Clairefmartin

I was pregnant when I weaned, but I had MASSIVE vertigo for over a month - and learned that they actually treat vertigo and Menier's disease (which they misdiagnosed me with) with Klonopin! I felt terrible for months, but was also very sick and pregnant, so I dont know what's what - but I do know the vertigo was definitely Klonopin related.

I am back on it and they ramped up my dose while in the hospital and I am really annoyed and scarred about weaning, it was terrible last time! I hope you get some answers and relief!

Claire

love this article, as it stressed how serious pots is!!!!! Go her (i'm totally jealous!)

I am constantly reminding people that POTS/dysautonomia is a spectrum, just like Autism or MS, or many other diseases. There are lots of people that do get better, and they are not online - they are out living! So we don't alway hear from them, and I did the same when I had a few year period of wellness, the online stuff got very depressing so I stopped going on the forums.

I'm so sorry!!! Sending you (((hugs)))

I struggle with this because of my past PICC line causing all the DVTs/heart thrombus/Pulmonary Embolisms (12+), so I get VERY scared with chest pain. I have kind of learned what is the "norm", and if anything is out of whack I call all my doctors, and if I get at least 2 or 3 that say "go to the ER", then I go. And I can say, "my doctors told me to come," why, and I give the hospital their names. But my local ER knows me by now - how sad, so they usually give me fluids, make sure I'm not having another clot, and send me home.

In my opinion, you have to go with your gut. There is nothing wrong with going to the ER if you feel something is wrong, amd if you are ok and it's something a doctor needs to deal with in an office setting - you will have learned that and will know for next time.

In my opinion - times that are vital to get to ER or call 911: you hit your head (a lady with POTS recently died from a bleed out at home when she fainted - it's a BIG deal, even for non POTS people when a head injury occurs), any issues with a port or line (swelling, fever, flu like symptoms), or your HR and BP being out of their normal range (which is different for everyone). These are only my opinions, I am not a doctors and am only speaking from experience.

Best of luck - and I hope you find some answers!

Claire

Anna (and others), this is kinda long, but a prtion from what I wrote about regarding this on my STOP POTS blog (i cut and pasted it, pardon the formatting issues), there is more on my site, but this explains the issue and the implications:

THE GRINCH PROBLEM

There is a researcher out of Texas named Dr. Levine who proposed that POTS be renamed The Grinch Syndrome. He did this based on his study that was published in the Journal of American College of Cardiology in 2010 called Cardiac Origins Of The Postural Orthostatic Tachycardia Syndrome. The presumptuous name of the study is the first clue as to how preposterous this "study" and its "conclusions" are. Levine and his researchers claim that, "These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective non-drug therapy for POTS patients."

So he claims that a small heart size due to deconditioning is causing POTS. He bases this claim on a study comprised of 18 POTS patients, 13 of which had small hearts, who were compared to 16 healthy control patients. He chose those 18 patients based on a "mysterious" (insert sarcasm here) new method of studying POTS patients , which are a mixed bunch, being that POTS is a syndrome known to have numerous causes.

His study group specifically did not include patients with autonomic dysfunction, and in fact the study states that, “ All patients met the inclusion without exclusion criteria for POTS”. POTS Grrl actually emailed Dr. Levine, and he was kind enough to respond, to ask what he meant by that statement since we could not find it in the paper he cited.

He responded by noting the following:

This definition was contained in his NIH grant application and is as follows: "[p]atients with postural hypotension secondary to autonomic neuropathy (diabetic, amyloid, familial), spinal cord lesions (syrinx, traumatic), or degenerative central nervous system disease (multiple-system atrophy, pure autonomic failure, Parkinson’s disease) will be excluded. Similarly, individuals with hypotension stemming from identifiable hypovolemia, dehydration, hemorrhage, vomiting, medications (a- or b-adrenergic antogonists, diuretics, venodilators), or endocrine abnormalities (Addison’s disease, hypothyroidism) will be excluded."

So (in plain English), he excluded the vast majority of POTS patients, and based on his small study size, of which ONLY 13 had small hearts, he proposes to rename the entire POTS population. And not just to rename them us, but to give POTS a name that is negative, degrading, and actually a false representation of the majority of POTS patients. He excluded anyone with known hypovolemia (low blood volume). That is a TON of us, no matter the underlying cause. Endocrine abnormalities excludes the entire Hyperadrenic POTS (also know as Hyperadrenergic or Hyper POTS) population. About half of POTS patients are known to have some autonomic neuropathy involvement (see the Neurology Supplement from 1995, written by Dr. Low who first defined POTS, and the Autonomic Neuroscience Consensus Statement from 2011).

Thus, if you design a study to exclude significantly more than half of the known patient population by excluding those with autonomic neuropathy, hypovolemia, and Hyperadrenergic states - your study is not representative of the entire patient population.

Levine's actual study methods were fine and met general scientific standards for conducting a study to be published in a peer reviewed journal of esteem. We all agree that exercise is a good and viable treatment option for POTS patients. His study was fine for the purposes of identifying the underlying cause(s) of POTS in this specific subset of patients with small hearts, as eliminating patients with known causes of POTS from the study will help focus the research on those with causes that have not been identified yet. However, you cannot credibly draw conclusions about the cause of an illness for the entire patient population from a study population that does not include at least half of the known patient population.

How was a study with such obvious flaws in its conclusions published in such a highly regarded medical journal? Why have no leading researchers in the POTS and Dysautonomia world spoken out? Your guess is as good as mine. But our fundraising, insurance, and hard earned dollars go to these doctors, and it is time they do the right thing. Maybe they thought this whole Grinch thing would just go away - but it has not - and the events of this past week are a direct result of this controversial, ridiculous, and unscientific study's conclusion that POTS is caused by a small "Grinchy" heart. And on top of the ABC news situation, they are still touting the Grinch term at conferences, as is evidenced in this write up of a luncheon last month where Dr. Fu (of Levine's team) actually used the Grinch term not just in regards to POTS, but to all women! See Expert: Women at cardiac disadvantage, and you'll see in that Dr. Fu apparently thinks "the reference to a Grinch’s heart was comparing the heart size and blood volume of women to men." so women are Grinche's because our hearts and blood volume are small when compared to men. WHAT??? So now I'm offended on two fronts; as a POTSy - and as a woman. And for the record - my heart is completely normally sized and works perfectly, at least when I'm laying down, as evidenced by over a dozen ECC's over the last decade.

JUST TODAY (3/5/12) a new article was released by About.com (finally!) with Dr. Richard Fogoros speaking out against the Grinch terminology. Here's a link to his article.

POTS - Who's The Real Grinch?

By Richard N. Fogoros, M.D., About.com Guide March 5, 2012

THE ABC PROBLEM

Here is a portion of our posted call to action (by myself and POTS Grrl), which sums up what happened with ABC:

ACTION ALERT-Tell ABC NEWS Not to Disrespect POTS Patients

Last night (2/28/12) ABC World News with Diane Sawyer did a segment on Cardiogenic Syncope. They showed a preview clip of tonight's segment with fainting astronauts, and we know that is going to be about POTS(Postural Orthostatic Tachycardia Syndrome). Fellow POTSy(POTSGrrl) called ABC News tonight and spoke with the reporter who prepared the POTS/astronaut story. Claire from STOP POTS called as well, and spoke with the reporters assistant.

After she told her she had POTS, she said something like "you mean Grinch?" This means that ABC may be doing a story on POTS tomorrow night and calling it the dreaded Grinch Syndrome- a degrading and negative term invented by one doctor who did a deeply flawed study on a mere 18 POTS patients, and decided that all POTS (in the million+ person POTS population) was caused by deconditioning, and that all POTS patients have small hearts like the Grinch. It is disrespectful, disgusting, and more importantly, WRONG. Credible POTS researchers have known for years, and have published numerous studies, noting that POTS is caused by many different ailments; neuropathies, autoimmune diseases, EDS, viral infections, MCAD, pregnancy, head/neck traumas, Chiari malformations, post-viral onsets, pregnancy, etc. Moreover, as most POTS patients have had detailed cardiac imaging, we know that most POTS patients do not have small hearts.

We have been planning and mobilizing to campaign against the use of this negative and inaccurate term on a nationally broadcast network show. We are reaching out to all the major Dysautonomia related organizations, and I have sent a lengthy email directly to the producers of the show through various family media contacts. But we still need your help!....

........See the continuation and full text here.

So we posted this on our blogs, sent out emails to other bloggers, and I posted it on every Facebook site I could find and asked others to re-post. I started tweeting. You started tweeting, You started posting. And you (and I) complained to ABC! The response and mobilization of the POTSies, family, and friends was immediate - and amazing. The email mentioned above was sent out by a family member of mine, who has media contacts all over the world. It worked it's way to the producers of the show, and we were told they contacted Mayo, Cleveland Clinic, and Vanderbilt for information. This all took place on the day of the broadcast.

In my opinion, and only my opinion, based on what I know of how media works - the segment was ready to go and completely based on the small Grinch heart cause of POTS. I think our (our being the entire POTS community that mobilized) efforts were the reason they did not use the specific term, but they still conveyed the idea that POTS is caused by a small heart. They did end the segment with a short blurb saying that POTS has other causes. But within the originally aired program, they used the word CURE, the word EXERCISE, and talked about SMALL HEARTS. They featured dramatically fainting astronauts, and a lady on an exercise bike. They may have been trying to tie into the NASA theme, but unfortunately what was conveyed to many was that POTS is caused by deconditioning and small hearts (aka The Grinch Syndrome), and we can all just hop on our exercise bikes like the lady in the segment and we'll be cured.

The reality is that POTS and Dysautonomia patients already face an uphill battle. Our illness is hard to understand, hard to explain, and most doctors and the public don't even know it exists. We get dismissed as having anxiety, or being lazy, or being hypochondriacs - until we get to the right doctors and are validated with a diagnosis. Getting to those doctors sometimes takes years. For me, it has taken almost a decade. I have had a wonderful Internist that read up on POTS and has been trying to find me the right local doctors (with no luck) for years. I have seen countless local specialists who know nothing about POTS, and was hospitalized for 9 months last year during a pregnancy that caused my POTS to go bonkers. I believe the care I received made my condition worse - because the medical professionals didn't know anything (and I guess were too busy to find out) how to care for someone in my medical situation. I almost died because of that, and almost lost my baby as well. I am left home bound and very often bed ridden due to the 9 months of forced bed rest, when if they had just listened to me when I told them I couldn't breath, and it was not "just my POTS," it was actually over a dozen Pulmonary Embolisms, we may have avoided some of these issues. If they had listened to me about getting up and moving (like my wonderful Physical Therapist at John Hopkins did for the 3 weeks I was with her) and read up a bit about bed rest being the worst possible thing for POTS, I may be in much better shape and not passing out after being upright for 90 seconds. My point is that I, and many others, go through enough having dysautonomia - it is a daily physical, mental, and emotional battle - and the thought of my syndrome being renamed after the Grinch is terrifying and infuriating.

THE FALLOUT

So as a result of the "Grinchy" heart story playing out on ABC, even without using that term, damage was done. I am fortunate that I have wonderful and supportive people in my life that have read up on what I have and grasp at how hard even simple tasks are for me. Or they try. But not everyone else does. So the fallout from this report was immediate. I started hearing from people about responses from family and friends telling them they just needed to exercise and they would be cured! Or that they must be lazy to have had POTS for so long and not be cured yet. Or even well meaning people worried about their small hearts, and did they have a recumbent bike yet? Here are some exact quotes from Facebook boards, groups, the comments section on ABC, and via email:

"Get a load of this...just found it posted on my wall. whew boy....."Hi ----name deleted----- ABC news tonite reported that nasa has come out with an important study on POTs syndrome including things that can be done to strenghten or enlarge the heart muscle...love you"

"It is hard enough to get doctors that don’t know anything about this condition take you serious but to add media that misinterpret this condition makes it hard for any of us to be taken serious. One of my own family members called after this was aired and told me they can’t me serious anymore and can’t believe I would lie about my condition and that I need to get off my couch and get exercising so I can take care of my family properly. I wish it were that simple but it is not and now I look like a liar to my family and friends. Please make sure if you are going to mention a condition you get the information correct because you know who is going to be effected by your interview/articles."

"I know just about everyone is posting about this but I must say I'm somewhat pissed and discouraged about ABC's story tonight. Yes pots is getting media coverage but the wrong type of information is being given. This is why most doctors think the way that they do about pots. This is why my neuro takes pots as joke. After watching this my boyfriend looks at me and says "See, what have I been telling you about exercise" :-/ "

"I'm not going to play the show for my husband for just that reason - he'll say "See, I keep telling you that the one thing you don't make the kids do is exercise regularly". I don't want to hear it -- I can only make them do so much!"

"Just got a call from my grandmother saying she didn't know I had a small heart and wondering why she never heard of this before today... She also wants to know why I sent her all that information a few months ago if it wasn't true. That was so upsetting to think my grandmother thinks I am lying to her and I just made everything up. She told me she will still love me but will not take me serious anymore and I better getting exercising like the doctor said so I can take care of my children again and stop being my mother. I can't believe that really just happened."

And so on, and so on. The worst was a post by the sister of the woman featured on the segment:

"My name is Leigh Ann Poole. My sister, Kathy Chandler, and I were at the Cleveland clinic for a week of additional cardiac and neurological tests when she was asked to share her story about POTS. This has been a very debilitating condition for her and many other people; and so she agreed to share her story and even repeat tests that were difficult and painful for her – for the camera – so people could learn and understand more about this very life alternating diagnosis. In fact this taping took about 6 hours to film and required her to be stuck 3 additional times for an IV. I accompanied her, often pushing her in a wheelchair, and watched all of the videoing for this story. So what happened? ABC used a few seconds of her story, took it highly out of context, and made her out to be really without disability and even pronounced her “cured” – even when they knew that she hadn’t even received her test results back to determine the cause of her POTS (and there are MANY). Further – she has submitted several responses to this blog that have not been published (even though posts before and after her submission were posted). She has friends and family now thinking her “prescription is simple” and all she has to do is exercise – oh and of course since ABC has declared her “cured” that she can now go back to her everyday life. People are even posting on this site that she doesn’t even have moderate POTS because ABC has made her disabling condition of extremely high heart rate (160) and extremely low blood pressure, extreme fatigue, blurred vision, etc out to be that she is just a “chronic fainter” who is now cured. Very disappointing and an outright total mischaracterization of the facts. I decided to try to post to see if in fact ABC will post my comments since they apparently will not even let her defend herself from these lies on a blog.

- Eye Witness

I would also like to add that we could not be more happy with the very thorough care Kathy received from her GREAT doctor – Dr. Jaeger – and the Cleveland Clinic. They truly are wonderful and hopefully will be able to help her.” (http://abcnews.go.co...comment-1050902)"

THIS STORY HAS BEEN DAMAGING TO MANY, AND ABC NEEDS TO DO THE RIGHT THING AND CORRECT THEIR BAD REPORTING.

Question are you not able to be upright at all? Are you able to use your muscles? I was wondering why the type of transport you require.

Thanks, and I hope I get the same in depth Dx you did! He worked with all the autonomic big wigs like Chemlinski at the Cleveland Clinic, and has a great patient rep as being a good diagnostician.

The pooling in my right leg is so severe that if I have my legs down at all I pass out. I was hospitalized for 9 months during a crazy pots pregnancy and made to lay on my left side almost the enrtore 9 months, so now 7 months later after giving birth - my orthostatic and excercise tolrance are down the drain. My muscles (under a nicely developing layer of fat ) are strong, I just have to be reclined most of the time. I can walk about 10 steps before I hit the deck, and stairs are the devil. We live in a temporary apartment near the hospital, and there are stairs. Hense, the med transport.

thanks!

I wrote in detail about the ABC news situation and the scientific issues with the Grinch study. It is not about the name being an issue with anyone individually, it has to do with the already negative perceptions many doctors have about POTS and how it is dismissed casually as not a big deal. Medscape defines POTS as "a benign condition". This is not ok.

Here is the link: http://stoppotsvirgi...orting-and.html

I don't make any money from my blog (it would be nice if I did!), but I get ALOT of emails, and posted some of the responses people recieved from their families as a result of that report and how we were directly involved. It is heartbreaking and motivates me to actively solicit the cessation of the term Grinch. And to make silly videos to get the point across as to how rediculous it is!

We spoke with Levine directly, and he has no plans to stop. Many, many patients have contacted him and his lab to no avail. His research is sound, but his conclusions are not. Its all in the article, I'm too tired after yesterdays loooooomg appointment to rewrite it

This thing about Mayo pushing POTS kids to go to school and last week with the cheery ABC news story about the lady with POTS (you see her on a bike, then she's better) and then Dr. Levine's response to Dr. Forgoros about the name Grinch Syndrome and how we just need to "have a sense humor" about this ... it's all just making me really angry. This is a serious neurologic condition that makes everyday functioning a nightmare. WHY isn't this recognized and why isn't it portrayed that way? I would feel better mentally, emotionally if there was some recognition of this. Sorry, having a bad day and had to get it out. I'll try to be happier tomorrow.

Naomi- do you have a link to the Mayo thing?? I'd really like more info please. Thanks!

Claire

And myself and a few others are working directly with doctors to deal with this issue, if you want more info PM me email me at claireification123@gmail.com.

And not just with silly videos, much more involved, that is just my pet project!

Claire

Thanks everyone! I feel like I've won the dyautonomia lottery.

It will be at Sentara Norfolk General Hospital, in Norfolk, Virginia (next to VA Beach, which is where I move back to in a few months, we only moved to Nirfolk to be close to the hospital during this mess. Still only 15-20 minutes away). Here's the link (they are still getting set up, not sure if they are taking appointments yet):

http://www.sentara.com/Doctors/Neurologist-Kamal-Chemali-MD/Doctor-ID/1300337

My hope is that he will train up a few more docs or import some from the other clinics and really make this a quality center. The hospital is closely connected (as in next door) to a medical school, EVMS, which actually has great doctors and some fancy famous research docs (like my Endo- who discovered the gene for diabetes), so there is some good potnetial here. We'll see! He wanted to hear more about my thoughts on what was needed, I slipped in that I am part of a few NPO's and patinets groups, and he wanted to talk more. Yay!

I am the weirdo - I had nothing. Only mild Raynauds as a teen. Until I had spinal surgery in '99, I played every sport, was working 2 jobs while in school full time, and partying like a rock star. Then I realized my back ws hurting, ignored it for months, then finally went in and had "emergency" 10 hour surgery, as my spine was almost completely dislocated at the L5,S1.

Then: massive GI issues, but was still very active for a few years and getting my ms/doctorate while swimming 5-6 hours a day scuba diving, then OI/POTS out of nowhere, then waxing and waning autoimmune and POTSy stuff that disrupted life and changed my career paths, but I pushed through. Then the crash that I have been in since getting knocked up with my latest (and last) child.

Bleh.

So after a 3 1/2 hour wait, and an hour visit, I'm finally home from seeing Dr. Chemali and done eating dinner. So for anyone who cares here it is:

He is really nice, and is opening an autonomic center 2 blocks away from me within the next month!!!!! I almost passed out when he told me. SO hopefully no Vanderbilt, because he is getting every last bit of equipment they have there (except the blood volume testing stuff). This s really good news for everyone on the East Coast, as we are right in the middle, and way closer than the other big 3 centers!

On a personal note - he said "you have POTS plus" which I knew, but loved finally hearing. He was not threatened by my input and complimented me on my having read so much literature, which was nice - no ego issue with it. He said I have Autonomic Neuropathy causing my POTS and we need to find out why (LOVE), and he thinks it is autoimmune. So I'm getting loads of blood work, another (non chemical) TTT, and biopsies to start. He is testing for amyloidosis, Sjogrens, Diabetes (yuck), and a few really rare ones that I don't remember. Once the lab is set up in a few weeks, I'm one of the first in line for a full work up. And - he even will talk to me over the phone instead of making me come in every time for results and follow up, since I have to go everywhere by stretcher via Med Transport, which is expensive. I am still in the testing/follow up/wait/repeat mode - but that is ok - after 10 years I may be closer to an answer, and some treatment for my more recent extreme yuckiness (over a year of it!).

All in all - he was very nice, listened, we have a plan, and I am happy. He was rushed, as it was 6 PM when we were done and he was going on call, and they apologized profusely for the waiting, so I totally forgive him because his bedside manner was so great and HE IS OPENING AN AUTONOMIC LAB IN MY NEIGHBORHOOD! So he gets an A+!

That's what I said - I'll deal with a few more scars for some answers And I don't think there is anything wrong wih demanding the tests be re-examined. Let us know what you decide to do!

Claire

Naomi- I am going through the same thing with lab results leading to more dead ends - it is VERY ddisappointing to say the least!

I was just discussing the SFN test the other day, as I am hoping to have it done, and I was told they biopsy right above your ankle, your calf, and you upper thigh. Did they do that will you?? I tend to agree withe the "patchy" issue, if the biopsies were not done in the same place, the results could be different. I like your plan of going back to doc 1 and getting a NEW test.

Best of luck, and keep fighting for answers!

Claire

Yay! Sorry about the excessive questionable word usage, but it was kind of the point to make it funny. Glad it hasn't offended anyone (hopefully). I put disclaimers in it that not all doctors are like that, and tried to make the nurse the hero - because in my case they usually are!

my "other" vote was NONE. Still looking.....

So sorry, Claire; we all understand...wish you felt better. This warm weather is making it hard for me to breathe, as well...my blood is so thick, sometimes I wonder how I get any to my brain at all...lol. I used to wonder why it was so thick...at least I know the answer to that, and why I have trouble breathing and am exhausted all the time...Loved your video...especially because I am a retired RN. Definitely open your windows!! It is beautiful outside here in Alabama. I wish I was closer to the beach!! Love the sea air...My mom lives in Panama City, but that is 7 hours away!! I'm almost in Tennessee

Thanks for the encouragement What did you find out about your bloo dbeing thick if you don't mind me asking? I have always wondered!

And Rama, thank you. We all react so differently. I can push through and deal with most things, but I have massive medicine anxiety, I have reacted so badly in the past to so many meds! Do you know what the half life is - or how long till it wears off if I react funny?

MomtoGuiliano - thank you, and I agree. I'm taking Klonopin, so the pediatrician wanted me to wean slowly just in case she is getting any via my milk. My plan is to be weaned by next month. She is already not sleeping as well, hope I havent been sedating her with my milk! But we bring this up every time at the ped and they feel its no issue, as she has WAY surpassed all the milestones for her age (thank you God).

Naomi - yes, I did make it, and thanks I'd like to make more, it was really fun putting together. I llike to do silly POTS stuff!

Thanks for posting this Issie - because I am involved in different groups, and hear silly cirticism of this forum regarding the censorship. I like that this is a safe place, with no one swearing or spouting out all kinds of negative doctor craziness (even thought I need to sometimes, but do it on my own time), and it is safe for to get help here. I send everyone who needs support to Dinet, links are all over my blogs. The POTS symptoms list from here is what I printed out and brought to my Internist back in 2006, after having uncategorized OI and being told "you are anxious and probably have an adrenal problem" for 4 years, and my doctor agreed it was POTS (and UVA and EP confrmed this). I was active on here for a while then, but stopped coming on because I found it very depressing, there was a different tone back then- and I was lucky enough to start feeling better and was in "remission" until the end of 2010. Coming back on here has been the best thing, the most useful tool while trying to figure out the medical side of things, as well as getting emotional support. I love my FB group, but there are some wacky folks on there, and I really appreciate all the info and connections made on Dinet. And I met my first local POTSy here! In almost 10 years of having Dysautonomia!

Here is is, enjoy!

Here;'s the facebook support group (its open):

https://www.facebook.com/groups/399414810085008/

Marti, I agree - thats what all my docs have said, that you need at least thigh highs, and more effectively waist high, because blood will pool above the hose sround your knee.

With that said, I hate the things! Have no clue what to do durring summer as I hope to be un-housebound by then!

I just was quickly approved for SSD (the one you pay into). I am 33 with 2 kids and a working husband, but it was based on my work history and points, and it is over $900, and has no mention of kids. Also - you won't receive payments until you have been "disabled" and out of work for 6 months, and mine is good for 3 years until I face a review. It is also taxed as income. You also need doctors and SSD to detrmine if you will be disabled for at least 12 months. You do not need to go to a local office, I did everything online and via mail, as I am homebound.

Hope that helps.

Rama, you can email POTSGrrl through her blog, she can connect you, and she has both. I can connect you via facebook if you are on there, I know a few folks besides her as well.

And no, she is not on Dinet Potluck, I have tried

She and I work together on awareness stuff, she's very knowlegable.

Thanks all, glad you enjoyed it - I may post it in the Chit Chat forum

And Rama- Mestinon is on my list, but I've heard the muscle spasms are wacky. I'm going to Dr Chemali from Cleveland Clinic (he just moved here!) next week - who knows what testing and following timing will be, but maybe he'll have new thoughts. I called my Neuroendo that has been doing the autonomic testing in tears yesterday because my lungs hurt so bad, and I just feel sick after talking for 10 minutes on the phone and have to sleep. Not sure what to do, the last month my lungs have been killing me and I cant tolerate a 30 minute visit from someone, or extended talking, i completely crash.

I keep babbling, sorry. Its just been tough. I'm weaning my baby from nursing so I can have more med options. My parents move here the beginning of May, and we move away from this hospital apartment we are in (I listen to ambulances all night and have a view from the balcony of the parking garage and giant hospital sign), so that will be good for me mentally - I'll have my back yard back! I will crawl out there and roll in the dirt if I have too, miss my garden.

Anyways, thanks for the support and suggestions, as always!

Claire