StaceyYount

Hey everyone Thought I would update you on how it went. Well one disappointing thing is that I did not see the EP I just saw the cardiologist but he was knowledgeable and was going to consult with the EP. Funny story when the nurse did my blood pressure he was jabbering away and then saw my hr was 120 just sitting there and he said is that normal? And I said you should see it when I stand up and he said thats ok it going fast enough now! So doc came in and said well you have quite the extensive medical records ..note: I always take a letter with me that summarizes everything how I first got sick, the dx, the weight loss and what is happening now. Along with copies of tests I find it reallly helps cut through the ok so then what happened after that! He said that he wanted to do 2 tests 24 hour holter monitor and echo and that there was no need to repeat TTT.(thank goodness!!) He wants to try beta blockers again maybe in combination with proamitine ( have tried all sorts of bb and proamitine but never together) and that all though he has no magic pill he thinks he can help and says we need to slow that HR down. So we go back in 2 weeks. He was nice at least and we will see. At least he had heard of POTS, my cardiologist here says well I have only seen 1 other case.

Ooh thanks very much! And Tessa you made my day AHHHHH Shahrukh!! Ahhhhhhhh! I love Bollywood movies! Don;t get me started though!! Do you watch too? And i will be thinking of you on Friday!

Ok finally after 2 bad headaches tomorrow is the day so if you can send some thoughts my way that would be great. Just hoping the doctor is helpful and it is not a waste of time!!! Will let you know how it goes!!

http://img293.imageshack.us/my.php?image=committeelgpz2.jpg Seated (clockwise): Drs. Anthony Komaroff, David Bell, Nancy Klimas, Leonard Jason, Charles Lapp, Lucinda Bateman, Paul Cheney An announcement from ProHealth Founder Rich Carson: The CFS Name Change Advisory Board - whose combined research and clinical experience totals more than 150 years - met in Florida January 12, and reached a consensus agreement that a new name should be adopted for Chronic Fatigue Syndrome. While it is certain that no name will please all patients, the group feels that the new name they propose will improve the legitimacy of the disease, and remove the stigma of having a disease with 'fatigue' as the primary descriptor. Their report follows. A group of noted CFS researchers and clinicians met January 12 in Florida to discuss whether 'Chronic Fatigue Syndrome' was an appropriate name for the disease, and to suggest an alternative name if necessary. Patients and CFS clinicians have long held that 'chronic fatigue syndrome' trivializes the serious nature of the disorder, and have called for a change of the name first adopted by the CDC in 1988. The impetus for assembling the group was the belief that a panel of the world's leading experts could provide legitimacy and scientific credibility to patients seeking a new name. The committee, called "the CFS Name Change Advisory Board" by its organizer, CFS patient Rich Carson, included Drs. Lucinda Bateman, David Bell, Paul Cheney, Charles Lapp, Nancy Klimas, Anthony Komaroff, Leonard Jason, and Daniel Peterson. Dr. Peterson was unable to attend the meeting, but was consulted via telephone afterward. Committee members agreed that CFS downplays the severity of the disease and is hurtful to patients, and discussion focused on alternative names. The majority of attention was spent discussing 'ME' - the name first used to describe the illness in an editorial published in The Lancet in 1956 by Sir Donald Acheson, MD. 'ME' has been used in many countries, including Great Britain. 'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate. Recent scientific advances point to the usefulness of the ME label, as brain pathology with often painful consequences, especially in muscle, is increasingly documented in patients with this condition. The group recognized that dropping CFS completely from a new name could cause problems with disability and medical insurance claims, and recommended that 'CFS' should accompany any new name, at least for a period of time. It was acknowledged that CFS currently has some name recognition, though according to the CDC, less than 20 percent of the patients have been diagnosed. The researchers expressed their belief that the term 'ME/CFS' (or 'CFS/ME') is diagnostically accurate and, unlike CFS, is not pejorative to patients. It was also noted that this move is consistent with events occurring in different countries, such as Canada, where 'CFS' was recently changed to 'ME/CFS'. In a recent related event, the board of directors of the International Association for CFS (IACFS) voted to recommend that the name of that organization be changed to the IACFS/ME. This motion is currently being voted on by its members, and if approved, the name of that organization will soon be changed.

Well been put off a week cause a headache decided to make an appearance! So will let you guys know after next Friday thanks again!

Excellent thanks everyone!! I hope he is knowledgable too and maybe can shed some light on why tachy is worse and weird ekg/echo readings. Gena, Thanks, i thought you were seeing or had seen that doc at Mayo and that will be next place if we get no new ideas from this guy! Thanks for reminding me about him!!! I will let you know how it goes. You would think after all the docs I have seen I would get better at not being nervous but nope! All I guess I can do is have hope and we will see maybe he is the one hai na? (sorry some hindi slipped in lol) Thanks again!

Got my t shirt this week.Yeaaaaaa Really nice job!!!! And now several family members have ordered shirts too!

Hey all! On Friday I have an appointment to see an electrophysiologist which you would think I would have seen after 11 years with POTS but got the diagnosis from Mayo so never really saw the need. Anyway the tachy has been much worse lately and my ekg at docs on Thursday showed some changes (but he did say could be due to the tachy being worse and terrible cough I have had for awhile now) and the echo results from last year that my primary felt should be checked out. Anyway my question is what should I expect? What tests will they run? I am hoping they have knowledge of POTS but we will see and i guess I am just nervous at having to go to yet another doctor go through telling this long history and well you guys understand. So any clues of what to expect and best way to get most out of this visit would be great.

Hi Corina, Hugssss! Thanks so much cardiactec I was hoping you would see the post and could explain. So would that cause any symptoms or is it just something that my heart does? Thanks again! I am sorry you know how I feel and hope yours is better soon too!

Hi! If anyone can explain this to me...I have appointment next week with my doctor but since we picked up the report form cardiologist today I would like to know sooner if I could. It was found on a Echo that was done last year,becuase of doctor confusion and stupid doctors we never got the report. My tachy has been worse this past year and even worse the past few weeks. But anyway if anyone can shed some light on what this means I would appreciate it. Thanks!

http://www.immunesupport.com/library/showa...&T=CFIDS_FM Ok this is on a web page that sells supplements so take with a grain of salt I guess. But since it did seem to make sense I thought it would be a good thing to share with you all.

Glad to see you are home! Hope each day helps you recover from this horrible ordeal. I am sending strength and thoughts and prayers, love and many hugs your way!!!

Thank you all for your kind words and support it really helped! I wish you all many good days and soon that they be all good!

Thank you all so much!!!

11 years how can it possibly be 11 years??? Another year of this stupid illness has passed by and inside I am just screaming inside...11 years when is this going to go away. It is so hard to realize what my life once was and what it is now. I soo want to go and be and do. But my husband said a really great thing he said that you know it is not a bad life...we are together, we are still in love and you have friends and family that love and support you. It is not what we envisioned but it is ok for now. Just watch out when you do get well huh? And that is sooo true. It just has been a kind-of rough patch lately, my energy has not been good and the headaches have been bad, the tachycardia has gotten worse new things crop up... so it is hard to be strong and keep hope. But then I have ok days and I realize I can do some things and I am learning new things ...(naii cize.n...like learning Hindi.. long story lol.) I guess I just needed to say hey my fellow POTsies, if you could send me a little extra strength and love it will help me get through. And tomorrow I will begin the fight again!

I have not heard about care at Cleveland Clinic ( seems horrible if they said that to you Dean) but Mayo clinic in Jacksonville was the one who diagnosed me and some time ago one of the members was talking about a great docotor there. I ma sorry I cannot remember who it was but I think I have the name some where I will look it up! For me they diagnosed my POTS which was great but the follow up care was not so great. I too am looking for a good electrophysiologist so if anyone has a name I would be thankful.

I see an Traditional Chinese Medicine Practioner every week. And I find that though acupucnture has not cured me or helped me walk better yet according to their theory for a disease to get this advanced it must have gone very deep into the system. It has helped with my nausea and eating and I always have more energy the day after acupucnture. We also get treated with the herbal prescriptions. My doctor has a PhD in Chinese medicine and the herbs they use have been used for thousands of years and each formula is made individually. I had hoped one treatment and ohhh i am better but slowly it has helped and I think it will jsut continue to help me improve.

Hey! We jsut started getting and using Recharge..we get it form our health food store though Whole foods carries it. It is much better than Gatorade for me though I still dilute it a bit. Here is about it on the website: http://www.knudsenjuices.com/products/deta...p;productID=245 "Whether you're an athlete in training or a mom in transit, your daily routine saps vital minerals and fluids from your body. Recharge was the first all-natural sports drink on the market. Now, Orange, Lemon, Grape, and Tropical are also available in convenient 16-oz. plastic bottles. Each 8 oz. serving of R.W. Knudsen Family's? Recharge provides pure, filtered water to keep you hydrated, flavorful fruit juice to encourage gulping, and sea salt ? to replace the crucial electrolytes lost during exercise. It's the natural solution for today's athlete." My Doctor of Tradtional Chinese Medicine reccomended it to me and we both love it! Hope this helps!

OOOOOOOOOOOOH I am sooo sorry that you ran into one of THOSE doctors...Unfotunately we have all run into one of two of those throughout this stupid disease...Just remember not to let him make you doubt yourself..keep searching..find a new docotor and I will keep you in my thoughts that you find some answers soon. Sending you hugs and say I understand and I amm sorry...soemtimes doctors are jsut the unbelievable!!!!

Hi! I have chronic joint pain too but know one has found out why...so I jsut put it down to POTS...2 things flagged in my mind when I read your post..Have you been tested for vasculitis? The chronic follucilitis is the thing that flagged it in my mind..plus you can get chronic joint pain... here is good web site for research http://vasculitis.med.jhu.edu/whatis/whatis.html "burning sensation when laying down (on the area that touches the bed)"..that is something maybe a neurologist could look into..that does seem something that a nerve misfiring might cause..POTS can cause joint pain but I would look into other causes too adn especially the vasculitis. Hope this helps and sorry you are having this! Stacey :-)

me too me too!! Amazing even after all this time i can come on this board and see something I have been dealing with and thought it was just me and see oh it part of this POTS stuff we have to deal with...I get so hot at night I kick off all the covers and then I get so cold I start to shiver...it drives my hubby crazy...I never seem to be the right temperature...but sleeping is the worst!

People ask, "How can you be friends with someone you've never met?" I tell them, " You've never been online I bet!" It's something people offline will never understand. You open up your heart to friendship with your typing hands. It's a world full friendship at your finger tips, there is so much online, it only takes a heart to reach people with your touch. First you start out online, surfing all around. Next thing you know a great friend will be found. You will chat a lot and surf cyber space. Soon it will be your second home, a comforting, special place. A Friend to share your dreams and your tears and to help each other wipe away life's fears. You will share life together and help each other along You will make it through bad weather because friendship is so strong. No matter how far apart you go, your keyboards will keep you together, and in your heart you will know you don't need a face to be a true friend forever. So, How do you explain this to people who've never been online? I guess it takes a gesture of friendship & a little bit of time. So let's start by sending this around and passing our special touch. A smile, a website, a gesture starts it all becoming friends doesn't take much

Thanks everyone..I think I am still stunned...Thank you for all your support! The first PCP we tried was his recommendation adn he cancelled 2x and then was not there..office closed on 3rd. So we did try that too but good suggestion thanks. Well am goin got go to ENT and then try again. Just makes me want to cry.

Ok This is just to share, some of you know I am going through a bit of a hard time finding a new doctor since the traitor (old PCP nice nice doctor) left his practice. So Friday I had an appointment with a new PCP. He was at a clinic that I had gone to before (2 minutes away from house) and one of the nice things is that they do a lot of tests there so you don?t have to make separate trips. So we thought well since we are just trying to find someone.. he is as good as any (HA wrong thought!!!) So while we are waiting I see this scowling doctor walking around and I hear him say God when is this day going to be over. (and in my mind..not him please not him) I will call him SMDoc (scowly mean doc) from now on. So we go in room and wait and wait and wait. Then he walks in SMDoc and says to Jim you are and before Jim finishes he cuts him off oh husband. So then not to go into to much detail but his whole attitude was that I was infringing on his time and he was very very curt and rude and I was so unhappy and all we were talking about was the sinus infection. Then he says do you work..and I said well I have another illness . Jim dropped off a letter kind of summarizing everything for you. There is not letter here...we gave it to girl at front desk Well it is not in your chart....ok it should be?? So then he leaves to order test and check on letter, a nurse comes in and says what does the letter look like and I said a letter my name on top..Dear Dr...Ohhh well who did you give it to...arghhhhhhhhhh! and Jim leaves to go get letter cause they lost it. So then nurse comes in and she says ok we are going to do a Pulmonary function test and you will have to stand. I said I can?t stand... And so she gives me a look, and looks at chart... then says well then you won?t be able to test very well...then after that and blood she says well next is x-ray it is just around corner you can walk and I said no I can?t not unless you want me to faint on you. So she loudly gets wheelchair and then wheels me right outside door and says seee...by now I am almost in tears. So I didn?t say anything but the x-ray room is down the hall so it was not just around corner and I have to be wheeled in and then they want me to stand of x-ray and again I have to say I can?t and tell them that at hospital they use a stool...ooooooh I guess that will work. While I am waiting for x-ray I hear someone very loudly say she didn't;? need that test there is no way I could have exhaled that strongly no way..DID I ASK FOR THE TEST NO! DID IT MAKE ME FEEL HORRIBLE YES. Oh yea and Jim had to tell them not to do the second part cause it makes your heart race and they said well it does that to everybody and he said but do they all have heart condition (he is a bit mad at this point) And they see the wheel chair if I had no legs or something would they say these thing?? So then doctor comes in and says is this the letter and Jim says well it is a copy of one like we did for you I just did not have your letter on my computer...it is addressed to someone else SMDoc says... idiot. So then Smdoc says I have no idea what to do with you. What do you want me to do. At that point I wanted to scream leave! But Jim said well you want some treatment for sinus infection and if you have any thoughts on the POTS...WELL SMDOC says that is is a syndrome there is no cure I have no magic wand or magic pill...ARGHHHHHHHHHHHHHHHHHHHHHHHHHH So after much more meanness and us just trying to get him to listen and to do something...He?s like well I?ll send you to ENT anything else ...and a little more talking and he flipping very annoyed pages back and forth and finally getting some respect for Jim. One of the greatest things is that you know how they talk down to you like you are so stupid...well Jim just starts talking about things and they say oh you know your anatomy and he says I better I teach it and Microbiology. At least then he gets a little more respect. We finally get treatment for sinus infection, a referral and then some other blood work he said he would order... he finally left and then it was taking 20 minutes to check us out and Jim finally just threw the co-pay and said well come back for anything we need I've got to get her home. Jim said later it might not have been so bad ,we have met many curt doctors but this guy was just mean. And he was...my question is why if these people dislike and distrust patients so much why do they get into the medical field? I mean this was one of the worst and believe I have run into some doozies dealing with this. But still I don?t understand how medicine has become that doctors are gods and we are the poor mortals who must be lying to them and wasting there precious time. One day I am going to go to Medical schools and I am going to lecture and say have some empathy, have a heart and treat each patient as their own person and well it might not help. Mukie always lectures about this in his classes and says have some compassion , people are all ready scared and they don?t feel good.. help them don?t cause them more suffering. Sorry but had to share this with you guys. Obviously he is no longer my doctor and we have decided to go out of Titusville for our next attempt. It should not be this difficult to find a caring compassionate doctor. Stupid traitor why did he leave his practice??But onward and upward and hopefully to a new doctor who has a clue in his or her head. Or at least willing to help! End of rant bring on the the insurance list hahahahahah!

Thank you all so much...yesterday I was feeling so sad and thinking ok maybe I don't try enough, I don't do enough, maybe they are right but then I realised I was to tired even to talk on the phone to anyone about this and the thought of having to go anywhere just made me want to scream and then I read all your posts and I realized that this is not me being lazy, or not trying this is me and how I have been since 1995. You know it almost feels like I have started at the beginning again..when I first got sick and I kept havign to "convince" them that i really could not do things and that each day is just a trial...and you know that just is maddening and frustrating and sad. My gran said the other day I feel awful, I feel as bad as you...but she had just come back from driving herself to Orlando and had gone to lunch and was tired. And I thought ok on the day that you say you are tired from watching tv is the day you can say I feel as bad as you. unicornisis (love your name by the way 2 of my favorite things!) I need your machine so pre-order it..thnks! You guys have given me the strength back inside myself to know that on days I do feel a bit better I do try to do more but on days when I can't I can't. And the support and wish this was not true the knowing that you guys understand and feel the same and have gone through the same things is just so much help to me. I think the greateast gift we have even if we are ill is to know we are not alone and that others feel like you and that the reminder it is not your will that is keeping you down it is your body.... THANK YOU ALL! dawgtied I am soooo sorry about your son and hope that all will be ok...hugs and sending good thoughts your way!