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Welcome! I was very atheletic before I got sick, I played soccer and softball, and was one of the fastest runners I know. At 10 years old I ran a mile in just under 7minutes! I got sick when I was 12, so no childbirth didn't bring it on, but it started out w/a broken femur bone and a simple virus and within a few days I couldn't stand up. I don't remember the biggest symptom but I was just in a giant fog. Even the simplest movements get my heart going madeline

My heart just breaks for you, Morgan. I have a Westie also, about the same age and it would be terrible for me to let go I hope that you can find joy in the time you did have with her, those memories will always live on. and maybe when you are ready you can get another westie b/c they are wonderful dogs (((( HUGS)))))) Madeline

To those who said they said consider themselves "recovered" what does that mean? I guess my biggest questions are like.... does that mean you don't have to take rest breaks? Do you have to use a wheelchair to do things like go to the mall? I'm very curious, I guess recovery means different things to dfferent ppl. I have a dream of being able to go to the mall without a wheelchair, but that may not be up at the top for other ppl. so I'm just wondering what you all think O, yea and the recoverd ppl,. what did it take to get there? Madelie

ode to fantasy, you are so lucky to have mestinon help so much!! good for you, congratualtions.

HI Ling! I can't offer you a lot of advice here, but I have been having what we think are alot of reflux problems as well. I started taking zantac this week and are going to talk to the dr to see if there is a better treatment. Mine has started to get really bad with upper abdominal cramps and nausea and just feeling terrible. Sorry, i have no advice just empathy Madeline

Stacy, It wouldn't hurt to give Mestinon a try. I started taking it two years ago and had the best improvement I had since I got sick in 1997. However last March I seemed to have some sort of reaction to it where my blood pressure went high and all my joints were stiff, so I had to reduce the dose and haven't been able to build up my strength. Lately, I have been having trouble with my allergies, but once I get over them out plan is to try the mestinon again and stagger it, like take a higher dose every other day and see if I can tolerate it again! I am praying that I will b.c the meds combo of florinef, prozac, and mestinon have done more for then anything else. I guess sometimes your body can just get overwhelmed by meds and need a break, so Im hoping thats all it was. but by all means, Mestinon is worth a try!! Madeline

Has anyone tried this therapy? If, so how is it going? I'm a dying to find out!!! Madeline

Rachel, thank you for the post! In someways I am in the same boat as you are. My dr doesn't know what to do either and he told me I need to think long and hard about going to Vanderbelt, Mayo, or Dr Grubb, but isn't sure which is best and how soon I could get in This is all so frustrating, but you are not alone. If anyone of you could answer my question also, is there anything different they are doing at these places? Any studies on new meds? Which dr is the best? Any advice would help Madeline

O SARA, I am in the same boat as you. After a year and a half of mestinon and making the best progress I have in 9 years with it, my body has decided to not tolerate it by causing muscles cramps and hbp, grrrr My dr doesn't know why or what to do either, so I am feeling desperate b/c on half the dose of florinef and mestinon I can't do nearly what I was able to do before, it's SOOO frustrating I don't have any answers for you, but just want you to know I know what you are going through and it is awful ((( HUGS)))) Madeline

I'm have seasonal allergies. For food I am allergic to chicken and turkey! Is that abnormal enough?!?! hahaha other then that i am lactose intolerant, but seem to be able to digest processed dairy like yogurt cottage cheeses and cream cheese madeline

I read the posts about ppl who were thinking about it. I am wondering if those that were thinkng about it wen through with it? If so, how they feel about it? Madeline

I've read the back post about ppl considering laser eye surgery and I was just wondering if anyone made the decision to go through with it and how it turned out? Any complications? I like to dream about being bifocal free someday, but there seem to be the possibilit of risks and complications with laser vision corrections. Did anyone have insurance pay for it? Madeline

thanx for the info! it might not be for me either

I was looking through the NDRF handbook online and noticed a med that I had never heard of used for autonomic dysfunction before, it's called L-Dops. Had anyone tried it? Did it help? were there a lot of side effects? Thanx Madeline

HEY Jess, you need to clean out your inbox bc I haven't been able to send you a pm for a few months. Madeline

cathy, i am sending you a pm with some questions!!! Madeline

YES!!! Flop thats a great idea and now that you say it, I did that with my mom before my test too!!! I just forgot that I did that, lol. Heidi I am forgetdful also Madeline

HI Heidi!! I had to have an examination before I was approved for SSI as well. Just like you I was very afraid, I didn't think they would belive me either, so I took down my meds for about a week before and like didn't wear my stocking the day they watned to test me. That sounds bad but they need to see the natural state. Anyways I describd the reality of what I could and couldn't do honestly. And my bp was so grainy and heart was so fast, it scared them and wanted to take me to the ER.AFter my mom insisting that it was normal for me and I ddint' need to go they moved on with the exam A few weeks later I was approved. I hope this helps, the best I can tell you is to just be honest about how little you can do and the symptoms you feel Good luck Madeline

HI all!! for a few years now I have been using a stability ball for the bulk of my exercise, i sit on it and sometimes bounce. then yesterday i was looking at dr. cheney's cfs site and he said that the best exerise is called bounce back exercise where you sit in this chair that you bounce up and down, like those things babies use, kindof like what i do on the ball, but the ball is SOOOO much chepaer!! so pat if you can get stability ball and very gradually try sitting and even bouncing possibly, but start slow like 1-5 seconds and gradually work up! also for the pool, those of you that are afraid of it what about a life vest? that will keep you afloat even if you pass out, but maybe you should still have someone there ttfn Madeline

Flop, i use the normal spray kind on my feet!! i don't think that there is a differance between foot ones an underarm ones Madeline

Flop, powder does both help with getting them on and also some sweating, but it doesn't stop the sweating altogether. I also use spray deoderant on my feet to as well, you feet have as many sweat glands as your underams you know! If you let it drybefore you put them on it will help the stockings from sticking! Madeline

hi! i have been having problems with reacting to my medicaitions and are trying to somethin else that might help. i've never tried a beat blocker, but am wondering does anyone know what the bb's are supposed to do?? any advice would be helpful madeline

I agree with you mamuseh!!! a bunch of dr's should collaberate b/c each one has their own ideas

HI!! This has been bothering me for a while b/c I just don't understand.. is there more going on in our body with POTS then just lbp and tachycardia??? For a while now I have been on meds that have helped both my bp and hr, however I don't feel anywhere close to normal, so I just don't understand... does anyone?? Madeline

O girl YES!! it is horrible, I see in your signature that you take florinef, as do I and my dr told me that florinef can cause acne EVer since I got sick when I was 12, I have had problems with it. After trying everything under the sun, when I was 15 I went to the dr about it and she gave me Benzaclin and Difererin, the only things that have helped. WARNING- when I started the midorine it made my skin burn with the Differin, so I had to stop that. Anyways, these days Benzaclin does a great. Its avaible by prescription A couple of months ago a good friend became a certified skin analyt and used a machine that saw 8 layers into my skin, she said that there wasn't a whole lot of acne, but oil congestion that was the problem... so if you have oily skin, maybe you should do what she told me too, steam my face for 3 mintues once or twice a week and then use a clay based mask to get all the congestion out, then use topical treatments. This has really helped to clear up the cysts I get on my jaw I recently came across a brand called Paula's choice, only avaible online at cosmeticscop.com it has such great reviews that I am giving it a try with the steam/mask instead of the benzacln due to the fact that it is SO much cheaper then benzaclin (medicaid doesn't cover it :X) but it has only been a week so I am not sure yet, we will see one last note the best thing for spot treating is a mix of tea tree oil and water, will dry the zit right up!! I have horrible breakouts on my back and shoulders, I can't use benzaclin b/c it stains my shirts,so that one I am still trying to figure out how to treat! if you have any questions PM me, best of luck Madeline