Maxine

Only when I go to the doctor----lol. On a serious note, it's normal at times, but sometimes it even gets high, and I usually feel worse when it's high. I think this is when I'm having an ANS crash-----------not necessarily a long term crash, but it's usually when I have pushed my body too far, or after some kind of medical procedure that has stressed my body. I think it's my BP over shooting to compensate for the stress, but my tired body isn't able to handle it very well-------this making me feel worse then I do when it's real low. When I went ot one appt. to check my cardiac loop recorder that has since been removed, I had a very nice Male RN that I love. So, I was in a much more relaxed state, and this enabled me to have my usual BP response without the "nurse ratchet", or white coat response..........it was 80/70-----only 10 points pulse pressure. I took 10 copies of this, and show it to any new physician. Maxine :0)

I refused the Isoproterenol........now way was I going to let them give that to me, as I was already a mess. I was too weak for my heart to go into that kind of craziness. The Male RN that was working with the cardiologist resident was great about it. The test came out negative, but Dr. Grubb diagnosed POTs due to my history. My BP fell 30 points, and heart rate went up 30 points, but it took longer because I was on my beta blockers. Now I have mornings that my heart goes crazy from rapid vasodialation-----probably like the nitro would do. I don't understand the purpose of adding the drugs if someone really has POTS they don't need it----I would think.... Maxine :0)

Keeping your sister and baby in my prayers---- Maxine :0)

I'm sorry cardiactec, I know how upsetting and hurtful it is to have people talk behind you back at work like this------or people from anywhere for that matter. It's hard enough dealing with such rare medical conditions, and adding the stress of such ignorant people is not something we need to add to our list of troubles----we have enough.... What's really shocking and hurtful is when you think the people who should understand the most fail you..... Please try to not think about these obtuse people and move on to those people who offer support, love, and compassion. Sending you a BIG HUG. Maxine :0)

My biggest fear is the C word---cancer. One day we had a support group meeting, and we were all complaining why POTS is so misunderstood, and didn't get the attention it deserves. We had a guest speaker, and stupid me said maybe we should all shave our heads bald. We all know many cancer patients go bald from chemo. Well it turned out his wife died from an aggresive form of breast cancer. I felt like an idiot. After watching my mother & brother die from cancer----especially the way my mother died, my fears have really come to light, as cancer is an ugly death. I don't know how I would ever handle chemo, I'm certain this would kill me before the cancer would. I pray I never get cancer, and the testing I will have at the Cleveland Clinic will be a very emotional and fearful time for me. I will be having the colonoscopy done there, and possibly endoscopy to visualize the larger diverticuli in small intestine. I always have discomfort in my gut, but not much pain. When I get my mid thoracic spine pain, the pain spreads around to the front like a band around me. this really messes with my head, and all the pain my mother and brother went through come to my head. This discomfort combined with the spine pain has been a nightmare that has taken my mind to very dark places. I'm also struggling with the fear of the right vertebral artery in my head exploding from overload making up for the misisng one on the left, and so far not one local doc has taken this seriously, but a couple from out of town have----enough to know the cervical instability near my cranial area caused something to happen to this artery. With EDS this can't be good, and I stated this to an orthoopedic surgeon, and he agreed----he said, "no it can't"! Meanwhile----crippling thoracic spine pain, and with this, my POTS is a lot worse. My inability to handle gravity has gotten a lot worse. My mother in law has been in the hospital, and this is the closest hospital to my house. I sit an watch the incompetence in this hospital, watching all the docs pass the buck around, and fear for the day I might have to be rushed there when my body decides to fail me. I'd be a goner----doomed! So many of us have to nearly direct our own medical care, as there's so few medical professionals who "get it". Just yesterday I couldn't stand in the shower, as I could feel the blood fall like water into my legs, so I curled in a ball on my knees on the floor of the tub. My husband is on vacation this week, and I asked him to come and help me. He grabbed the shower head, and I washed my hair on the floor of the tub. Then all day when I tried to walk any distance in this same hospital as all of us family members had to babysit the doctors there, I felt gravity pulling me down. My brain seems to be the strongest part, as I can see my body fail before me, like I'm standing outside of myself watching-----legs getting weaker, and I use all the mind power I can muster to keep standing. All of the above is rolled into one big nightmare, and I'm trying to cut one part of this nightmare little by little. I just need a break, and getting past the fear of having cancer will take off a big load. I'm so afraid, that I don't like to type the C word. Ironically, my brother's hair actually grew from his chemo. He was balding through the years, so he was very proud of his hair, and had a comb with him at the hospital when he was nearing the end of his life. Maxine :0)

I have a close friend going through this Eligiamore, and I can see how hard this is to live with. I hope that somehow you have a doctor help you manage this better so you can have a decent quality of life. I pray for my friend, and wish this would go away for you and her. Sending you lots of love, prayers, and support. Maxine :0)

I'm sorry for your loss------your mother is in a better place now. My thoughts and prayers are with you and your family. Maxine :0)

Thanks--- I appreciate your support and kind words. We have been up in the hospital almost every day with my mother in law who fractured her sacrum. It looks like the right hand doesn't know what the left hand is doing there, so we all have to babysit the idiots who keep passing the buck around. Fortunately she has a large family. Sad how dismissive docs were when she went to the ER, telling her she was fine, and she'll be driving in two days. I cancelled my trip to see a neurosurgeon, as we are too stressed, and their office didn't send the list of hotels in the area. Normally I would have been on top of it, but with my mother in law in the hospital we haven't had the time to sort things out like I'm all too familiar with. I'll be glad to get this colonoscopy over with, but very nervous and praying they don't find anything sinister. Thanks again! Maxine :0)

When I went to the NIH EDS study in April 2008, the Geneticist saw my lower GI films with double contrast and air, and she was sure I had inflammatory bowel disease. My regular GI doc said the EDS caused the multiple diverticuli in large bowel---3/4 of the bowel. All I know is I have constant bloat, and misery----not necessarily pain, and not any bleeding that I know of. To me this doesn't sound like crohns or inflammatory bowel disease. However, it can PRESENT in different ways. I never have diarrhea----but constant constipation. I'm supposed to go to the Cleveland Clinic for a colonoscopy. My consult was just over a week ago with a gastroenterologist. After getting my history, and my family history, she wants to study the whole family now. I need to get all of that in order by getting consent forms signed, but my mother in law broke her transverse sacrum, and she's 82 years old------so you can imagine..... We have been taking turns babysitting the incompetant staff in the hospital. I will say the nurses have been great, so that leaves the rest of the staff in question. Getting the consent forms signed will be delayed for a couple weeks. Anyway, after I get back from Maryland to see a neurosurgeon this week for my cervical cranial instability (CCI), I see another gastroenterologist who will discuss the colonoscopy with me on May 20th. I will be seeing the anesthesiologist the same day to discuss POTS, EDS, and CCI concerns with them. It will be interesting to see what is going on in my colon. It's VERY scary, becuase my brother just passed away from colon cancer, and my mother just two years before that from an unknown cancer---it was found too late, and her whole abdominal cavity was full of it. Her brother died two weeks after she died. He had colon cancer. Her sister had brain cancer, and died in 2003. The Cleveland Clinic wants the whole medical history of my mother's side of the family, as far back as we can go. For some reason or another the colonoscopy has been put off, and then a lower GI was decided due to my health instability. I haven't been stable for quite a while, then when I did feel stable, we had doctors who were afraid to do the colonoscopy out of fear of perforation of the bowel due to the EDS, and my PCP out of fear of the low BPs. I got tired of living in fear of not knowing for sure if I have polyps, as the lower GI results said some small ones were possible, but it was never followed up on, so I called the Cleveland Clinic. I'm still not stable, but want to get this done. I will stay on campus the night before, and get it done in the morning. This is a scary time, and my mind is going in dark places. This past week I almost had a breakdown, as the local GI docs's office said they saw a slightly elevated number on one of my blood tests for liver. My liver showed some lesions, and my GI doc did the AFP blood test for liver cancer. I didn't know which test she meant was elevated. Watching my brother die after the colon cancer spread to his liver really shook me up. He lost his mind after the toxins went to his brain---he was so weak he couldn't squeeze my hand. Then the way my mother died went through my head, as she was so neglected, and we found out she had terminal cancer only 48 hours before she died. My mind was going crazy. They GI doc's office called back the same day, and said the results were normal. I was relieved, but I still want to see it for myself. I just want this nighmare to end, and NO C-word. Maxine :0)

Lots of prayers for your sister and the baby through this emotional week, and for the rest of her pregnancy. Maxine :0)

Yes-----depending where the MS lesions are in the brain and spinal cord, it can affect the Autonomic Nervous System. There's also people with EDS who's myelin sheath has been damaged----sometimes resulting in MS. I had a friend with MS who could no longer sit up, and had to be in a reclining wheel chair. This was in the last stages of her MS. She passed away in Oct. 2002 in a nursing home after developing sepsis from lack of proper care of her foley catheter. She was another victim of dismissive doctors. Maxine :0)

I didn't read all the posts, but read your initial first post, and I know for sure backed up gas can make you feel terrible----and also cause the chest pain. Sometimes it feels like my chest has dropped into my gut-----my bowels give me significant problems, and they shift around a lot on occasion giving me this very uneasy feeling. Caffeine bothers me to-----I wished it didn't. One the one hand it perks me up from brain fog, and gives me energy, but it causes palpitations. Why do our bodies have to be so dang sensitive. This isn't fair. I hope you're feeling better. Big Hug.. Maxine :0)

Thanks Noreen. MY theory is my ribs are pusing into my thoracic spine for the firmness of the bed. We just decided to buy a cheaper restonic bed for now, and use the remaining credit to buy a couch.... I hope my thoracic spine pain improves with the different mattress. Tuesday I see the GI doc at the CC. Monday I see regular GI doc. I'm keepin the appt. to aske his opinion on the liver lesions, and also on the rest. He definately won't do a colonoscopy with my issues. The Cleveland Clinc will, but they still wanted the EDS records especially... Thanks for the information on BEDS. We'll be doing a lot of research on beds, and that will help. Maxine :0)

Thank you Lieze and Arizona girl------ I'm nervous about all of this, and also because I've been in a POTS crash of sorts, so any testing will be difficult. I'm hoping they will take my other health issues seriously, and will do testing with caution. Arizona girl----unfortunately 3/4 of my colon is diverticuli. I guess it depends how bad it is-------weather or not they would decide to remove part of the colon. Right now, all I know is there's a lot of diverticuli, and the doctor doing the EDs study thinks I may have inflammatory bowel disease----this was in April 2008. I did try to get the colonoscopy done as I said, but I got sick that winter with streap throat, and thought I had it again the day before I was supposed to have the test. I should have gone that summer before viral season hit. I waited until fall, and in early 2009 my brother took a sharp decline right after my colonoscopy was cancelled. He passed away the following month. Then my PCP got involved and said it was too dangerous for me in the state of heath I'm in. My PCP and the local gastro doc had fears of my low BPs and upper neck instability. My gastro doc said my EDS probably cause the extensive divertiucli. Maybe that is why the GI doc at the Cleveland Clinic is interested in my EDS records. She wanted them before scheduling an appointment. She didn't seem concerned about receiving other records on my spine instability, POTS, ect. I'm very concerned about breathing issues, as my breathing is difficult when I'm awake, not to mention the apnea. My geneticist thinks my apnea is central sleep apnea driven by brain stem syndrome for the instability on c1-2. The gastro doc needs to understand this, as this will affect the sedation process for colonoscopy. I don't know how much the spine and POTS issues are affecting my digestion, but clearly my EDS is doing something with my intestines. Although I'm not thrilled with that, I hope this is all that is wrong with my digestive system. I also hope the small lesions on my liver are just what the radiologists thinks they most like are-------hepatic cysts which are benign. Thanks again for your support----you are both very thoughtful---- Maxine :0)

So sorry to hear this news. It's hard when you lose a caring doctor because they are such a rare find. I don't think it's a lack of profit thing either. We could generate lots of revenue with all the testing we go through, pace makers, loop recorders, high priced prescriptions. Other problems many of us have that POTs is secondary to generate a lot of profit also-----orthopedic surgeries, neurosurgery, physical therapy, more high priced prescriptions ect. I just think the cascade of problems that can come from POTS, EDS, and related issues chase doctors away who aren't really in it for the passion for helping patients, but rather the "title" or the money. One resident doc that works at a local hospital near me said doctors don't want to work with dysautonomia because there's no money in it. Obviously he has no idea about all the cascading problems from ANS dysfunction, and can't relate on how much revenue can be generated by us. I hope you can find someone who is just as nice as this doctor you're losing. Big Hug to you. Maxine :0)

I sent all my GI films to Cleveland Clinic to get their input. I called and discussed my family history of cancer----brother (colon cancer), mother (don't know where her's started, as her whole abdominal cavity was infiltrated---we all found this out 48 hours before she died, and her brother who died two weeks after she did of colon cancer. My Aunt (mom's sister) died of brain cancer in 2003. The coordinating nurse for the GI dept. at the Cleveland Clinic was concerned with family history. I told her the testing for lynch syndrome came out negative, but she asked how they tested me. She seemed skeptical, like maybe the testing wasn't done properly. I told her I have not had a colonoscopy yet, but I did have a lower GI with air and double contrast. This is what the local GI doc decided to do due to my other health complications. He ordered the testing, and I had this done in early 2008. An upper GI was scheduled to looked at the large diverticuli in duodeum---it's 5cm. The tests results of that said large diverticuli....nothing more. The tests results for the lower GI said multiple diverticuli in 3/4 of colon, only sparing the ascending colon. MY GI doc said this was a lot, and said it was probably due to the EDS. When I went to the EDS study in April 2008, I took what records I had, and she saw the film of the lower GI. She said I probably have inflammatory bowel disease, and that my fingers were clubbing. I said this was just the way my nails are shaped. She didn't agree, and said they were clubbing. I told her I never get diarrhea, but I'm constipated a lot. She said I don't necessarily need to have the diarrhea with inflammatory bowels disease. She said I should get a colonoscopy. I had a recent thoracic MRI of my spine, but it reported multiple liver lesions in right lobe--(most likely hepatic cysts). No call was received for PCP about this, and when I went to my neurology appt. at the cleveland clinic the doctor saw the thoracic spine MRI and asked if I was having digestive problems. I said no more then my usual---I suppose I do get full really easily. I've had bloat and discomfort for many years, but never intense pain in any area of my abdomen. I just have trouble digesting bulk foods like wheat breads, oatmeal, certain berries, and definately can't have corn. However, I need my fiber, so can't avoid the wheat breads. Once she got my records and reviewed them with the GI docs, she asked me how they knew it was only diverticuli in my colon. She asked some other question, and then said it's better to talk with the GI doc, and made an appoointment. She said it would be better then trying to communicate over the phone. She seemed to avoid talking about the films I sent to her. THIS IS SCARING THE YOU KNOW WHAT OUT OF ME! I've had a liver cyst for years, is this the same thing? Or is something alse going on? As you know I haven't been taken seriously about any of my spine issues from the CC. Not that they're bad docs in neurosurgery, they just don't understand the corelation between EDS and spine instability. As you can see by my signature line I have instability at the C 1-2 joints (cervical cranial instability) CCI. I recently had this confirmed again by orthopedic surgeon. If NIH didn't confirm is also, I wouldn't continue to find a NSG to help me. I need the documentation of the CCI so I can be handled carefully during any kind of invasive testing. They also need to know about my POTS/ANS dysfunction The GI coordinating nurse asked for records on the EDS, and both my EDs doc's office and NIH said they would fax the records. I will be going on Tuesday, and I scared, scared, scared. What does this doctor see, that can't be discussed on the phone? My mid back hurts so bad----it's it really something in my guts spreading to my mid back? This back pain really messes with my head. We have a new tempurpedic bed, and I can't even handle this BED. We have to return it. Today is the deadline. I tried it for 90 days, and it's not working out-----it's too hard, and it pushing my ribs into my thoracic spine, and causing my neck to subluxate more. We even pought a tempur-pedic pillow------not working out. I just want to be cleared of cancer.............I have trouble even typing the word. On Tuesday I saw Gran Torino which was the last movie my brother Joe saw before he died. He died less then 5 days after that. I couldn't control my crying after the movie....I went into the bathroom and layed on the floor face down just losing control...... The character in the movie reminded me of my brother in some ways, and it just shook me up so badly. There have been so many obsticles in the way of getting the colonoscopy, and this is why the lower GI was done. they didn't seemed concerned with the results other then the diverticuli, and they didn't even seemed concerned with that. I even went to the surgeon to discuss having a colonoscopy, and she said my lower GI was OK, and asked why. I told her about the NIH doc, and how she thought I should have one becuase she suspected inflammatory bowel disease. She agreed to order one, and she even set up an anesthesiologist and an operating room to watch me more closely. I had the pre testing, and was ready to go. Then I got a sore throat---this was early 2009. I had streap throat in Dec. I thought it was back. I callled the office to let them know I had a sore throat, and my colonoscopy was scheduled for the next day. They had to cancel it. Meanwhile, my brother got much sicker, and he passed away the following month. A couple months after this I went to my PCP and said I need to get the colonoscopy done, and he thought I should have a virtual colonoscopy becuase he saw my BP drop quickly, and has seen my decline with the spine instability and POTs issues. He said I wasn't stable enough. Then when the prep was double of what the prep is for regular colonoscopy, he said I had to do it in a hospital. I told him they dobn't have a virtual one in a hospital. I went back to the surgeon, she said let's wait, there's a new type of fecal testing that detects bleeding from polyps. She said a lower GI should be done every three years, and so did my brother's oncologist. This test doesn't see small polyps. It's approaching three years. I just want the colonoscopy, but don't want it here, as they seem a little afraid of my complications. My local GI doc won't do it at all. I'm in so much pain in my mid back, and of course my neck, but the mid back pain is so intense that I have become limited more, and pretty much house bound. Please pray that the C word isn't found. Maxine :0)

Thanks EM------it is an interesting site. I posted into my favorites. Maxine :0)

Here's a link I found while debating on weather or not to eat the stir fry I made with la choy teriyaki sauce. The label doesn't have MSG written on it, but it does say hydrolyzed soy protein. http://www.soyinfo.com/soydefs.shtml http://www.truthinlabeling.org/hiddensources.html There's something intersting-------I notice when I eat hot foods with these ingredients I react more. Tachycardia, shaky, excessive bloat....... I sauteed the vegetables in smart balance and added lachoy teriyaki sauce. It tastes really good, but I could feel a reaction creeping up on me, so I just picked at a few vegetables--(of course they're soaked in the sauce). I must say, I did a good job making the sauce with teriyaki, water & flour. Too bad----I just don't want to deal with feeling crummy, so mostly white rice and a can of v-8 for me tonight. My hubby loves it, so nothing is going to waste. Maxine :0)

You're definately in my thoughts and prayers. Wow, you have a lot going on! I wish we had a "HOUSE" type doctor around. BIG HUG, Maxine :0)

HUGS to you Angelica...............I hope this passes for you quickly. Viral infection do make a mess of us, and I'm praying that your body calms. I really feel for you, and wish you didn't have to deal with this. Maxine :0)

Good luck to you Nina. I'm sorry you're having some set backs with this, I know heartburn is a constant misery. My husband deals with it, and he's stuck on nexium. I think yours is considerably worse, and I hope they find a way to get this under better control for you. Good luck on the testing-----I hope it proves useful for you. Maxine :0)

Lots of prayers to you, and more prayers for a speedy recovery. BIG HUG to you. Maxine :0)

Sending prayers to your therapist, and you for strength to get though this very difficult time. I'm so sorry. Big Hug to you. Maxine :0)

Noreen--------------------thanks for your support and understanding, it's appreciated more then you know. I felt totally raped-----raped of my emotional well being, my spirit, and my dignity. I'm not normally a bitter person, but this left me feeling very bitter---and ANGRY. I did not receive a lot of support at the time of the incident, but two or three people did write a supportive PM to me. I even wrote a letter to the president of that university. His letter back seemed more sincere, but in the end I'm sure he probably doesn't care any more then the head nurse did. The story is a little more complicated, and I can't really get into that here. At some point I plan on a surprise visit to the president. I have no problem going face to face with anyone who needs to know about problems like this. Fortunately I have have been blessed with two very good therapists, and both have validated my "physical" illness and symptoms. I see one of them off and on as I need to. The other one isn't covered under my insurance like they used to be, and the co-pay is bigger. I was lucky they were both very good, and I was still able to have therapy when needed. One thing to think about-------------------- Things aren't always what they appear to be. Negative words you hear from other people, no matter who they are, may have no validity behind them at all. Keep this in mind-----just because someone has a "title", it doesn't mean they know what their talking about. Maxine :0)

Here you go Reen; http://www.grc.nia.nih.gov/studies/ctd.htm http://www.grc.nia.nih.gov/branches/lci/nmcdonnell.htm I have the knee marbles too.....I still have them... A geneticist who specializes in EDS is best-----in my opinion anyway. They seem to know more about the co-existing secondary problems related to EDS also. I see Dr. Brad Tinkle in Cincinnati. http://www.cincinnatichildrens.org/svc/fin...brad-tinkle.htm Going to bed now---- Take care, Maxine :0)