Maxine

I'm glad your appt. went well! Please see a geneticist or doctor who specializes in connective tissue disorders and EDS to get the proper diagnosis of joint hypermobility. Did she recommend that you see a doctor to confirm the diagnosis? Maybe Dr. Grubb can recommend someone who can verify the joint hypermobility. Maxine :0)

Praying for you! BIG HUG Michelle Post when you are able to tell us how your doing. Maxine :0)

Ernie, Thanks for being in the research, and including your family. This will help all of us who deal with dysautonomia, especially those with genetic mutation. Your a brave person, and you have a kind heart to reach out to others the way you do. Maxine :0)

Big Hug to you Erika, This is such a difficult thing to try to communicate about. Look at my signature line------- How do you explain that? Thankfully I'm married, so my husband has seen everything step by step. Sometimes he doesn't get it completely, but he does a good job faking it. LOL I can only imagine what it's like for those of you who are finding new friends or in the dating world. This is such a difficult disorder to understand--------the medical profession doesn't even understand. Maxine :0)

Bev is a nurse practioner who sees some of Dr. Grubb's patients. Dr. Grubb is located at University of Toledo Medical Center in Toledo, Ohio-----the South end of town. He's a cardiologist/electrophysiologist, and he took a special interest in Autonomic Nervous System Disorders. http://utmc.utoledo.edu/physicianapp/physingle.jsp?ID=75 He's a kindly gentleman, and one of a handful of physicians who actually listens to his patients. He's a good guy. He has gone above and beyond the call of duty for his patients. Maxine :0)

Cat Lady-----your PCP is one opinion , and opinions will vary on this subject. Unless you experience weight gain with no change in diet, or even eat less, and still gain weight after being prescribed new medications, you can't really understand this. Beta Blockers can cause weight gain, but when I first took them I only had a weight gain of about 10 pounds, and I only weighed about 119 at the time. I'm bigger boned, although I don't really look it, unless you look at my hands lol----anything between 116 and 132 I can wear a size 6-8. Obviously at a size 12 now, this is a distant memory--- . As I said, A lot of us are significantly less active also, and this obviously adds to weight gain. I'd like to trim a few pounds off, and hoping to tolerate some low impact exercise. I really think it's different for each individual. All one can really do is try to watch, excess carbs, surgar, and fats, and exercise as your body allows. http://www.mayoclinic.com/health/beta-blockers/AN01409 http://www.weightwatchers.com/util/art/ind...3531&sc=803 http://blood-pressure.emedtv.com/inderal/i...eight-gain.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1662668/ http://www.evitamins.com/healthnotes.asp?ContentID=1472000 Wellbutrin can cause both weight gain or weight loss. It depends on what it's being used for. In my case it calmed whatever it was in my brain that made my body to be constantly overstimulated. It tricked something in my brain because it worked, and it also helps incrase my BP and helps constrict my blood vessels. Without it I'm in bed--------just non functional. I can't eat much without it. If I went off it I would lose weight. Dr. Grubb prescribed the Wellbutrin. How he figured out this drug would work for me I don't know. He's just good at figuring us out----- . With my digestive problems it's impossible for me to eat anything in excess, or eat big meals. A lot of people with POTS eat less, but end up GAINING weight. Like I said, at first I lost weight, then gained-------but not significantly. Maxine :0)

Ernie, I'm so happy for you! I've seen you when you were doing pretty bad, and I have seen you paralize. It's so nice to hear you have more of a social life, and you can enjoy a bit of dancing with your husband! Ball Room Dancing---------------How about that! It's also very cool that you have a top researcher in muscle paralysis who is interested in your case. I'm praying that your health reamins stable for you. I have seen some of the horrible times you have been through. BIG HUG Maxine :0)

Jana, Bodies change, and a lot of the medications we take can cause weight gain. It's not very easy to maintain body weight. I was real thin ALWAYS, and when I went on wellbutrin I gained 30 pounds. Now I'm @ a size 12 which is difficult to get used to. I'm only 5ft. 4 1/2 in. tall. I had a Nurse Practitioner say I was obese once-----I'm NOT obese, and "obese" is an ugly word----they need to come up with a better one then that for people who have trouble with thier weight, I don't care how big they get. I refuse to let them weigh me now. I'm 50 years old, and never had weight issues---(if you can call it that) until I was around 43, and this is when the wellbutrin was prescribed. Another thing that can cause problems with weight gain is the hormones get really wacked out when someone has dysautonomia. Some Gain weight, some lose a lot. At first I lost a lot. Right now I'm being very careful with sugar, and working on trimming down, BUT it's really hard when limited physically. I CAN NOT do any type of aerobics at all, and can't have any kind of impact. Swimming, and a few other low impact exercises are tolerated if I'm not crashing. When I trim off 10-15 pounds I'll feel more comfortable about getting into the pool, then I can work on the rest. Too many people get discriminated agaist in the Doctors office on their weight, and EVERYTHING is blamed on that. How about their health problems actually CAUSING the weight gain OR loss. It seems weight LOSS is much more accepted as being part of an illness verses weight gain. Before all this hit me I exercised regularly, and my diet has not changed other then eating LESS now. By the Way---------------BETABLOCKERS CAUSE WEIGHT GAIN ALSO........Hmmmmmmmmmmmm Don't be too hard on yourself. Just eat healthy foods, and treat yourself to a small piece of chocolate once in a while. Don't deprive yourself from something sweet, or a little bag of chips in moderation on occasion if you can tolerate it. Haven't we had enough taken away from us as it is? Thanfully I can tolerate chocolate, and I enjoy a couple bites of it almost daily------about 70 calories worth. I try to drink a 12 ounce can of v-8 daily. Drinking a lot of water helps keep weight in check too. Maybe try one of those pedels like on a bike, only you can sit them on a floor and you can lay down and pedal away. I think I could do this too. I also do legs lifts----Very carefully. Good luck to you--------------- Maxine :0)

I'll keep you in my thoughts and prayers Arizona girl. I talked with the anesthesiologist about my POTS when I had my cervical spine surgery. The neurosurgeon already knew about POTS, as quite a few of his patients have POTS. I also had those inflatable boots. Make sure your abdominal area is supported once you recover enough to go home. My aunt used a type of support after srgery to insure stitches stayed in, and to prevent wound issues. Take care------------------and BIG hug to you. Maxine :0)

Oh my goodness Suzy, You have certainly been through quite a bit lately, and I'm so sorry about your grandmother's passing. You both were close, and it also sounds like she understood you more then anyone, and that makes it especially hard when you lose someone who you had such a special bond with. I remember when I lost my grandma in 1992. She was 89 years old, and she had a hard life, but my Aunt who I was also very close with took very good care of her in her later years. A few days before she died I went to the hospital to see her, and we had a very special visit. Before her heath took a turn for the worse, she was on her way to get her hair done and her heart failed. She never did get her hair done. That day on our little visit, I got her comb out and combed her hair, and I put a pretty lace head band on her head to hold her hair in place. She looked in her little mirror and loved it. She asked me to get her earrings out of her drawer next to the bed, and she also asked for her lipstick. She looked in the mirror and had a big smile on her face. She died peacefully that following week. In fact she turned to her room mate who was a very sweet lady, and said, "I think I'm dying", and the lady told us she wasn't in pain and was in a very peaceful state. We weren't shocked, as we all knew she was in failing health, and we were grateful to have those very special last days with her. I hope your kids are feeling better, and that your symptoms ramain stable. You need your strength to get through all this. How's the lttle mommy cat feeling? BIG HUGS to you. Maxine :0)

Another problem is when folks who have slow gut motility take proton pump inhibitors (PPIs) (AKA nexium), as these block the natural gastric juices which help in the motility process. I'm wondering if you can take something else to help with the reflux you get which very well could be secondary to the slow motility. I get this on OCCASION, but I only take an antacid for it. They have found this in the elderly who take PPIs-------------the small intestinal bacterial overgrowth. I wish I could find the study. I'll look for it. I only tried a PPI once, and it wreaked havoc on my digestive system AND my ANS, so I took this as a warning not to take it again. My gastric motility is normal, but my small intestines are kind of a mess due to a very large 5 cm diverticulum. I also have excessive diverticuli in colon. My husband took nexium, but recently switched to prilosec generic brand. It's free on our plan, and the naxium was $60 for a 90 day supply, and his doc said it's the same thing. I think PPIs should not be given to people with slow gastric motility, and another class of drugs be given to keep reflux down when needed. I only get mild reflux when I'm way backed up---------but when plumbing is working----(even fair) this isn't a problem. Some docs like to sell the old "acid refux" problem to thier patients so they can get thier cut from the pharmaceutical companies. They prescribe PPIs like candy----------they are over prescribed way too much to people with other digestive issues that doctors are too lazy or ignorant to investigate--(i.e.----> gall bladder disease, slow gastric motility), and sometimes people end up worse off. Just my opinion.... I'm a little passionate about this------------- My mother ended up on PPIs, and the root cause of her digestion problems were never found. One day she ended up in ER, and they had to use a gastric tube, and everything started to go backwards because she was so full of it that she wasn't digesting anything. They found skins from a plumb she ate 2 weeks previous------------- My husband has true acid reflux, so they have worked out well for him. He doesn't have any other digestive problems other then possibly needing his gall bladder removed at some point---(runs in his family) his stomach gets more sour when his GB acts up. No doubt backed up acid needs to be taken care of, but docs need to investigate other options for people with slow gastric motility. Obviously you don't want to risk potential esophageal complications. ACID REFLUX can be secondary to other problems, and the docs should not assume this problem is primary. http://www.springerlink.com/content/p42335p25l00k36h/ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1726985/ This is from wikipedia; "Certain patients are more predisposed to the development of bacterial overgrowth because of certain risk factors. These factors can be grouped into three categories: (1) disordered motility or movement of the small bowel or anatomical changes that lead to stasis, (2) disorders in the immune system and (3) conditions that cause more bacteria from the colon to enter the small bowel.[1] Problems with motility may either be diffuse, or localized to particular areas. Diseases like scleroderma[6] and possibly celiac disease[7] cause diffuse slowing of the bowel, leading to increased bacterial concentrations. More commonly, the small bowel may have anatomical problems, such as out-pouchings known as diverticula that can cause bacteria to accumulate.[8] After surgery involving the stomach and duodenum (most commonly with Billroth II antrectomy), a blind loop may be formed, leading to stasis of flow of intestinal contents. This can cause overgrowth, and is termed blind loop syndrome.[9] Disorders of the immune system can cause bacterial overgrowth. Chronic pancreatitis, or inflammation of the pancreas can cause bacterial overgrowth through mechanisms linked to this.[10] The use of immunosuppressant medications to treat other conditions can cause this, as evidenced from animal models.[11] Other causes include inherited immunodeficiency conditions, such as combined variable immunodeficiency, IgA deficiency, and hypogammaglobulinemia.[12] Finally, abnormal connections between the bacteria-rich colon and the small bowel can increase the bacterial load in the small bowel. Patients with Crohn's disease or other diseases of the ileum may require surgery that removes the ileo-cecal valve connecting the small and large bowel; this leads to an increased reflux of bacteria into the small bowel.[13] After bariatric surgery for obesity, connections between the stomach and the ileum can be formed, which may increase bacterial load in the small bowel.[14] Proton pump inhibitor medications that decrease acid in the stomach cause bacterial overgrowth by a similar mechanism, as they prevent the anti-bacterial effects of acid in the stomach. The clinical significance of this in causing symptoms is unclear.[15][16] [edit] Diagnosis" Maxine :0)

I'm sorry BellaMia. Did the ER check for another possible cause for your spell? Did they do a CT of your head? Sounds like a rough patch your going through, and I hope things look up for you soon--- . With your BP being so high when you went in I'm surprized they didn't hold off on your florinef for a couple days, and I'm wondering why they would allow another IV with such high BP. They need to stabilize the BP first. Maybe the high BP was just from the shock of everything----the fall, ect. Take Care of yourself. Sending you a BIG HUG. Maxine :0)

You know your body best, and if you feel your job is taking what little life in you that's left, then you might have to make a decision. It's a hard one, and it took me a year just to decide to file. I worked for 22 years or so, and the last 15 of it was full time. The last three years was mgmt. and I was on salary, and working 50 hours a week. I tried working while sick, and cut my hours down to 40, but soon I was missing work, and finally I crashed so badly that I was bed ridden for a month. I tried to go back to work, but I couldn't handle it. I loved working, but it soon became so difficult that I was losing my positive attitude, and it became a drudgery to go in. This was in April 2001. My boss demoted me because I couldn't handle the demand my management position had on me. I was working in acct. receivable again and it was horrible working for my replacement who was on a super power trip. I asked my boss to lay me off, then he told me I could write my own pick slip and put whatever I wanted on it, as I've always been a good employee. It wasn't his decision to demote me, it was regional VP. At one point high levels of lead showed up in my urine, so they wanted me out of there because I always complained of the chemical fumes that came through the vents in the front office. they were afriad of a law suit------------ . My GM understood my situation. I went back to school in late 2002 after cervical spine surgery. Then after finishing in 2003 I applied for jobs, but all wanted full time. I knew I could only handle part time. Finally when it became too difficult to go to the interviews I knew it was time to file. I was having more problems with my spine on top of my POTs issues. Then I ended up getting diagnosed with EDS, and continued to have problems related to that, and more musculoskeletal problems. I filed in Sept. of 2004 and I was finally awarded my disability benefits is July 2007. My husband and I squeaked by financially-----it was hard, but we held it together. With all of us working together it worked out. If you decide to file, make sure you have good supportive doctors, and if you need an attorney-----still followup on the medical records making sure everything is making it toSSDI. Nothing got by me, so if it was missed somewhere else I was there to make sure it was received by the appropriate people in the SSDI office. Don't let anyone pressure you into working if you can't handle it. Your body will betray you more if you push to hard. I didn't want to end up fully incapacitated and have nothing left in me for my family. It's absolutely your own business-----it's a very difficult decision. Good luck to you-----------------please don't work too hard. If you decide to continue working, I hope you have a good boss who's willing to work with you, and who's also understanding on your bad days. Take Care, Maxine :0)

Sorry Dizz----------sounds miserable. I can't remember if you said you had a work up for gastric motility? If not, maybe check on that to see if that's causing some problems. I know you already had your GB out. AG, let us know when you have the surgery so I can add you to my prayers--- . MY Barium double contrast lower GI said 3/4 of my colon was covered with diverticuli in radiology report. I'm not sure why I don't have worse pain, but the bloat and constipation is part of my daily life. It's odd for me if my bowels are "regular"------and then when I "go" it's like it's all cajangled and everything is crooked------------like my bowels have too many twists and turns, and all waste takes a long detour before making it to the highway to BM-ville. I'm so sick of it. My GI surgeon called and asked if I was scheduled for the virtual colonoscopy yet. My PCP was supposed to schedule it, but now wants me to do prep in the hospital due to BP issues, and because I'm not stable at all lately. Dizz, I hope you get some relief from this pain! I know you have already had enough though the years, and your so young! Younger then my son! Oh my-----LOL........... am I old or what.......lol. Hang in there girl----I'll say a little prayer for you.............. Maxine :0)

I'm sorry, this is so heartbreaking, and it makes me sad that she can't be more functional due to her dysautonomia. It seems medical research on this is still behind, and I hope the medical profession will step it up a bit on the research to help her and a lot of the folks who's lives are so devastated by this. Amy and her family will certainly be in my thoughts and prayers for things to turn for the better. Big Hug to you Amy. Maxine :0)

Hi Bella Mia--- I downloaded my photos to photo bucket, then once it's in there I select and highlight the "image", then right click and click copy on the drop down bar. After this I go to potsplace forum and I right click again, then hit paste on the drop down bar--------------it will appear as a link when you post, but comes up as a picture once the post is submitted. It's so easy, and a lot of fun. That's the best I can explain it for someone who's not the best on computer lingo. I know enough to get myself into trouble----lol. Maxine :0)

I'm hoping I already had it in April. Like I said on here in another post, I was never so sick, and had all the symptoms of H1N1----really high fever, and I had trouble breaking it. I do not want to get the shot. I'm worried about my granddaughters-----5 years, and the other 20 months old. The 20 month-(little Mackenzie) was horribly sick with pertussis (whooping cough) when she was only 6 weeks old. It was a nightmare. Fortunately she was a strong little girl, and she recovered----however, it took about 3-4 months for full recovery. She ended up on monitors until she was 5 months old. I'm wondering if she should have the H1N1 flu shot. We live in Ohio, and Columbus Ohio is hit hard with a couple of children dying from this flu. We're at the NW tip of Ohio-----so this is too close. With Mackenzie being in day care every day it really makes me worry. Maxine :0)

I don't think your over reacting at all. You need to protect yourself because this H1N1 is really rough. I'm hoping I had it last year when I got so sick with the worst body aches, and I also had chest congestion----it was so bad I couldn't see straight, and I also had a high fever that had trouble breaking. It was really bad, and I hope it was the beginning of H1N1 because my sister in law and I had the exact symptoms of this flu virus. It was in Mid March. Protect yourself-----------------AGAIN, your not over reacting. Maxine :0)

Thank you! Gayla-----I love your kitty. How nice it is when they cuddle with us like that. Samantha does cuddle a lot. Spencer has a special routine every morning. He comes and sits on us in the morning while were still in bed. He likes to stand there on our sides or on our bellies. However, I had to train him to sit lower because he at least 18 pounds! He is solid! He carries this little baby dog with him all round the house. It's a cat toy I bought from him when he was a kitten. It's his favorite toy, and each night around the same time he walks though the kitchen with it in his mouth and a real high pitch meow, then lays it down in the same spot on the living room floor and curls his body around it-----like it's his baby---lol. Some nights if I sleep on the couch he brings it as a gift to me and lays it down beside the couch. He's got quite a personality. Here's a funny photo; We were having the rehearsal dinner the night before their wedding at the "crabclaw" restaurant in the eastern shore of Maryland. Her family loves the crab there, and the crab cakes. Then I tried to compare my son's friend to the guy on CSI Miami------LOL My son was smoking a cigar-------which I never pictured him doing because he hates smoke, and doesn't smoke cigarettes. Once a month or so he smoke a cigar with one of his buddies. Here's a funny one; He like to juggle too.....

Thankful---------sending you a BIG HUG. This does make you feel so lost sometimes. I can partially relate to how awful it must be thinking you might not be able to conceive a child. I Do have a son who is 28 years old now, but my second husband and I tried to conceive, but we never did, and we quit trying when I was 41. Oddly just after that I got really sick and crashed with my POTS. I had it mildly before, and was not diagnosed yet. I'm grateful for my beautiful granddaughters----I love them so much, and along with my son and his wife they bring so much joy. The PMS is rough too. I don't know what I have right now, as I have missed my period for 3 months now---(not pregnant---and age 50), so I'm guessing menopause----- . Be kind to yourself---------------spoil yourself doing things you enjoy. Light some candles and set them all around and read a favorite book, or watch a feel good movie. I miss work too, and wish I could be back in the swing of things. I miss Dancing, and I can't watch any of the dancing shows because it breaks my heart too much because I can't get up and dance. I used to be a good dancer. This illness steals things from us-------so we have to find other ways to bring joy back into our lives. Sometimes it can feel like your spirit has been broken too. Keep fighting for your spirit----don't let this break you. My son wrote this poem for me when I first got sick; Dime Store of Hopes and Dreams Wandering in the shadows, alone and distraught The unquestionable strength of a few, ignored by the masses So crass, so un-empathetic, no one understands It feels like no one ever will, all your zeal spent At the dime-store of hopes and dreams In the middle of the night Spouse, mother, brother sister Awoken by screams entailing those dreams unfulfilled No one to turn to, a wasteland of unawareness The futile fruits of passionless practitioner?s labor Makes backwards strides in the context of you, hurt At the dime store of hopes and dreams Doctors look at full shelves of needs and wants For compassion, and healing energies Boxes of broken homes, and broken hearts Not even acknowledged by so-called care-givers Not a care in the world to give I am the son of a wanderer in the shadows I too do not fully understand the extent of all this But I have bore witness to the pain, and the strength In no way can I put myself in your place, or say I ?understand? But I can say this: the war on ignorance is a war of attrition In the dime store of hopes and dreams, you have found Your token of pride, your undying will to survive Mike J. Dessert It made me cry when I first read it------this is how he saw it through his eyes. I never knew how deeply he felt about my illness, and seeing me suffer.

I DO SCREAM if people don't have good hygene. It's so easy to do! Put your face in your elbo, or use a kleenex--------WASH YOUR HANDS! To me, this is very thoughtless to expose others , especially if they could get the flu much more severe then yourself. I am so careful to avoid the public, and if I do have to go out, I make sure I do everything I can to not spread my germs. I get angry at people who are careless and make me sick. Last year I got very sick, and had a high fever. I was never so sick in my life----SCARY! I couldn't eat, I had upper respiratory issues, and had the worset body aches ever. Take hand sanitizer with you everywhere. If a store doesn't have disinfectant wipes to wipe your cart down, use your hand sanitizer to rub it all over. If your nose itches, use the back of your forearm. Use your feet to open doors---especially in public bathrooms. Be extra careful in hospitals----washing hands frequently, or using sanitizers. Right now I'm freaked out because I feel that old familiar feeling up in my nose just before I get sick, and I'm having that fluish feeling-----although mild----but still very afraid because it just started today. My BP is good 112/77 because I'm drinking a lot of fluids, and my heart rate is 68. I took my temperature, and it's 98.6. Normally it runs low, so it's a little scary. My husband has had a cough for two weeks now, and he's now on antibiotics since Friday. I'm struggling with other issues with my cervical/cranial area, and it's already got me feeling bad on top of my POTS issues. I'm being selfish and being very self protective this year----and plan to be this way from now on. It's just too hard on us, and we struggle enough as it is, and there's too many insensitive people out there that could care less, so if thery're going to be careless and spread their nasty germs when they're sick, then I'm going to let them have it. They'll just have to deal with it. Maxine :0)

Lately more people in the medical field have heard more about POTS then EDS. I have been in and out of different hospitals for out patient testing, MRIs, CTs, Ultrasounds ect. I've been educating them all, and a lot of them knew about POTS, but not EDS. One CT tech---or was it an MRI tect?----Well anyway, she said, "is that the disorder that makes people's heart beat real fast, and sometimes they pass out?" I said, "how did you know?". she said they have been seeing more people with POTs around. I told her there's more to POTS then that, but she had the basics. It's still not heard of much, but more PCPs are getting more knowledge on it. MY daughter in law is a manager of a Starbucks, and she said two young woman that work for her have POTS. I think my POTS symptoms knock me down more then the EDS. However, EDS is pretty serious on what it can do do your body. POTs is serious also, but more in a different way, and I don't think it's as life threatning------------------------but it sure can be crippling with the symptoms we get. It's affects everything! Maxine :0)

Thanks Anna, My ENT looked in my ears, and doesn't see anything structurally wrong. I do think it has something more to do with my cervical/cranial instability and possible CSF leak. MY CINE MRI showed my spinal fluid was partially blocked. It has flow, but it's diminished posteriorly more so then anteriorly. This CINE MRI was done in 2004. I really have no idea, but this does make sense-------------how else would fluid get back there if I have no middle ear infection history and perfect hearing? Crazy stuff............ Maxine :0)

My dog India is a big comfort to me, along with my family as you can see in previous post---- My wonderful husband helps make everything easier for me---- This is him at my son's wedding with my granddaughter when she was 8 months old. now she's 20 months as you can see if previous post. Oh---and we have Samantha, my 16 year old girl; And of course, my boy Spencer Maxine :0)

Thank you so much----- That last picture was at thier honeymoon in Maine. Her grandparents have a big cabin up there, and they both had a blast. One night they made one of thier favorites at the campfire---lol This is one of the nights we helped out with the girls, and we took a picture of Mackenzie---AKA----Kenzie They bring so much joy to us. Maxine :0)