Maxine

Ernie---sorry I haven't responded sooner---as i'm not on here as much as I used to be. Anyway ------I just wanted to tell you how sorry I am that you were treated so poorly-------------it's just not human. I have heard of a couple people in the states being kicked to the curb from the ER in pretty bad shape---with very low BP---tachycardia----not able to eat---severe weight loss ect. I just think it's the disorder-----they don't understand how severe this can get------they are ignorant----and sometimes very heartless. In Your case however, I just can't believe, that after fainting and paralysis-----and out you go----and yet on a bumpy ride home. I have sort of lost my gumption lately fighting all this ignorance----there are times I feel rather hopeless. But not to worry--------I'm just conserving energy----------there will be a time and a place....... I just have to gather my thoughts----- and build a new strategy. Your my inspiration Ernie-------your a brave person, and I hope that this doesn't happen to you again. Big hug to you--- Maxine :0) I'm scratching my head-----I just can't figure out the mentality of some of these medical folks------------------

I'm glad for you Lauren-----It will be nice to get a handle on those disabling symptoms you have been having. Nothing better then a nice compassionate physician to lighten the terrible load we carry with all these weird symptoms that so few people or medical professionals understand. I know how it is to have a diagnosis that other "traditional Docs" don't understand---and will not understand. It's nice to see those brave Doctors who have the guts to look outside the box---looking deeper to improve the quality of life for those who suffer from lyme---and other disorders/diseases that other docs aren't willing to investigate. Good luck with your treatments----------- Maxine :0)

Yes---I saw that---saw a little last night also........ were just below you in Toledo, Ohio---we usually get the same thing as Mich---depending where you are in Mich....... I saw a few snow flakes while watching the Tigers on TV last night---------they won too---I hope they win the world series! Here's to very little snow this year kids...... Maxine :0)

Sometimes the medications we are on can make us gain weight also. Of course the lack of exercise plays a good role----and it seems like no one understands the scope of this---how terribly difficult it is for us to exercise. I used to dance---walk 5 miles---stair stepper---ect........ Now I can barely walk across a large department store..................... I take two medications that can cause weight gain. One is the beta blocker which I started in 1990. In 1990 I didn't really have bothersome symptoms other then tachycardia----so I was pretty active until my crash---and diagnosis of POTS in 2000-2001. I did gain about 10-15 pounds in the early 90s---but I only weighed about 120 pounds back then---so I could afford the weight gain. I carry my weight well, and at 135 to 140 pds. I was still pretty thin. I'm only 5ft. 4in---but a med to large frame. Now I'm a size 12----not a terrible size at all, but i'm not used to it. When I started on the Wellbutrin I gained an extra 20 pounds. When I crashed I went back down to 120---then went back to my 140 pds---but to my surprise I gained more-------- My ANS doc said wellbutrin will make me lose weight----NOT TRUE FOLKS......... At this time I have no exercise tolerance, but try to take care of my home, and take small walks if I can. However--I took a big nose dive this summer---and my small walks are few and far between. Now I just watch everything I put into my mouth, and avoid sugar----this has helped shave off a few pounds. I had a medical professional---(if you can call it that)----- put down that I'm OBESE in my medical file on several of the clinical notes. What does this say for someone that's a size 14-16----MORBIDLY OBESE?-----HMMMMMMMM---I think not. It's not enough that we don't get taken seriously---and are constantly dismissed by physicians----but If we gain a little weight and we go to our appointment for troubling symptoms ----they can blame it on OBESITY! I noticed I was treated differently by the same physicians who treated me for my illness when I was thin---after I became "obese". More or less like I'm not really as bad off as I say I am----how could I be-----after all my appetite if good---I must be eating a pound of bacon a day...... the fact is that I eat the same---if not less------but they won't believe it. Now this does not apply to all Docs---or medical professionals-------just the ignorant and shallow ones. Maxine :0)

Thanks for the replies! I have to go buy a router---then I can call my brother to hook things up for me. I'm so excited----sitting here on the computer is so hard............... I just never knew how bad this was for my neck and spine problems. It's bad....... Anyway-----soon I'll be posting from a laying position----resting my neck........ Maxine :0)

My husband bought a new lap top for me on our 18th anniversary this year---Oct. 8th! I really needed this--------posting has been really rough lately. Holding my arms up to type has been really hard on my neck and shoulders. It was so thoughtful of him to do this----he knows the struggles I have had for a long time dealing with all of this spine instability, pain---and now the EDS which is really adding more problems to the mix. Now all we have to do is get it hooked up----hopefully soon---- We need to buy the wireless thing---and my brother James will do the rest....... I'm so happy I can lie down and post. I love to research also---which is very time consuming, and I just can't do that anymore sitting up that long. I'm so excited-------a little bright light in the tunnel of darkness I've been in lately------- Maxine :0)

Willows, I must say I enjoy reading your postings. I decided to read this thread---and I think I comprehended most of it... I hope they don't have to do another surgery on your husband's foot---the one that is having trouble. I'm sorry I haven't responded sooner-------train wreck with the neck lately---having trouble being on the computer---holding arms up to type ect. My husband got me a new lap top computer for our anniversary---(18 years)--------second marriage............. Now all I have to do is get my brother James over here to hook it up and get it going. He's a real computer wizard-------he gets a big kick out of me when I tell him I think it's all magic............. My husband realizes how difficult it is for me to sit at the computer---it was so thoughtful for him to think of such a thing.......... I may not post that much---but I have been trying to keep up with some of the postings.......When I read yours I continued to follow it----what a time you two have had. Sounds like your both hanging in there.... Take care---------- Maxine :0)

Yes--Michigan Jan is right, this is true---a skin biopsy is done for this type of EDS........ I would suggest getting to an EDS expert/geneticist to have the EDS confirmed. I just received a note from my neurosurgeon that Dr. Wenstrup at Cincinnati Childrens Hospital is the past president of the medical advisory board for EDNF, the national association of EDS pts. That is who I saw on Oct. 4th--------I was told by the NSG that his confirmation of my EDS holds great weight in my case. Good luck to you---------- Maxine :0)

Jan, My heart sinks as you tell us how Jeff is doing, and how sad you are. I don't really know the right words to say---other then you both continue to be in my thoughts and prayers. I know you are so busy taking care of Jeff------try to be kind to yourself also. I'm glad you have the support of family and friends. HUGS, Maxine :0)

Here are some links to help explain what EDS is---and how it can affect you. http://www.icongrouponline.com/health/Ehle...yndrome_ph.html http://www.ednf.org/ http://www.emedicine.com/derm/topic696.htm http://www.medicinenet.com/ehlers-danlos_s...ome/article.htm And here's the site for Cincinnatti Childrens Hospital---this is where I went to get my official diagnosis of EDS. http://www.cincinnatichildrens.org/svc/alp...t=%3C%2FFONT%3E Maxine :0)

I'm so glad your appointment went well-----that Dr. Grubb was able to help you understand some of this through his detailed explanation! Dr. Grubb is a physician full of good things--one of them is that he believes us. Regarding the EDS----have you seen an EDS specialist before seeing Dr. Grubb? I just saw one a couple weeks ago who confirmed my EDS---I also have vascular involvement---but not type IV. I have what was formerly knows as type III---now known has joint/ligament hypermobile type with vascular and skin involvement/skin fragility/poor wound healing. I saw two physicians---a geneticist, a cardiologist, and two genetic counsellors. I also had a cardiac echo that was more detailed then the ones I have had in the past. In the past I didn't take all this blood pooling stuff all that seriously, and I didn't think I had it---so I never really paid attention. I always thought my spine had something to do with it---well it does, but so does the EDS, and I have definate blood pooling. It helps to see an EDS specialist also. I found the one that I saw to be very validating---and took all of my conditions very seriously. I also have problems with my cervical spine, chiari malformation, cervical/cranial instability---and so on. EDS probably does play a role in the decline in my spine.... Dr. Grubb knows quite a bit about EDS. Maxine :0)

Lots of folks with POTs have "hyper adrengic" attacks---(not necessarily meaning you have hyper adrengic pots)---------but an over active sympathetic nervous system (flight of fight response) can make one feel tons of anxiety---thus the anxiety is secondary to the POTS. This happens often in POTS patients. The sympathetic NS is part of the ANS. Generally if I just have an anxiety attack---the heart racing isn't all that intense. It's so very hard to tell, and if it's caused from the POTS---it's still hard to tell---because the anxiety can be a symptom of one of the POTS symptoms---heart racing alone will make a person anxious. That is why this stuff is so hard to figure out----the old ---"did the chicken or the egg come first" thing. Doctors should look at "anxiety" as tool to look deeper-------that is if they're wise------ and smart enough. You just don't see a lot of that-----being "smart" doesn't' necessarily mean--(MD)----as some of us have had the misfortune to find out. Maxine :0)

Thanks Emily.... I do feel some relief in that some of the puzzle pieces are coming together---I just wish there wasn't so much going on at once. It looks like I may have one of those double sided puzzles to be solved---- . Your support means a lot........ Maxine :0)

Steph, Thanks for advocating for us! There's no bones about it--------you get down there and do the work...... You have truly done a great service for all of us-------I don't know what to say------you give me hope. I have met so many people through the last 5 years--and I'm not liking the stories I continue to hear about the never ending ignorance----even in places where you would think the ignorance would never exist------as I had to misfortune to find out. Thanks again............. Maxine

WOW---another Year------Happy Birthday Emily! Maxine :0)

Thanks for the replies and support-------- I really feel confused-------and scared about my quality of life going down the tubes. I'm trying to hang on---------although it's been hard due to a terrible experience this summer ---on top of what I'm already dealing with. You would think at some point I would stop being shocked------but getting stalked on an internet forum----and by a medical professional-------or perhaps a "medical professional wannabe" to maliciously discredit me in regards of my SSDI claim. If they only had a clue of the seriousness of all this. Believe me---you don't want to know the rest............ I never intended for this to happen--------the physical limitations are hard enough to face, and to accept the reality of it all. I don't like feeling like I'm going to fall down---the dizzyness, the feeling of walking through waist high water or sand, or the problems I having sitting up---or holding my head up-------nor do I like the rest of the crap I deal with every day. Filing for disability was a very difficult decision---and very sad..... I can't imagine what is in the mind of someone who would do something like that to someone. It felt like the bottom fell out for me........ I hope and pray none of you ever get stalked like that......... Take care, Maxine...........

I'll never forget the brave priest who went in the tower to comfort the brave souls who were trying to rescue more people. I really broke down when I saw the fire fighters carry his body out when he passed away---as the other tower collapsed. There wasn't a mark on him---he just looked like he was in a peaceful sleep. I was feeling sorry for myself that day laying on the couch----feeling really crummy. I woke up at 10:00am after being up very early with my husband before he went to work. I thought it was odd that Bryant Gumbal was still on-----and I saw, what appeared to me, to be a small plane crash into a building. Then I realized they were playing back this footage---then they showed the other plane crash into the other tower---I started putting it all together---this is more then a small plane accident. Then my Mom called and said my brother James is in the Air----He was nearing the end of his 20 years with the air force---and was supposed to be on his way to the middle east---Egypt. We were frantic because one of the hijacked jets was still in the air. Two minutes later, my mom called again and said James is OK, and the jet he was on was diverted to Deleware------and all the Air force crew had to drive back to thier bases---my brother was in Tampa at the time. He did end up going to Egypt---and we were worried something may happen to him before he retired in 2002. Then when I heard about the Pentagon, and the other plane crash---I just sat there and shook. I called my husbands mother, and when she told me one of the buildings collapsed---I thought that couldn't be...... then the other one went down..... I still struggle to believe this........ My heart felt prayers goes out to all those brave firefighters, policemen----and the victims and their families. Maxine-------------------

I'm so sorry to hear this sad news. Give yourself a lot of time to heal. My thoughts and prayers go out to you and your family. Maxine

I hope everything turns out well for you--------I'll be thinking of you...and sending you my prayers. I'm surprised that Doc didn't realize you can't have an MRI with a pace maker----pretty scary, as I think even we know better then that. Yes, I heard that too------pineal cysts in some of us. I don't think I have anything like that---it's never been spotted, but some white lesions have been spotted---might be something to do with POTS also, but I'll have this looked into by a neurologist--just in case. I'm glad you will be seeing another Doc to find out what it is. i'm sorry your haivng such painful headaches---that's the PITS-----can't do much of anything when you feel like that.... Hang in there, Maxine

Hi, I'm back form the EDS specialist. I have been out of commission for a while---so posting has been a bit limited. I went to an EDS specialist at the Cincinnati Childrens Hospital. I saw a geneticist--(Dr. Wenstrup), a cardiologist---(Dr. Meyer), and two genetic counselors---Erin, and I can't remember the other name, but both were really professional and compassionate. Dr. Wenstrup was very focused, and to the point---and respectful. Dr. Meyer was very soft spoken, and very compassionate and caring---very validating about my personal health issues, and all the pain it has caused in my life. When Dr. Wenstrup first walk into the room he asked me---"why are you here"---then all the blood drained out of my face. It turned out that this must be the way he starts out---because the rest of the visit with him was great. He was very focused, examined me, and asked several questions. We went over some of my medical history, and when the cervical/cranial instability, and other spinal instability was mentioned he got real serious, especially when I told him that a NSG told me I need to have a cervical/cranial fusion. He told me I should have this done. I was very surprised, as this is something that is usually dismissed by other physicians and NSGs. I told him I'm afraid to have the surgery, and he said "I'm not going to tell you not to have the surgery". We discussed how important it is to exercise---LOW IMPACT ONLY. I'll need to tone my muscles to prevent further problems. However, after the spine instability was discussed, he said no physical activity until the spine instability is corrected. He said I just need to do what needs to be done. I am diagnosed officially with what was formally EDS type III, and now known as hyper-mobile EDS with fragility of skin and vascular involvement. I also have samll fatty type tumors on my lower legs, and arms----which is part of the EDS. He said there is no cure---and that it will get worse with age. It's genetic, and it was passed on to me by one of my parents. I told him that they didn't show signs of it, and he said one of them could have a very mild case without any complications, and that I got a more severe form of it. Dr. Meyer the cardiologist was very soft spoken, and compassionate, and explained a lot to me how idiopathic this can be-----the POTS---EDS ect. He told me the pressure on my brain stem from the retroflexed odontoid bone--C-2, the chiari--(Small posterior fossa), and the instability can cause issues with my heart as well. He was very understaning of my confusion with all this, and explained to me that this is very confusing---and that i'm not alone in this. The genetic counselors, and the nurse where very nice---and also very understanding about the ignorance I face continually from certain medical professionals. I really needed this visit to go well, and I'm glad it did. I'm not happy about having to deal with the reality of EDS along with my other problems, but it's nice to be taken seriously. The pain has been severe lately, and spreading to my middle back. My POTS symptoms have also been affected, and not much of activity out of me----just completely wiped out. Just picking out a half gallon of milk out of my refrigerator was crazy---I could feel tiny subluxations from my wrist, shoulder, and my neck/cranium area. Sounds dramatic---but it's real-----more real that I'd like it to be------------ The combo of all this, and the myelopathy has made it difficult to sit up, hold my head up---or walk long distances. Not a lot of fun these days----but still glad I can bathe and dress myself---and function around the house a little. Social life is the pits----getting out is hard on me---can't plan anything lately. Maxine :0)

Nina, I don't know how you do it?-----------------------------With everything you have wrong physically, and still working---are you still in school? Human bites can be a big deal for someone without POTS----hope everything turns out OK. I'm glad you have a good internist---sounds like she knows what she's doing-----great to hear the positive news. Maxine

Just sending good wishes for Linda to get the help she needs. It surprises me how they can just schedule a colonoscopy--endoscopy for someone in her condition with such low BP---and not think twice about her aftercare when she is there alone. My surgeon insisted I be admitted if I have the regular colonoscopy----because of low BP readings in her office. She opted for a virtual colonoscopy--CT scan first---no sedation required. It sounds like the Doc wasn't very sensitive to Linda's situation---- It's especially upsetting since she is going there hoping for answers that no one else can seem to find. I really hope it gets better for her---I'll be praying for her.... I think Poorbear has some good advice there......... Maxine

Hey Dizz, I'm sorry your having to deal with more problems. I hope TCI can help you with some of this. Keep plugging along----you'll figure out a way to get there-------- I'm praying for you all the time.............. Hang on----the ride gets smoother... HUGS, Maxine

Notherndarlene, I know the feeling of the memory issues-----mine has been terrible, so don't worry about repeating yourself---I think everyone understands---- I don't usually get a burning feeling, but I do get this buzzing/vibrating sensation when I'm over doing it. My torso----legs/arms---hips-----they just feel like electrical surges are going through them. It used to scare the heck out of me, but knowing all the issues I have it's not as scary, but still unsettling. I'm still trying to get some answers on this myself. Just wanted to let you know your not alone. Peripheral neuropathy is possible. Check it out when you go to the neurologist at MUO---------- Take Care, Maxine :0)

Thanks for the information on the chewable vitamins--------- I definately don't need the artificial sweeteners----they mess me up...... I will check out the health food stores for the chewable multi-vitamin. I do have B-12 sublingual and folic acid, but i'm in serious need of vitamin D------my levels are only -7. My endocrinologist gave me a monthly pill with a very high dose. I don't feel comfortable with that. I would rather take it daily----just a natural form---binded with natural ingredients. I can't begin to tell you how sensitive my body is to drugs, and over the counter products---even vitamins........... I always watch to make sure they don't contain any kind of stimulant----ginsing---ect..... Saying all natural doesn't necessarily mean us potsly folks can handle it---we need to watch for anything that may have a stimulation effect---or certain kinds of magnesium. I do need the magnesium, but the kind in milk of magnesia does make me more potsy, but sometimes I have no choice but to take it-----my bowels are slow------------ Thanks for your responses-------------------you were all very helpful----------- Maxine :0)