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Mary~ What is PAF? I googled it and I can't find it. I appreciate everyone's input. The doctors and I all agree that before they can assume it's POTS they need to rule other things out, which they are definitely doing. She's lucky on one hand, because she has many doctors working on it. Many of the doctors are my doctors and are familiar with POTS. But none the less, she's barely 20 years old...at least I was married with kids when this happened to me. Thanks for all of the information. I can't even begin to tell you how much I appreciate it! Bren

I think that they will give her a tilt table test. The doctors are just trying to figure out if anything else could be causing it. Tomorrow they are bringing in a cardiologist, rheumatologist and another infectious disease doctor. They want to make sure they aren't missing anything. I am so tachycardic with my POTS and her heart rate is only mildly elevated (~111 BPM compared to mine anywhere from 125 BPM up to 237 BPM but probably averaging around 165 BPM). Does anyone know what would make her legs collapse and if there are any meds that could control it? She can't drive now because of it and she can't walk around alone because you never know when it will happen. Thanks Bren

That's exactly what happens to her. Did the doctors give you any reason for what would cause it? How did you get it to stop? Thanks!

I haven't been on this board in such a long time. You all have helped me over the years and now I am looking for help for my daughter. I was diagnosed with POTS almost 6 years ago at the age of 41. I have/had a ton of symptoms that are managed by meds and by changing my lifestyle. Anyway, 3 years ago, at the age of 17, my daughter was dx with severe case of mono. Ever since then she hasn't felt good. Her symptoms include headaches, nausea, unexplained rashes, beyond extreme fatigue, overall weakness, her bones ache and enlarged lymph nodes. Two weeks ago they biopsied two different lymph nodes in her neck. The biopsies were benign. The tissue was cultured to look for bacteria and none was found. Meanwhile her lymph nodes are still enlarged. Immediately after surgery she developed what I call "rag doll legs". One minute she can be walking along normally and in a split second her legs get so weak they dangle like a rag doll. Sometimes its worse than others. At its best she can walk but looks severely handicapped, using her arms to keep her balance. At its worse she collapses to the ground. The doctors finally put her in the hospital yesterday for testing to try to figure out what is wrong. With all of the symptoms that I've had, I've never had "rag doll legs". Could this be a symptom of POTS? The infectious disease doctor thinks she has POTS, the neurologist isn't so sure. I'm not looking for medical advice, but rather any information that I can pass on to her doctors. They all have asked me about POTS and my history but I can't give them any clues to tie my daughter's leg problem in with POTS. Thanks!!! Bren

I have a favorite quote when I feel like I need to boost my attitude: Everything can be taken from a man but one thing: to choose one's attitudes in any given situation. ~VIKTOR E. FRANKL

Hi Steph it's me Bren (no I wasn't abducted by aliens) That happened to just last week. I took Zoe out to dinner. I was wearing sandals and I kept reaching down to wipe the "water drips" off of my feet. It became so annoying that I started to look around for the cause, only to realize there was no cause. I chalked it up to another weird POTS experience. However, my hands and feet have been colder than usual and have been getting numb alot. Last week I didn't want to go swimming because it was so "cold", I was at the pool when I said that (then Jeff told me it was almost 100 F -- oops). Bren

It's late and I didn't read them all (although the ones I read were very funny) so may this has been said, but what about... When your doctor asks you why you haven't been in to see him for awhile and you tell him because you didn't feel well enough to see him

I also experience weight fluctuations. I finally found an endocrinologist who isn't patronizing. She's testing me for all kinds of things right now. If I find out anything I will share it with you. Bren PS She actually knows someone personally who has POTS!

So I guess if dysautonomia doesn't exist then I'm cured . Cool! Bren

I think Bev is great! We all know that she's not Dr. Grubb, but she does have a direct line to him . Dr. Grubb wouldn't have hired her if he didn't think she was qualified and part of being qualified is to recognize what you don't know and then to know where to go to find the answers. So if it's between seeing Bev now and Dr. Grubb months from now, I would see Bev now. Bren

I started to notice a pattern with my POTS. Almost every time it was bad enough to send me to the hospital, it was when I had my period. I told my gyno and she called Dr. Grubb. She put me on BC pills 365 days a year (no placebo pills for me, I just start the next pack). I don't get my period and although I have been to the ER on occasion, I'm no longer a regular there. Bren

Hmmm....I was 41 when I was diagnosed and Dr. Grubb suspects that I had it for many years before I was actually diagnosed. I'm 45 now and I'm still trying to beat it. The only thing that I have heard over and over again is if you are going to get rid of your POTS it usually happens within the first 5 years of developing it. But that's not going to stop me from trying to find a cure past 5 years ! I hope that I'm not overstepping my bound, but I would find a new doctor. Hang in there! Brenda

I saw this on the Cushing's Syndrome board: "Every week, we to ask everyone to check-in and say what's up with them or just "hi", something to let us know that everyone is out there and doing ok. Please try to post something in this thread during the week, even if it's just a quick "hi", so we know you're still out there." They have a special section called Week-end check-in days and each week they start a thread for that week where their members check-in. I'm wondering if we could do something like that for our board (maybe it would keep me and some others from "disappearing" from the board for months at a time). Bren

Hi Bamagirl Please don't ever think that you are alone. We might not all have the same symptoms but we all suffer from many symptoms. I made a promise to myself a long time ago that this horrible illness might take away many things from me but I will never let it take away my hope! Please don't let it take away yours! I had 2 months this Fall that I felt so lousy (physically) that I felt like "what's the point" every morning when I got up, but the point is as long as we have tomorrow, we have everything. I had an appointment with Dr. Grubb yesterday and I have a whole set of new "issues" that require more testing and doctors visits. I told Dr. Grubb that I feel like I'm climbing up a ladder and every time I get somewhat close to the top (or at least away from the bottom) someone steps on my fingers and knocks me down a few rungs. But I'm going to continue to climb back up that ladder, never giving up hope of reaching the top. Last year at the age of 59 my cousin died of MS. He was my hero (and still is)! He was a very successful musician and composer. He developed MS around the age of 29. He first noticed that he was missing beats when he was drumming (you can only imagine if you went to a doctor with that as your only symptom). Well he continued, with the help of his wife to look for an answer, until he was finally given the diagnosis of MS (he had a great sense of humor, so I can say this...he was probably relieved to know that it was MS and not his drumming abilities ). Anyways, he continued to live his life to the fullest that he was able. He was featured on GMA and when they ask him what it was like to live with MS he responded that he didn't live with MS, MS had to live with him. Once he described life as a merry-go-round, saying that he was just riding a different one now, and the music might not be as pretty and the ponies not as colorful, but as long as he was on it, he was going to enjoy the ride. According to society's standards his quality of life continued to deteriorate over the years, first he couldn't drum, then he couldn't walk without the use of a cane, then he could no longer play the piano, he could only hum all of the music that he had inside of him. but he continued to write music with the help of his wife (he hummed, she was his hands playing and writing the music in his head). Then he could no longer drive and he had to use a wheelchair, then he could no longer push the chair himself or lift himself from bed or dress himself , then his eyesight started to go, and soon after he could no longer hum all of the music inside of him and it became difficult to talk above a whisper and even more difficult to eat or drink. And yet he continued to live and work and make many, many contributions to the music world and have a wonderful love affair with his wife and raise a beautiful daughter and socialize with friends up until his last final moments. He said many memorable things over his lifetime, but two that I think sum up his attitude about his disease the best were said on two different occasions the last week of his life. He was shopping with his wife on Michigan Ave and as she pushed his wheelchair past a store window he caught a glimpse of his reflection in the window and ask her "Am I really that crippled?" A few nights before he died, while out to dinner with his wife and another couple he said, "I am so lucky, I can't believe the quality of life that I have" (he was being sincere). His wife didn't give him a funeral, she gave him a performance complete with a program. She said that she felt that it was more appropriate because he loved performances (and would expect a program ). Different musicians played songs that he had written throughout his life, friends told funny stories (many of them involving his disease) and many of us when out to dinner afterwards because that's what he would have wanted to do if he were there. To the very last minute of his life he didn't live with MS, MS lived life with him! I hope that you will find inspiration in this very true story about someone that I will always love very much and who even in death continues to be my inspiration and make me smile at the same time the tears are spilling from my eyes. We are all here for you... Bren

Interesting articles about chronic fatigue: Chronic Fatigue Daily Mail

Well, now I feel the need to come up with a new user name. Mine was just my old e-mail from when I was working. Honestly, I am way more creative than that (and fun too). I just figured at the time that it would be easy to remember. Bren

Thanks for the websites Mightymouse. The first one had a lot of good info. I need to find a awesome endocrinologist. Today I asked my doctor about seeing an edocrinologist and he didn't see the need. Well, hello, I would like some resolution to some of the issues I'm dealing with currently! Thanks for the info Ernie. I was diagnosed with osteoporosis in February. Just one more thing to add to my repotroire. Bren

I have to agree that Dr. Grubb is the best. I have a suggestion for you...call his office and ask if he would be willing to refer you to someone closer to your home. I have a toll-free number (I'm not sure if it works outside of the US) 1-800-321-8383 and ask for extension 3925. Otherwise, you can call 1-419-383-3925 (but it's not toll-free). Their hours ar 8:45 am until 4:45 pm EST (they are on the same time as New York). If you decide to come to the US to see him, I can give you a list of websites that I use for discounted travel. Just make a post that you're coming and I'll reply with information. Good Luck, Hang in There and NEVER LOSE HOPE! Bren

Does anyone know of a good endocrinologist in the Minneapolis area? Thanks Bren

The results of a recent blood test showed that my 1,25-dihydroxyvitamin D level was elevated. The reference range is 15.9 - 55.6 pg/ml. Mine was 92.0 pg/ml. Does anyone know the significance (if there is any) of it being elevated? I've been searching all night on the internet and can't seem to find much and my doctors just brushed past it without an explanation. Thanks Bren

Thanks for the info Bren

Has anyone been told that their ACTH hormone was suppressed and unmeasurable? Recent lab results showed that my ACTH was less than 5 pg/ml and unmeasurable. I'm trying to find a connection to this and POTS. Really now, how many different conditions can a person have... I've been diagnosed with POTS, narcolepsy, pre-menopausal osteoporosis, asthma, tons of allergies, high cholestral, cardiac syndrome x, raynauds,...I'm undergoing testing for mastocytosis now. I really am not a walking disaster area...I've to believe there's some underlying condition causing all of this and it's yet to be discovered. Meanwhile, I feel like I'm dying a slow, unnecessary death. SO PLEASE SOMEONE TELL ME THERE"S A CONNECTION!!!! And no, I haven't gone off the deep end yet, I'm actually laughing while I write this post, I just find this all so absurd. I'm on so many meds that the term "medicine cabinet" is actually accuarate at our house. You won't find anything else in ours except prescription drugs. I'm only 44 yrs old and I can only help but wonder what the combination of these meds will do to me over the years. And I don't take every one that's prescribed...only the ones that I notice make a difference in how I feel. So please someone tell me that my latest diagnosis is somehow related to my current condition. Thanks Bren

I ran across this and thought it might be helpful to some: "ProgressiveRx is a new company created to provide an inexpensive alternative for the millions of Americans without prescription drug benefits. Our goal is to provide the highest quality drugs and the lowest possible prices. If you or someone you know is without prescription drug benefits we are here to help. You can find out more about ProgressiveRx " Here's the link: ProgressiveRx I don't know anything about them, but I thought it looked interesting. Let me know if anyone knows anything about them. Bren

How could any doctor at MCO being ignorant about POTS when Dr. Grubb is right there? That is absolutely absurd!!!! I'm happy that you received an apology but it sounds like this doctor needs to review a few articles written by his collegues. Bren

This is going to sound really weird, but when I was pregnant I had nausa bad and a friend told me to take a few sips of "real" rootbeer. It worked! I have told other people with POTS about this and they said that it worked for them. The real rootbeer doesn't contain artificial flavoring. I think it gets its flavor from sasparilla. Anyways, it's always the really expensive rootbeer in the fancy bottles whenever I'm looking for it. Hope this helps you. Bren