Maxine

How awful. I know the wheel chair was actually a good thing making your trip to Disney World possible, but it makes me feel sad too that you were treated like that. I usually chalk up those kind of people as not very intelligent, and their thought process doesn't go very deep. I totally understand why you want to push as far as you can------I do he same thing. We went to the lights before Christmas at the Zoo the day before Thanksgiving, and I was giving out before we made it over the entrance bridge. My son and his wife walked ahead of us with our granddaughters, and I couldn't see the looks on their face when they saw the pretty lights. I really felt like I was in heart failure, then my face went numb. Both my POTS and spine issues were in full swing. My adrenaline started to go crazy, but in a way this helped me stay up and walking. However, it wasn't fun---I was miserable. I was happy I made it through, but I paid for it dearly. The Zoo is much, much smaller then Disney World-------------it's a good thing you got the wheel chair. I wouldn't have made it. It's going to be hard that first time I have to use one. People already give me dirty looks for parking in handicap spots because I get out of the car with my motor running just fine, then about 20 minutes after it starts to shut down. It's like a switch just goes off. Sometimes I get the pleasant surprise of my motor running a little longer. I'm glad I have the handicap pass, and use it when I need it----especially hot days, or real cold days. My body can't adjust to temperature extremes. It makes a difference between me getting out or not.....the automatic car starter helps too... Some people are just ignorant. Maxine :0)

Erika, I sooooo understand. I turn into more then a crab---------------- -----------not cool. My husband tells me to get into one of those carts. He wanted me to use a wheel chair at the Zoo because I didn't make it very far before I felt like turning around. I made it! My face went numb, and my adrenaline was going crazy, but I suppose it was doing it's job. Sadly, I didn't have nearly as much fun as everyone else. MY son, his wife, and her father, along with my granddaughters walked ahead of us. I just wanted to see my new granddaughter's face when she saw the lights before Christmas. We went to the Art Museum two days after that. It was rough, and I have a lot of abdominal pooling when I push too far, so when we went to eat out I wasn't able to eat much at all. When I was talking with my EDS doctor on Monday, I just told him if I don't push like this, I will end up bed bound. I always push-----even on bad days (even if it's just sitting and folding some laundry). The only time I don't is when I have a virus---like right now................. I'm not good for much of anything like this. He agreed it's probably best to move about whenever I can. What stuns me sometimes is that people can be so rude, and have no clue that I feel like I'm climbing Mount Everest just walking around like they do. It's not like this always, sometimes I just feel like I'm climbing hills with weights on my feet. My husband knows that when I get scared (when my adrenaline is making my really jittery) that he souldn't take it personally. He knows that this is how I deal with the fear. I mostly keep to myself and do my thing to try to get things under control, but if there's too much stimulation around me when I'm like this, I can't take it. I'll start snapping like an alligator. I've been very fortunate with shopping on most occasions. One time I made it to one end of the mall, and struggles really badly to make it to the other. When I got to the other end I was white as a sheet, and a couple that was leaving asked if I was OK. I sat by the door and smiled at them saying I have the opposite problem that people with high BP have. I told them my BP was too low, and made it difficult for me to handle gravity. They were the nicest couple, and that's what helps me get though those tough times--------------------nice people. I'll tell you what can be paralyzing--------it's the depression one gets from dealing with rude ignorant docs, or rude ignorant people. this is what usually puts me to bed-----but only for a littlw while.....long enough for a good feel sorry for myself session. Maxine :0)

Thank you for your well wishes--- No anesthetic is used for teeth cleaning for me. I don't use it for fillings either, unless it's really deep---and even then I avoid it. I don't use epi in my local anesthetics. I use carbocaine because when I use lidocaine--(even without epi) I get a bad reaction---adverse, whatever you want to call it. All I know is that I want to climb out of my own skin when I get this way. That's why I avoid locals. I'm super paranoid right now----especially with the strong flu viruses this year. Last year I got so sick I was seeing double. With all my health problems right now I can't afford to get sick again. I'm a little paranoid of any infection getting to my heart due to having my teeth cleaned while fighting a virus. It's hard to tell sometimes if it a virus of congestion from my cervical/cranial instability, as I'll get this from time to time along with deep bone pain & joint pain, and fatigue-----beyond my usual. Maybe I should go to my PCP and have him do some blood work. I'm so wiped out lately, and my spine pain has worsened with more spasms. Maxine :0)

I caught a little virus off my granddaughter a couple days ago, but haven't had a fever. I've just felt sniffles, and also felt body aches. I didn't know what to do about getting my teeth cleaned, and thought they would make me wait a long time for the next appt. if I cancelled. I told the hygenist that I have a little virus, and she didn't seem concerned at all and went ahead with the cleaning. I don't bleed much as my hygene with my teeth is very good. I go for cleanings every four months. At one time they said I had a MVP years ago, but now say I don't. Antibiotics were stopped in the 90s as prophylactic treatment beofre dental work. With this virus my mid spine hurts like crazy, and my head feels congested in my ears, and I have some sinus drainage-----it's a weird virus. My granddaughter has a mildly congested nose, but otherwise no other symptoms. My heart rate has been running in the upper 60s and BPs have averaged 105/65---in that range. I had a low fever of 99.0, and BP spiked to 140/88. I took my temp again, and it's now 98.6. My normal runs about 97.6. Maxine :0)

Thank you Firewatcher----I love them! I'm thinking it would be pretty cool to get boots like this---BUT they would look like regular boots that would pump blood back up while you walked or stood in one place. How cool would that be...... Merry Christmas! Happy Holidays! Best wishes for a HAPPY and HEALTHY 2010! Maxine :0)

Thanks, Unfortunately, this is a risk doctors take. I know you don't want a debate, but I'm a warrior of sorts with this business. I'm in the midst of trying to hold the doctors accountable who took my mother's dignity away. We found out she had terminal cancer 48 hours before she died, and after finally getting the courage to look into her files it made me sick what I saw. Many CTs, MRIs over the last several years with possible neoplasms in lungs, lesion on liver, and possible lesion on kidney. Her last CT scan was sat on for about two weeks while they sent her to physical rehab. This was the last two weeks of her life. I remember the snow melting, and sensed her life melting away, as my father and I knew something much more serious was going on. She was in and out of the hospital during Nov, Dec. and Jan with HUGE blood clots, one traveling to her lungs. We were told of a bladder tumor in Nov., and the doctors said it didn't spread, and it wasn't very big. Hmmm, this must have been she started when she had the TIAs. She had BIG red flags of advanced cancer, yet none of her docs had a clue. THIS is not about profit------(money). We have a doctor in the family, we know frivolous law suits happen all the time to different doctors. It's these idiot docs who shouldn't have a license that cause this burden on the other physicians who actually know what their doing. I want these doctors to answer for this horrible injustice. I've seen animals treated better. My mother was forced to get dressed in her street clothes every day on the last week of her life. On the 23rd of Feb. her body started to shut down. OOPS, the urologist thought he should NOW look at the CT scan done two weeks previous. He told us a horrible mistake was made, and she had cancer in her lungs, pancreas, abdominal wall, abdominal lymph nodes, liver, and BLADDER. She had MAYBE three months to live, and he would get hospice arranged ASAP. We had a meeting with hospice on the 25---less the 48 hours later. 3 hours after that she died. Multiple doctors were involved, and I'll see to it that they all answer for it. I have all her files now, and I will have her films once my dad gives those to me. I'm not afraid to go nose to nose with any doctor, and have done so recently when one tried to tell my physical therapy was in order for me----arobics! THIS DOC will get a nice note for my EDS doctor. It's no different then customer service, other then the fact that it's our life that's at stake. With this in mind, the passion for a patient wanting the best possible service from their doctor in certainly understandable. I don't care if I ever get a dime, but those doctors who treated my mother like a piece of meat WILL have exposure of some kind or another, and so will the corporation that houses the hospitals that were involved in this awful crime. The files are huge, and I only saw the first few pieces of paper, and it's obvious how horribly inept these doctors were. It's unbelievable that they have thier medical license. I understand what your saying Thankful, but this is the wrong person to bring this up to. When someone decides to go to medical school, they are made aware that different specialties have different risks, and the malpractice rates can be very high depending on what type of medicine they specialize in. I haven't been looking for an EDS doc for years. In fact, I was lucky to find one fairly early on once I suspected the EDS. I had EDS all my life not knowing it. It's a good neurologist/neurosurgeon that I have been trying to find for years---- . I just saw my mothers files days ago, so I'm still raw, and still very angry. It will take time for the anger to dwindle. This is so beyond what anyone could imagine----watching this kind of inhumane treatment of an older defenseless dying woman. I'll never forget when they kept putting the comb in her hand trying to get her to comb her hair as if she was mentally challanged (like she didn't understand what they were telling her)----they talked down to her. Her arm would just drop to her side dropping the comb. She was too weak, as it was only days after this that she died. Oh, and lets not forget about them cutting back her pain meds.-----as you can imagine this would not be the thing to do to someone with END STAGE CANCER. When someone is dying of cancer, they need hospice for many months, compassionate care, pain control-------------and most of all, their dignity. My mother had hospice care for three hours, and it was at the third hour of enough pain control that she must have decided she wasn't taking any more chances, and took this opportunity to hold on to this little piece of dignity and gently pass away. Also, my experience with "stalker nurse" didn't help. I"ll never forget this, or will never figure out what/who was behind the whole thing. Not only do Doctors need to be held accountable, but nurses too. They all cover for eachother's behinds----------the bad ones that is......... the good know who they are, and the bad know who they are. Eventually what they do comes back to them...... I have been fighting for the medical care I deserve for a long time, and it appears that a few doctors are doing their jobs, and some go beyond the call of duty, and those are the ones I treasure. It's these docs that sometimes don't get respected by thier peers because they go against the grain. They fight for what they believe in, even if it's not conventional. Maxine :0)

My husband works for the US post office as a city carrier. He works full time-----but has overtime on and off quite a bit, so it's very hard on him because of my limitations. I used to work full time unitl 2001, and had to stop due to limitations getting worse. I tried to find part time employment in late 2003/2004, but all interviews were for fulltime for the type of work experience I have experience in. I worked for over 22 years, and for 11 years of our marriage I carried really good medical benefits. My husband's job provides good medical benefits, so thankfully we still have coverage. My husband is thinking about going back to school for his Master's degree in Finance. He has his bachelor's degree in Accounting, but the post office pays more then an entry level accountant. However, with the economy in the shape it's in, and everyone paying bills on line, the mail volume is going down. Although my husband has been with the post office almost 16 years, so hopefully he would not be laid off. Technically 18 years if you count the time he was a TE/transitional employee. HE became a regular city carrier in 1994. My husband is more of less preparing for the possibility of traditional mail delivery being stopped. Maxine :0)

I'm in NW Ohio. Thanks for your reply and support. IT is difficult to find a geneticst who specializes in EDS, so I feel blessed to have a good EDs doctor. My CCI has caused so many other problems that it's very difficult to understand how those docs at the Cleveland Clinic can't get this.......it's so obvious. I think it's about liability-------they're afraid of it. I have a friend in Calf. getting the same run around. They shouldn't be any more afraid of this then a heart surgeon doing a triple bypass. Another thing is ignorance, they just don't know enough about it-------AND they think we're nuts..... Maxine :0)

Yesterday my husband took me for the three hour drive to see my My EDS doctor/Geneticist. I was is a bad mood the whole way down there for several different reasons. One of them being missing my friend who was supposed to be going down there with me. We started to schedule our appts next to eachother since she lives near me. MY husband would give her a ride saving her the trouble of finding someone to take her there. She passed away from a ruptured aorta in August-----complications of her EDS is what I was told. Then the weather was kind of shakey, and we didn't know if we would hit an ice patch at any time. We have a 50/50 chance of snow. On the way back it was a continuous mist hitting the cold ground, and it was pretty scary. The appointment went so well, that it was worth driving in the bad weather conditions. The doctor spent a long time with us, and in fact I felt kind of bad about it. It didn't appear he had any other patients yesterday, unless I was his last one. We had a long discussion about my cervical/cranail instability, and the difficulty most EDS folks with this type of instability have trying to get neurosurgeons or orthopedic surgeon to take them seriously. The othopedic surgeon who has suggested the c1/2 fusion on me has recently started doing CT scans with head rotated to the left and right which shows a much clearer picture of any gaps and instability verses the traditional flexation/extension MRIs and x-rays. This is something we may do for me to get more of a diffinitive answer, and to validate my instability in the eyes of the doctors I have seen who are in denial of my instability. Unfortunately they seem to think I'm in denial that there is absolutely NO INSTABILITY.....hmmmmmm. Well it's kind of hard to NOT think instability is there when I'm feeling my head subluxate constantly, and can't sleep comfortably on my side without it feeling like my head is pulling away from my upper spine. He also suggested possible injections to the area--(possibly steroids) to help with the pain and swelling. This may help for an extended period, or it may not. This is painful to do, and I have no way of knowing how it will affect my POTS, so it's a big decision. He is concerned about me walking around with instability like this much longer as it's wearing me down-------we both are. We discussed the swelling near my lower right neck and clavicle, and the conclusion is it could be backed up lymphatic fluid, or vascular congestion possibly due to the right vertebral artery making up for the missing one on the left. I talked about how the MRA report from NIH said the left vertebral artery is missing on the brain MRA, but a recent ultra sound of vertebral arteries shows flow in left vertebral artery in my neck. (missing in brain, but not the neck---so what happened in between?) The MRA from another local hospital shows it missing also, confirmed from a local neurologist. He said it's possible that it's so small it can't be seen in the brain MRA. I told him my husband and I saw the MRA, and the onle on the right can clearly be seen, but there nothing on the left, and Dr. MCdonnell from NIH said it's not there either. Whatever it is, it's not normal, and my right side is trying to compensate. I need to watch out for blood pressure spikes, as this could cause a stroke risk. He said work with the neurologist that I'm seeing at the Cleveland Clinic. Based on what we can both see on the notes from the CC neurologist, he is following the lesions in my brain, and he needs to follow up on the vascular abnormalities on the back of my head and neck. We discussed the ignorance on EDS, and how the media has portrayed it as a side show, and it has diminished the seriousness of EDS. It's very sad that such a serious disorder has been sidelined like this from the media, as we need exposure, just as much as all of us do that have ANS dysfunction. Many of us have POTS/ANS dysfunction secondary to connective tissue disorders. I told him my PCP and general surgeon don't want me to have traditional colonoscopy due to the CCI (cervical cranial instability). They are concerned about sedation and me possibly needing intubation and extending my neck back causing further damage. THe general surgeon knows about a new fecal test that can detect polyps, and she's now looking into this. The double contrast barium lower GI with air didn't seem to pick them up last year, but it was hard for the radiologist to determine if it was fecal material or polyps. (sorry about TMI) The EDS is progressively damaging areas all over my body, but especially my spine. My feet, fingers, knees, and right scapula have had a lot of trouble lately. I'm glad my EDS doctor is so good with his patients. He's going to send reports to the doctors at the Cleveland Clinic, as well as Dr. Grubb. He'll also contact the orthopedic surgeon and discuss my CCI, and the CT scan with neck rotated. This doctor, along with Dr. Grubb helps me hang on to hope. Maxine :0)

KeXia, My heart breaks for you, and I can only imagine what it would be like losing my soulmate/husband/lover-------especially when life is already dealing you a bad hand. All I can say is use this as an opportunity to reach inside yourself and find your inner strength. You have it, it's in there. I've been through this before, and I was able to pick myself back up again. My parents were a big help to me while I rebuilt my life. I found strength I never knew I had. I got married again, and after 12 years of my second marriage and working full time while going to school for part of those years my health crashed. Now I'm still trying to pick up the pieces of me that are left, and pray my husband sticks through it with me-------so far 20 years. I'm fortunate to have my son from my previous marriage, and two beautiful granddaughters It looks like you have some wonderful support here. With this, and the support of your family you'll be in good hands to get you through this chapter in your life. Good things will come again. Keep good, loving, and loyal people in your life. Compassion is what you need. Toss the bad people in your life to the wind, and just let them blow away. BIG HUG to YOU........................................... Maxine :0)

Hi daisy--- I get this quite a bit----usally when I try to do too much. I'll get this when I cook, do chores, or try to stand up too long. Shopping does it to me too. My time with that is very limited in all of these. It's a vibrating sensation in a rhythmic fashion-------mmmm----mmmmm----mmmmm. Your're right, it feels like a vibrating cell phone, but on a much bigger scale. It's very uncomfortable, and when it first started it used to scare me, no I just attribute it to another weird symptom of ANS dysfunction, EDS, and spine instability----------not sure which is causing it. Maxine :0)

Alicia, It might be wise at some point to get he MRI of your Brain. I'm glad your feeling better, and hope you continue the antibiotics. With strep throat it's especially important as Strep can damage your heart if left untreated. Usually with a stroke you feel weakness on one side, have slurred speech, ect. Having that fall could have caused an injury.... http://www.americanheart.org/presenter.jhtml?identifier=4742 I had it last Christmas. I couldn't believe it, as I haven't had it sine I was 12 or 13 years old-------37 years ago. I was so sick I felt like my body was splitting, but this last time my throat wasn't as sore, so that's why I wasn't sure I had it. I thought I had a flu of some kind becuase I had a high fever. On Christmas morning when I had orange juice it felt like I was swallowing razor blades. We went to ER on Christmas as that was the only place open. I had a positive culture for strep. I hope you get the MRI. In the meantime-------------BIG HUG. Maxine :0)

Pretty cool link EM, thanks! I sent it to my son who is a vegetarian. I don't eat much meat at all, and I trying to decide if I want to cut it out alltogether. My husband eats meat. The vegetarian diet looks expensive. My son keeps up somehow, and he's made quite a few recipes that are great! They're young with two little girls----my son is the only one who is vegetarian. His wife and girls love meat. He's a very strict vegetarian. His wife and girls do like all his recipes. The only eggs he'll eat are free range eggs, and he does eat fish-----he's not vegan. My B-12, and other vitamins seem to be in the normal range except vitamin D whihc is very low. I think the only food products that mess with my POTs are foods with MSG. Maxine :0)

A geneticist is the best person to see to confirm the diagnosis. In my case no one suspected it until I pushed the matter due to being so hypermobile, loose spine joints, and scapula dislocation. I went to the CLeveland Clinic, and saw a neurosurgeon who thought I had it. However, this wasn't enough for me, I wanted to have a confirmed diagnosis from a geneticist. A NP is really not qualified to diagnose it, but they can tell you they suspect it and refer you to someone who can confirm a diagnosis. Either way, if it is suspected then they need to be ready to help you find confirmation. I'm glad your looking for a doctor in genetics to confirm a diagnosis in EDS. Good luck to you. EDS was much more serious then I ever imagined. Maxine :0)

Here's one of the other physician's who is one of the medical advisors for EDNF (ehlers danlos national foundation). He's also part of the EDS study at NIH. Mark Lavallee, M.D., F.A.C.S.M. Mark E. Lavallee, M.D., C.S.C.S., F.A.C.S.M., received both his undergraduate and medical school degrees from Pennsylvania State University. After completing a family practice residency at York Hospital in York, PA, and a sports medicine fellowship at the Crozer-Keystone Health System in Philadelphia, PA, he acquired the C.A.Q. in sports medicine and his certification as Strength and condition Specialist from the NSCA. He was recruited by the Memorial Family Practice Residency to start the South Bend Sports Medicine Fellowship, where he currently acts as its co-director. Dr. Lavallee is a fellow of the American College of Sports Medicine and has a faculty appointment as an Assistant Clinical Professor of Family Medicine at Indiana University College of Medicine. Locally, Dr. Lavallee is the team physician for area high school athletic programs, head team physician for Indiana University South Bend, medical director of the Sunburst Race (1999-Present), and is the team physician for University of Notre Dame men?s soccer team. Dr. Lavallee was lead author for the AFP Monograph Series on Fractures and Dislocations, Vol. 1 & 2 (2002). On a national and international level, Dr. Lavallee has been the medical director for the World Masters Weightlifting championships in Glascow, Scotland (1999), Orlando, Florida (2000), Kefalonia, Greece (2001), the World Masters Games in Melbourne, Australia (2002) Savannah,GA (2003), Vienna, Austria (2004), World Masters Games in Edmonton, Alberta (2005) and most recently Bordeaux, France, (2006). As a team physician and sports medicine board member for USA Weightlifting, he has covered numerous national and international events for our national Junior and Senior teams, including the 2003 World Weightlifting Championships (Vancouver,B.C.), the Olympic Team trials prior to the Sydney 2000 and 2004 Athens Olympic Summer Games, and our World Junior Women?s Team Champions in Thessaloniki, Greece (2001). Dr. Lavallee also has served as medical director for US Fencing National Championship (2000), Jr/Cadet World Championship (2000), Junior National Championships (2006 US Boxing). He is an active member of AMSSM board member and chairman of the fellowship committee. Dr. Lavallee has Ehlers-Danlos Syndrome, classical type. He joined the Ehlers Danlos National Foundation as one of its early members in 1987. He has enjoyed speaking at many of the national conferences he has attended. Dr. Lavallee served on the EDNF?s board of directors from 2000-2005, where he created the Professional Advisory Network (nee Professional Advisory Council) He currently serves on the Ehlers-Danlos National Foundation?s Professional Advisory Network and is a co-investigator with the NIH on a study looking at Ehlers-Danlos Syndrome and Marfan?s Syndrome with Nazli McDonnell, MD, PhD.

My EDS doctor is Dr. Tinkle from Cincinnati Children's Hospital. He's a geneticist who specializes in connective tissue disease/EDS. http://www.cincinnatichildrens.org/svc/fin...brad-tinkle.htm Dr. Wenstrup was the first doctor who diagnosed my EDS. AT first I was really concerned when Dr. Wenstrup came into the room and said, "why are you here"? I almost fell out of my chair, as we all know when a doc comes into the examining room saying those words, the rest of the appt. can't be good. However, after I told him a patient of his recommended him, and that the Cleveland Clinic said I was hypermobile, and another neurosurgeon also suspected it, he just went ahead and examined me and concluded I had hypermobile EDS. When Dr. Wenstrup left Cincinnati Children's hospital, Dr. Tinkle took his position. Dr. Tinkle is a very kind hearted younger man---I'm thinking he has to be younger then me-----I'm 50. In doctor years I'm figuring early 40s to be young---- When I was in the EDS connective tissue study at NIH April 2008 my EDS diagnosis was changed to Classical EDS with vascular involvement, and hypermobility. Maxine :0)

I think my Wellbutrin makes me feel that way sometimes. Sometimes it's hard for my to cry, like my emotions are somehow blunted. Maxine :0)

Thanks--- Yes he one of the best Doctors for dysautonomia, and I'm grateful for his knowledge of EDS. He's great at helping connect the dots, and also fantastic about working with my other doctors. They don't make many Docs like that anymore--- Monday I see another good one---my EDS Doctor. Maxine :0)

I feel bad for taking Dr. Grubb's time today, as he has enough on HIS plate without me in there whining. One major question I had was why vitamin D seems to aggravate my POTS so much-----I don't understand it. One thing he said was maybe try getting more sunlight, or even artificial sunlight. I can't take florinef or midodrine becuase I can't have any spikes in BP due to vascular complications with vertebral artery. I told him I'm having a very difficult time finding a good neurologist to take the spine instability seriously. I may have one at the Cleveland Clinic----only time will tell. The neurologist at the CC added me as a regular patient because of lesions found in my brain. He's more focused on that then the spine instability, and vertebral artery issues---but he's not completely dismissive on the spine instability. We came to the conclusion that the upper spine instability is probably part of the cause of my POTS along with the EDS. I told him caffiene made me feel good, but I get heart palpitations from it----usually delayed. It does make me feel better OI wise. He suggested green tea as it has less caffiene, and my sensitive body would take it in slower. MY GI appt. went well also with our family general surgeon, and because my BPs have been so unstable she also agrees I'm too unstable for a colonoscopy, regular, or virtual. The virtual requires a double prep. She said there's a new fecal test that detects polyps. Because I have so many GI problems she feels it's most likely EDS related, and there's not much we can do about it. My intestines stretch out way too much, and this has caused excessive diverticuli in large bowel, and of course the huge on in my small intestine. I really admire Dr. Grubb for being there for all of us when he is going though this very difficult time. He's a special person, and he takes the edge off of the many dissapointments from other dismissive doctors. Doctors like this give me hope. My GI doctor is also very kind and respectful. She's a great surgeon, and my brother's scar from his bowel resection was the most perfect incision I've ever seen. I know I've been bitter about some awful experiences with Docs, and also from seeing family members treated so horribly---along with a dear friend, but there's good docs out there. However, it's like looking for a needle in a haystack. I imagine the good doctors can get very stressed from so many patients who need them due to the neglect they receive from other dismissive doctors. They have to make up for those doctors. He asked me to have my EDS doctor send his clinical notes to him. Dr. Grubb and his family are in my thoughts and prayers. Maxine :0)

Thanks Kari---- momtogiuliana Possibly teenagers------some of them being thin. I really don't have 100% faith in everything that comes out of a doctor's mouth, and after seeing some of the things I have seen, or experienced myself, I'm very guarded. In my mother's case many mistakes were made by many medical professionals dropping the ball. She struggled with weight all her life, but she was never one to eat much in one sitting. She wasn't taken seriously years ago when her goiter grew, and her thyroid symptoms were out of control. Not until her eyeballs started to pop out of her head did they take a second look. She lost weight, but not enough to look "wafer thin". She had to have her thyroid removed. She's never really had a fair shake with her medical problems. Many people with POTS have GAINED weight because their hormones have changed. Some have associated chiari related conditions, pineal glad cysts, pituitary cysts, or have gained weight from their meds. Other younger pots patients have eating disorders, and their POTS symtpms improve when they eat and get to a healthier weight. However, some POTS patients can't eat because of their symptoms------------I've had this happen, and that's how I lost the 25 pounds. My friend that died was very thin also until a supid doc pumped her up on steroids, and she got murcury poisoning. She gained weight, but exercised in a pool quite a bit. She followed what her doctors told her to do. She got sicker, and her EDS was still missed. I thought EDS was a possibility because she was pretty hypermobile, and when she had abdominal surgery/bowel resection (her wound wouldn't heal), I told her to go see my geneticist. She also had spine instability. She saw the geneticist and hypermobile EDS was diagnosed. Michelle, you know her, she was at one of the local support group meetings you came to. She came with her husband. She was diagnosed with NCS at that time. One teenager was treated poorly in her town by her doctor, and wasn't given much time at her appt. She has POTS, and of course she's overweight. She seemd so sad, and wondered if her symptoms were being taken seriously. Hmmmmm, shallow docs......... I recommend poeple eat right, and exercise the best they can-----that's all you can do. I drink a lot of v-8, and avoid the wrong fats, and simple sugars. Need to work harder on chocolate---but still never eat a whole candy bar, but admit a little bit of this and that add up---- I know the calories and fat content in everything, and have always been weight conscience. My poor mother never really experienced a size 6. I did for years, and years. the only time she got smaller was when she tried a crazy liquid diet andwrecked her gallbladder. She took amphetemines on the advice of one of her doctors in the 60s and early 70s-----that nearly killed her. If he would have just tested her thyroid then. Even when you feel your POTs symptoms at your worst----nibble on some cereal----little by little. If you don't eat, the motility will get worse. Did I tell you how my sister in law was treated? How about her daughter who lost a full term baby? How about her husband who almost lost his arm from an infection? Both of these gals were overweight at the time---not so much now. Thank God my brother was taken seriously, or he may not have lasted as long as he did with his cancer. It was so sad as he suffered from cancer, and had to see his first grandchild still born because the doc wouldn't listen to his daughter. He died never being able to see a grandchild. The same sister in law almost had organ failure due to another ignorant doctor becuase her thyroid levels were next to nothing for an extended period of time before anyone caught it. She was really tiny all the years I knew her, and had sudden weight gain after the birth of her son. I could write a book on negligent care from the medical profession, and more then half of the victims would be "higher BMI". Gee, could the weight problem actually be a RESULT of a serious health condition-----rather then CAUSING the health condition. Tragically as I type this post they had a news flash on CNN about a man who sat in the ER with chest pain until he died, then two thugs robbed him of his watch while he sat in the chair DEAD. NOT......"what's up Doc", how about-----"WAKE UP DOC"! I know this is about POTS and BMI, but the whole picture needs to be looked at, and maybe, just maybe, they may even find the cause of some POTS patients. Maxine :0)

POTs is not necessarily in "tall thin woman" often............ Living in the same town Dr. Grubb works in I've met many, many folks with POTS----lots of them were of normal weight, slightly overweight, and some were more overweight. I do not use "obese"-----I think it's an UGLY word. There's a lot of stereo typing with POTS AND EDS. If I would have listened to one doc who associated EDS with "tall thin woman" I'd be in a heap of trouble now........... In fact most of the woman I met were around average height----, and quite of few short gals, and even a couple shorter guys. Maybe 20% of the woman I met were considered fairly tall, but not all that thin. Some gain quite a bit of weight back once their POTS symptoms are stabilized. My friend who died from a ruptured aorta from a complication of her EDS was only 5ft. 3in. She went a very long time without being diagnosed of her EDS---in fact she found out less then a year before she died. When I was very thin--------I mean TOO thin, my pots symptoms were worse. However, when I first crashed very badly my weight was in the normal range. Maxine :0)

Read my signature line----------------my neck---cervical/cranial instability is so bad that I'm pulling teep tendons in my neck now. My EDS doc is trying to get more knowledge out there on this, as instabilty related to EDS is much more difficult to recognize then the traditional causes such as rheumatoid arthritis, or an injury to the area. The instability caused by EDS is from unstable loose joints and ligaments, and they DO play an important role in holding that area together---------BUT apparently Doctors can get this knocked into their heads. I have a very bad neck............ Maxine :0)

Read my signature line----------------my neck---cervical/cranial instability is so bad that I'm pulling teep tendons in my neck now. My EDS doc is trying to get more knowledge out there on this, as instabilty related to EDS is much more difficult to recognize then the traditional causes such as rheumatoid arthritis, or an injury to the area. The instability caused by EDS is from unstable loose joints and ligaments, and they DO play an important role in holding that area together---------BUT apparently Doctors can get this knocked into their heads. I have a very bad neck............ Maxine :0)

I lost weight also in the beginning, but once on wellbutrin I gained weight on just a baby dose. Without the wellbutrin to treat my POTS i'm on the floor. An assistant to my POTS Doc had the nerve to put "obese" in my medical file. I was always quite thin most of my life, and at a normal weight when I crashed with my POTS in late 2000. I'm not happy about being a size 12 at 5ft. 4 1/2 in., but what can I do? I'm so limited now, and can't exercise nearly like I used to. My BMI did not qualify me as being "obese". I ended up very thin again after losing the 25 pounds. I ended up gaining back the 25 pounds, plus another 15--- . I'm absolutely petrified of my medical treatment being compromised due to judgement on my weight----because I'm no longer wafer thin. I've seen people actually end up with tragic consequences because they weren't taken seriously. One person being my mother, and another my close friend who just died in August. I'm bitter, and I DO NOT think BMI has EVERYTHING to do with state of health------and doctors need to get this-----------------LOOK AT THE FACE OF HIS PATIENT, AND LISTEN TO THEM! My mother's health concerns were blown off for years. I finally got the courage to look into one of the three envelopes of her medical records, and as far back as 2004 some of her CT and MRI results state nodules on lungs, kidney, and liver. They said neoplastic disease can't be ruled out. She found out less the 48 hours before she died she had terminal cancer. The last CT report----(the one they sat on for 2 weeks while she was put in PHYSICAL rehab the last week of her life to ger her "in shape" the last week of her life) said the cancer was in lungs, liver, pancreas, abdomen, abdominal lymph nodes, and bladder. This report was read on Feb. 23rd, and she died Feb. 25th 2007-----(50 pounds lighter I might add). However, the recent medical notes close to the time she died said , "no weight changes". Of course many references to her "obesity" were in her file. She was overweight, and struggled with weight all her life due to thyroid problems------I guess BMI charts would consider her "obese", but She never seemed all that heavy to me. She wouldn't qualify for a gastric bypass. My friend was over weight too. She was diagnosed with NCS, hypermobile EDS, fibromyalgia, and other medical problems. She went to three different ERs with chest pain, very high BP, narrow pulse pressures, mid back pain, and alway blown off! She went ahead with lumbar back surgery a couple weeks later. she had an aortic rupture after her surgery. They tried for eight hours to save her life, and used the entire blood supply of that hospital which was out of town---(not one of the crazy ERs she went to here who would have just let her bleed out). I REFUSE TO BE WEIGHED SINCE "OBESE" was put IN MY FILE. I'M BITTER............ Maxine :0)

Don't worry, I got your back. I've just recently met with a close friend who is willing to set up a salt dealing business. We want to keep our "salt" addicts supplied. I can just see the warning labels now..... Maxine :0)