softener could be contributing to the problem at night?

Hi Again, well not a very good day. Was supposed to have Plasma Catecholamine test first thing this am, but my veins kept collapsing. These are very painful needle sticks as they use an 18 gauge needle, after 45 minutes and five tries, they gave up. Now I have to go to hospital at 7 in the morning, where they will use a Doppler to insert needle in a deep vein. Then back to clinic for the test. As for GI consult, IgA & IgG high, they said I have Celiac disease. Having endoscopy tomarrow pm. At least getting some answers to why feeling so bad.

Actually easiest day so far. Just had to drop off urine, and holter monitor. So had a day to rest up. Was hoping to look around town, but way to tired. Poor hubby, but he's been a great support. About 3 today I got a call from Mayo, they have changed my itinerary for tomarrow, guess they want me to see a GI specialist. Not sure why.? So my first appt at 7:45, and my last one starts at 4 pm. YIKEs! By the way, I was able to get my med records within 5 min of signing request. Now if only can figure them out.

Thank you so much Issie.

Azmusiclover, test to start around 1:15 on Thursday and last 1--2 1/2 hrs. Maybe after that we could meet. It would have to be quick though, because the last shuttle is at 5 pm I think they said. Let me know what you think.

How do you pickup daily stuff?

Issie, this is just fantastic news!! Isn't it so gratifying to find something that may work, and then implement this in your life, and not only does it work, but it works in such a large way. You have proven that there is hope and help, if a person is willing to make the changes. I know when this all started, it was hard for you to talk to the forum about it. But you did, and we listened, and I hope we are learning. Every one is different, and what one person can do, maybe another can't, but we all have the power to effect change in some way to better our lives. So thank you for sharing this wonderful and positive message.

Hi Again, well had the autonomic tests today. ARS, RSD and one other not sure what it was called, but had to do with breathing and heart rate. Then had holter monitor put on to wear 24 hr. So glad it was a shorter day, those tests did me in. Came back to RV and slept rest of the day. Some of my labs are coming back, not sure what most of the are, but negative for Lyme and typase syrum ok also. Tomarrow only have to return holter and 24 hr urine. Yea, a day to enjoy Phoenix. Thursday having Plasma Catecholamine test in am the going to the Phoenix Mayo campus for heart test in pm. Thanks for all the well wishes everyone, your support in great and very much appreciated. As for Dr Goodman.....I'll leave that debate for you younger girls. Haha

Hi All, just a quick update: Mayo is great. Amazing how quick things are happening. Really liked Dr Goodman. He is very quite, and listened very attentively. When I started the day, I was only scheduled to see the Dr, but ended up being there 6 hrs. Had labs, pulmonary, and EMG studies. Pulse ox all night, and 24 hr unine to start tomarrow am. More tests starting at 7:45am, which means carrying around urine jug all day-----yuk. Extremely tired, but so glad to be here. Thank goodness they have a special rm that is dark and filled with reclining chair, so was able to get a nap in between some tests. Today the temp here in Az was 81, and only 25 back home......added perk!! Blessing to All

How Funny, and we would all have bumper cars, so we all could still drive.

Absolutely, I've had this problem for years now. The worst for me is being in a dark room and then have a light come on. OMG the pain! Eye Dr says nothing wrong, but it sure feels like there is. All my glasses are tinked. There are other threads on here and many have this problem. :-) take care, hope it gets better for you.

Naomi, I went through this a couple of years ago. I was so glad that we got legal representation. The vocational expert actually helped. When the judge asked him if there were any jobs that would let me lay down as needed, and if there was going to be more than 4 days a month missed, would that be a problem for most employers. He said yes. The judge said that disability is granted. And that was it. I hardly had to say anything. Took about 30 min. Hope it goes well for you too!

I just finished several wks of PT. It was so much harder than I thought it would be. But I was very deconditioned. I am hoping to start again when we return from Az. I suggest not overdoing it. Ease into it. Drink lots of fluids so you stay very hydrated. And don't get discouraged if you have a bad day. POTS has a way of rearing its ugly head, even when we're trying to do something good for our bodies. Best of luck to you.

Tramadol is used to relieve moderate to moderately severe pain. Tramadol extended-release tablets are only used by people who are expected to need medication to relieve pain around-the-clock for a long time. Tramadol is in a class of medications called opiate agonists. It works by changing the way the body senses pain.

Thanks. I will keep you all posted.

LOL!! At least the rest of your day should be a breeze. Too funny.

I hope you got in today. It's so painful having a shoulder problem. I was never offered any pain meds either, just the injections. They do help, but side effects are a concern. That's why I'm not having another one. And I am toooooo afraid of surgery because of BP issues. Please let us know how it went.

Arizona girl, thanks for all the info. Don't know how much extra time we'll have or how I will be feeling, but would love to do at least one fun thing while there. Unfortunately not starting out to good. Trying to get ready is really taking its toll, i can hardlybmove today. We are driving and pulling our 5th wheel trailer, which is still winterized. So lots of prep work. And now a new winter storm is coming. UGH!!

Hello Everyone, First of all I want to say thank you for all the support and fantastic information that is on this forum. It has been such a great help and encouragement to me. We are leaving Saturday am for Az, and I start Mayo Monday. Can I tell you how much I am looking forward to some warm Az air! Anyway feeling very exhausted trying to pack ect, so thanks again to you all. What I've been able to learn here will be a big help next week I'm sure. Bless you all !!!

When I first became symptomatic, before POTS diagnosis, I was told I needed ablation. I was in the Az Heart hosp. During EP study it was found that I had sinus tachycardia. The Drs there said they do not do ablation when the problem is in the sinus node as is creates more problems, can even cause fatal event. Same with pace maker, they said 50/50 as to makeing it thru surgery. Not odds any of us willing to take. Sorry you are going through so much.

Thank you for bringing these posts back! I need all the info I can get before Mayo appt next wk.