wareagle

Hi Ernie..I had Pulmonary Function testing at Mayo when I was seeking my dx. I remember that they did give me something to inhale...probably a bronchodialater. I told them I was sensative to meds. and they said it wouldn't hurt me and it was NOT a steroid. I didn't have any problems with it at all..they just wanted to see if my breathing felt easier after it was inhaled. I do want to tell you that there is a portion of the test where they had me sort of hyperventalate..this I did not enjoy..saw stars and felt like passing out! (Apparently this is how you're supposed to feel) My advise to you would be let them know all of your concerns regarding the bronchodialtater and be sure they know that you become synoptic..especially for the hyperventalation portion of the test!! Oh, and at the end of my test they had me step up and down these stairs for 3 minutes..again if you tend to have problems with fainting I would discuss this with them. At the time I had my test done I DID NOT have a dx. of POTS yet..so maybe they have already taken this into consideration for your procedure and will alter some of the testing. Good luck with everything!! Let us know how it goes!

I see my doctor every couple of months (6-8 weeks). I haven't had much change in the past year..but I find it comforting to check in with him and have that ongoing monitoring...It's also benificial b/c I'll be coming up for disability review next year and it's good to have "proof" that I'm still too ill to work. I'm also one of the folks that hasn't had much luck with treatments and am still homebound..so that might also be why I see him so often.

Hey Em..just wanted to letcha' know I'm thinking of you!! I had to make several long car trips when I was trying to get my diagnosis. We went back and forth to Mayo in Jacksonville 3 times..It's 6 hours one way. I had lots of fluids with me and it helped to have food to munch on..it distracted me...I know you have a hard time sleeping..so hopefully your CD's and meds will help you through it!! I know 5 hours seems like a long time..but you'll be there before you know it! Good luck with your appointment..I hope that it brings you some answers!! Love to you all!

Apparently you can also use a medaport. A nurse told me this is a disk that is inserted under the skin (minor surgical procedure) and when you need an IV you simply insert the needle. I haven't tried IV fluid yet..my insurance does not cover home visits..I'd really like to try them though and see if it would help!

Glad I could help Carmen!! I love the idea of a saran wrap dress..you'd definately bring lots of attention to Dysautonomia in that outfit !

Yaaaayyyy Ernie! Isn't it great to have such wonderful people in our lives? Oh...and ditto to what ever it was that Steph wrote..it sounded uplifting!!

Hi Corina..just wanted to add a couple to Stephs list. There's also the Mayo Clinic in Jacksonville,FL. Like Steph. said..Mayo's a good place to get all the testing done...I actually didn't have a very good experience with one of their "specialists" in Jacksonville BUT..every other doctor and other professional I saw was wonderful. I do believe there's some kind of center in Birmingham, AL..think it's the MVP clinic? I think someone's mentioned it before. I also think there's some type of clinic in TX..okay..guess I'm not too much help here!! If you haven't already..look at DINET's physician list..some of these docs. are part of autonomic clinics! I hope you find some relief soon!!

OOps..posted twice!

Hmmm..since all the other colors are taken..how about a non-color like CLEAR? You know...it would represent our "invisable illness"!! We could have clear glass pendents, clear plastic beads on our bracelets and necklaces...heck..we could wear "clear" T-shirts..now THAT would get us some attention!!!

Hey guys..this does sound interesting! I couldn't read the article b/c I'm not a registered user..but I had a couple of questions maybe you could answer. Who should have this test done? Is it only indicated for those who have a dx. of an autoimmune issue..or could anyone have this anitbody and just be unaware? I think the testing was mentioned under the "possible causes" section of DINET along with info on Lupus an Guillain-Barre..does that mean that people with this antibody HAVE an autoimmune issue? Sorry if this is confusing!! I was just hoping maybe this was an avenue I could explore with my doc...I'm starting to feel pretty hopeless with my treatment options..just seems like nothing works for me Love to you all- michele

Hello my Potsy pals..I was just wondering if ya'll had any ideas on how to get more salt? I can't find any salt tablets with more than 180mg of sodium in them..I've been using the chicken broth granduals which gives around 800mg..but I'm getting a little tired of it..I know there was a discussion not long ago and olives were mentioned..I also eat pickels..can't stand veg. juice so that's not an option. I just know I'm not getting enough sodium..my diet provides around 2000mg..and since it's good to get 5000mg or so I'm struggling to get enough..I'm wondering if this might be why I don't feel better than I do? Anyway..any ideas would be great!! Love to you all!!

Hey Pers..I had some weird reactions when I started florinef too. When I took a whole tablet I was extremely sleepy..then that evening my legs and lower back hurt like crazy for an hour or so. On 1/2 tablet I had several "paniky" episodes..I was shaky/dizzy and just didn't feel good..so I went to 1/4 tablet..this I was able to tolerate and within 3 weeks I had no noticable side effects. I'm supposed to be upping it to 2 times a day..but I haven't had the courage yet..gee I've only been on it for a year..you'd think I'd be okay with increasing the dose by now! Anyway..point is you may want to just decrease your dose untill you get used to it then gradually up it. I know that smaller doses aren't considered "theraputic"..but I've come to believe that everyone has a different level of tolerance to meds. and what's not high enough for some is too much for otheres regarding dosage and the teraputic benifits. Hope you feel better soon..on a side note I wanted to say I'm soooo happy that you've gotten to Oxford..I saw the pics. you posted and it looks beautiful there..keep your chin!!

Morgan- I don't have anything to add..just wanted to let you know how happy I am to see you back on the board!! I'm glad that you have a psych. you can trust..I know it's frusterating not having the answers you were seeking but at leaste you've ruled out several more things!! Welcome back!!

Hey guys! I'm trying to catch up on all these posts that I've been missing and thought I'd stop in and say "hello". Jan- I'm so excited about your puzzles..I knew that they'd be a success!! I hope that things continue to improve for Jeff..I will continue to send prayers and good thoughts your way! For all you knitters..there's a great sight that I get my yarn from in bulk..it's discountyarnsale.com. They carry a lot of great brands and their rates are good..especially if your working on a blanket and need multiple skeins. I tried to teach myself to knit several weeks ago..(I crochet)..I do not know how you guys do it?! I kinda got the hang of it but the edges are all sloppy and it's so easy to drop stitches. I've never tried to follow a pattern before..I just stick to square and rectangular objects..much easier!! Love to you all!!

Hi..just wanted to add that I drink Propel..it hardly has any sugar in it..as far as the sodium goes I've started drinking chicken broth..I use the dissovable granuals...they have around 800mg. per teaspoon. Welcome to the board!

Thanks so much for the update...and thanks for taking such great care of Morgan!! I hope that she finally gets some relief... We'll be here for you Morgan whenever you need us!!

Let's see..I chose "illness" b/c all of this hit me pretty hard all at once..I had a confirmed B12 deficiency and suspected EBV..I wasn't dx with POTS until 15 mths. after my accute onset. Looking back on my life however, I think I've always had some ANS issues..they just weren't severe enough for me to really acknowlege..like being tired a lot..some exercise intolerance..passed out after donating blood and then once after being in the heat..things like that. To my knowlege no one in my family has had anything similar to this...so maybe I'm just a fluke! Oh..and I guess I'm pretty fair skined..although I tan easily..I have brown hair, green eyes but I don't bend easily!!

HAPPY BIRTHDAY EMILY!! Don't worry about 30..just remember..it's the new 20!! I have been using a system since I turned 25..it works like this. Once I hit 25 I started getting younger..so instead of becoming 30 next May..I'll be 20...works really well my friends all like this system very much!! I hope you have a wonderful day and that this year brings you better health and lots of happiness!

I need to be more organized with tracking my symptoms too..right now I do something simular to Emily..I have a date book that I write my meds in and a general summation of my day...my ratings consist of BAD, Blah, Icky, Blah/Ick, BAD/blah, and VERY rarely "okay"..meaning I felt semi-human..I'm currently teaching my doctor this system of symptom tracking...I've also made him familiar with the term "POTS hole"...he got a kick outa' that one.

Hey Em..We lucked out on this one..no evacuation for me ! I am really concerned about all the folks in TX and LA..I know what these storms can do first hand and I wouldn't wish it on anyone. One month..one week and a day untill hurricane season is over..I pray we all make it through.

Hey Melissa..you've gotten a lot of great responses so I'll be brief! I just wanted to say I understand what you're going through..I actually made it outa' college and grad school..and got to work for a little over a year before this illness hit me over the head. I tried to continue working (I was a Speech Path.) after I became ill..at that time the docs. thought it was EBV and that I'd get better..I made it a week and a half into a new job at the hospital I'd done my internship at and I could do no more...my supervisor and peers were so supportive and initially wouldn't let me go..I'll never forget the day I typed my letter of resignation..I cried the whole time..I felt like I'd given up everything..after all the hard work and commitment to make this my life..it was gone..I felt worthless..at first. Then after a week or so I felt relief..I still didn't know what was wrong health wise and being able to just REST and do things at my own pace helped. I was able to focus all my energy on getting better..still not there..but it's nice to not have all the added pressure of working. I still hope to work again some day! So...I think you are FABULOUS darlin' b/c you aren't scared to follow your dreams..and you're not giving up..you're slowing down. I agree with Steph..stay in college as loooong as you can..I did and I loved it!!

Hi All! I sit down in the shower with my legs crossed..no shower chair..I feel more secure when I'm all the way on the ground. I also use an electric razor when I'm not up for shaving in the shower..it doesn't get the legs smooth..but you can't SEE the hair..so it works ! I usually let my hair air dry for a little while then I sit on my bed to dry it..I like to use the cold setting although it doesn't work as fast. I haven't actually "fixed" my hair in a couple of years..guess I'm going for the "natural" look too. It's funny..before POTS I had blond hair thanks to my hairdresser...now it's brown again..it was interesting to see my real hair color again..I'd forgotten what it was!..Unfortunatly I'm finding white hair now too..that was a big surprise

I found out TODAY that I was approved!! It was a wonderful surprise..I expected that I'd have to appeal..I guess small "miracles" do still happen.

Hey Em..I feel you girl..I don't have much else to add..just second everything that has been said..I've been thinking of you and when I saw this post I just had to reply even though I have no magical words to make you feel better. Sending hugs your way

Emily..thank's sooo much for thinking of me and all the others down here on the coast!! I am fine..Mom and I (and our dogs) evacuated to north AL on Sunday..we got back today and everything is fine. Here in Orange Beach/Gulf Shores we were very lucky and had only minimal damage. The rest of my family may not be so fortunate...they are all alive and well which is the most important thing right now..but I don't think they are going to have homes left. My dad lives in Pascagoula, MS and there's not much left there..my Grandma and Uncle live in New Orleans..and another uncle in Slidell, LA...I've just now really been able to relax and watch CNN and our local news..the pictures and reports they are giving are heart breaking. My prayers go out to all of those effected by this tragedy... Thanks againg for checking on me Em..it's good to be back at home!!