tinkerbella

Thank you tennille, I got the good sense of humor gene from my father. We were very witty together. I carry it on in his memory and try to instill it in my children and grandchildren. You have to laugh in life. I'm l@@king into laughter yoga online. Maybe to learn and to giveback to those who help me so kindly. Laughter is the best thing we can do to release stress when we are unable to exercise. Check it out ~ Another thing always be an ADVOCATE for yourself in the medical system. If you can't find what you wan,t look for a study. My mom always said, "God helps those who help themselves." Life isn't always easy, but add a Big smile and always tell your doctor everything that is going on at every visit don't assume they know. Get copies of your chart, make corrections. Everyone makes mistakes, I just learned that We ASSUME they know everything from the other doctors who send them notes. Check for mistakes, as other doctors use voice to text when writing notes. so it is so important to check everything. This all becomes your medical history. We are so lucky to have Todd who has walked the walk and talked the talk and can guide us. I'm so thankful for everyone here. For the input whenever I may need it. this is the best forum ever where people really care for one another. x's BellaMia ~

YOU'RE a sweet heart ~ I hope you get a good doc and find out answers you are l@@king for also. I love your posts here also. Now pack your bags and move up here. LOL!!!! I need more local potsie friends. What are your seizures like, do you remember? BellaMia ~

tennille, I'll beam you up here and we'll get you hooked up and dxed my friend. If you are going for a dx the doctor said don't start any more supplements, as they can give false readings for the test. But he did mentioned for me there would hopefully be a cocktail LOL!!!!.I haven't had one in ages to try to reverse to damages done, but this could all just be POTS worsening and It looks like I have had it since I was a child and that it looks like it runs in the family..... Although, it very well could be mito too. It is very hard to remember everything when you are alone and it's late in the day, and you are exhausted and missed your hydration that day. Duh, what's up Doc????? Tell me more, tell me more!!!! Darn I should have recorded the visit with my i pod. Woulda, coulda shoulda.... Oh well!!!! DIDN'T ~ BellaMia ~

The New Doctor thinks I'm having seizures. So you know how we research everything. Really wanted to watch a TV series today ~ Autonomic Symptoms http://www.ehow.com/info_8085525_seizure-activity-symptoms.html Interesting what they say about them , even if it's just a little blurb. BellaMia ~

Thanks Todd, L@@ks like I need help or a mini course in mito 101. Nothing is easy when you are tired and you already have a bazillion things to do. Please feel free to be my guide and tell me what to do along the way. Thanks for your help and kindness ~ Maybe there's a group on facebook that I can just read and not join to gather info or someplace that birds of the feather flock together ~ BellaMia ~

Had my first appointment the other night, at 4 pm. First the doctor was the nicest doctor and I was truly blessed, to even be seen by him. First start, MRI he was concerned I'm having seizures. Left hospital 11 pm. We will meet in 4 weeks and decide if I'll be admitted to complete the process. One night did me in for two days. Don't know how I'll ever do the rest of the tests. I told him I could never repeat the level111 Stress test. I already came back neuro / muscular disease and my body would not take it.The way I bleed I don't know how I would ever do the biopsy right now either. When the dear doctor asked who brought me, I could not remember my friend's name. Good thing he has a wonderful sense of humor and my friend also. Whew, I passed the dementia test.... I don't know how!!!!! He gave me so many clues to all the words I forgot. I'll never forget Texas, Blue, or Honesty ever again in my life. I really felt like I was in the hands of an Angel though ~ God is good, I'm very Blessed ~ If anyone thinks anything is going on a mito wise, do a family medical history on paper. Look at your mother's mother and down list everything. Then about you. Write down everything about you that may be different about you from your siblings and similar with your mother. Write anything similar with siblings. Write anything similar with your children that you see and the same with your grandchildren. This would have been much easier if I had a form to fill our before hand. Having hit my head just recently my responses were slow and I come from a large family where people don't talk about being sick, maybe in denial about me, or it's easier to look the other way. Good Luck to all ~ HUGS~*~ Bellamia ~

My plummy spec. says you should never bring up blood. If you do try to put it in a container and go to the doctor asap. The only times I really have were after the breathing tests. First for the cardio/plummy Blaird 111 level stress test and then years later another breathing test. They always want to know the amount of blood... like a tsp? So try to remember these things. I used to choke all the time before getting hydrated, I still have to drink, drink, drink or I'll be dry, dry, dry... If you are thirsty, your body is telling you too late that it is dehydrated so drink. Is your mouth dry? Eyes dry? They are always looking for sojourn's syndrome. When in doubt , check it out. Bless your dear child for helping you out. Bellamia~

I believe I see them showing up in my feed.... Also like I said before, they can are scanned by Google the same as these here do , but here many us use different names. It makes me upset as I would like to meet more people with Pots, Mitro, Mast cell, but do not want the whole world knowing my business. That is why I tighten up my privacy and share with my potisie friends as I find them on my page. I can tell a group of potsies when I know them all and I can't enter into the conversation..and if I'm wrong I'll find out and report back to all. I'll ask my friends. All I ask for is privacy, especially when it come to medical in a group. Especially when there are all the Hippa rules everywhere you go. I feel those groups break your Hippa privacy laws by sharing. I believe what is said in a group when someone is using a full disclosed name should stay there. Facebook is misleading to many people. Many people don't even know their walls are open for full view, that facial recognition has been used on all there photos, and once again should you miss a notice which I never see about privacy all your settings are at risk. C H E C K T H E M all weekly, I thought monthly was safe enough ~ x's Bellamia ~

Here are some inexpensive products for cooling. I have had some similar neck ties that were great. Bellamia ~

Looks like I need a cooling vest. Found this website with good info and where and how o get discounts on medical conditions.. http://www.mitoaction.org/red-tape/keeping-your-cool-cooling-vest-types-sources-financial-assistance Any other info I'd love to hear.... Thanks, Bellamia ~

I'm so very sorry Leize. Try to look at this at a new chapter in your life sweet one. The story is yours happy or sad so try to each day to the fullest! You know we are here for you and we all understand. Most of us have had a similar story. I wish I could give you a great big hug in person. When one door closes another one opens, sometimes it's much better, so keep your eyes open. Meanwhile, take a deep breath, breathe and relax. love, Bellamia ~

Flip flops are from caffeine. Stop it and see what are not from it. Dark choc. will act like a blood pressure med. I used to use dark choc. after being allergic to BB's and Cinnamon. I had a pretty expensive habit going there. lol! I had to stop the choc due to the increase in tachy. But my cardio was great in letting me try ~ The dog is a barking....gotta go ~ Bellamia ~

Hello Julie, Do you just use you eppi for when you can't stop itching??? I'm so confused Dr. Castell's had to decrease my gastrocrom because of all my neuropathy increasing. She was afraid that maybe I was having side effects to the med. Hard to tell as they got scared and pulled two at once and I'm still not right. I'm going to start making a cream from the liquid.. Have you ever done that? Itchy Bellamia ~

Noreen, How are you? I was just going to look you up....I miss you!!!!! My son told me to stay away from that Google plus, He warned me don't touch any of the settings, as it will send eyery page you visit to all of your friends. TMI, For me and Google is trying to make their own facebook page and compete with FB by Google +. I hope all is well with you, I have been back just a few days. Like Dorothy, from "The Wizard Of Oz", there is no place like home!!!! clicking my ruby red slippers. Bellamia ~ x's love you my friend ~*

Even though you delete your posts good oh googleiegoo has most like scanned the page... Oh yeah! and it is collected in it's catche @ the bottom of the page on on the internet list of posting. Once again it makes me ! So come here and pretend your someone else ~ or your pet Oh, they won't let you do that anymore. You have to be a real person now, but have you noticed all the little kids on there? What's up with that? Bellamia ~

My cardio doctor came to visit me while I was getting infused today. He has been very concerned about me and that I have not improved in the past 3 1/2 years. I was seen in the ER the other night for near syncope and hitting my head over and over again. After going into full details of the events that are taking place in my exciting world at night, it sounds like I'm may be having seizures. He's setting up a halter monitor, I think this is # 101 and I see my PC in the morning. Then he said, " That is why I'm so concerned about your leval 3 stress test that came back suggesting neuro/muscular disease". "When yours came back there wasn't much thought about Pots pts and mitochondrial Disease and now we are seeing many come back like yours who end up having mitochondrial myopathies". He sat on my bed as he told me all of this and how all of this is going to get me a really good intense work up. Then I continued to tell him more and more things that have gone wrong, My body falling to sleep and my memory since the falls, the stroke like eposodes, how the mestion helped my drooping eye and elephant on my chest. He was so excited about all the work, Mass General Hostipal In Boston is doing now in this area. Then latter on I googled mitochondrial myopathy and I got scared and started to cry. I wanted a real hug, but my dog didn't want to come over and hug me right now. He's usually ontop of me, so he knows something's up. I don't want to cry and scare the dog because he has seizures now. He's been seizing for a year now and I think I've been seizing longer, but been in denial. When I think of how my dog looks trying to walk when he has a seizure, that is how I look trying to get back to my bed but can't. So, please come to Boston if you need to be tested. You can call Neurolology ~The Movement Clinic @ Mass General Hospital, Boston, Ma. OK, NO FEAR NOW, I just had to tell someone I was scared. Going to bed so I can get up early for the PC. Come on doggie, we are going to bed. love, Bellamia ~

Funny I forgot about the elephant on my chest feeling and that my left eyelid used to droop. I have been tested twice for MG and each time NEG. I really think with all the meds and @ that time hormones for a cancer scare that how could they tell anything was right. I was told that the hormone made blood tests unreliable. So, after being prescribed too much when I was first put on it by the pharmacy, as they had put the wrong instructions on the label and I landed in the hospital for a near bowel obstruction. I now read the instructions and verify with my notes from the doc that I'm taking the correct amount. Always start with a small amout like someone said above, as the side effects can be nasty. I'm rather limited in the med department having tried most and having adverse reactions. They have worked my way up to 60 mg three times a day. The tablets when starting out are smaller amounts and need to be cut. They crumb in hot climates and you can be left with crumbs in the bottom of the container and not enought pills to take. Docs can't prescribe more than the amount needed mine told me. Most docs don't know this comes in a liquid form. Found this out by the Neuo Pots Spec. You will end up with about 8 bottles costing $800 dollars, so I hope you have insurance. You will get one small plastic bottle to pour the large one. If you have IBS go very SLOW. We have a love/hate relationship, but what can I do? I thought that was why they named it POTS .>>>-Bathroom this way --->>> Bellamia ~

I really don't feel much better, but I'm learning to live with Dysautonomia the best I can from this bed of mine. If I'm taken out one day, I'm drop dead tired the next. I couldn't live without my infusions bi weekly. I'm running out of venous acess and scarring. Docs are afraid of infection so they have avoided the port route till the day they can't get in. Last week took four tries. Now when I go to the ER the new question is, "What is all this scare tissue all about"? My new reply is, "I'm infused twice a week in the infusion clinic and they then go look at the LMR". I'm a constant advocate for myself. So still having a little F I G H T inside of me ( but being N I C E on the outside is my main concern ) My wheelchair motorized, walker, having a commode in my bedroom, having a chair in the shower, learning to cut my own hair on youtube, having some in home appointments PT, Nurse, OT, and a few more. Letting go and letting G O D ~ Letting someone come in and clean. Having someone come and organize starting next week ,Keeping a cooler of drinks, food ice packs, in my bedroom. Having a loving D O G who is on top of my always. When I can't take it anymore DRAW or WRITE or CRY in the shower. Then I remember, I have 3 K I D S and TWO little G R A N D B A B I E S who love me like crazy and that is the best medicine in the whole, wide, world!!! P.S. Did I mention my F R I E N D S? Some of them are A N G E L S ~ * Bellamia ~

Ollie, I'm so very sorry to read about your GI issues ~ I wish I had a magic wand ~~* to make you all better ~ All I can offer is a prayer right now and support when ever you may need it ~ B12 is wonderful help, as I think we should all if able get that. I do and find it's a help ~****~ I don't know where you are from, but where I am from the worst Pots pts. get infused. I can't miss mine twice a week. I'm very blessed ! I wish you the best in finding a doctor in your area ~ mwise, was very right, we are F A M I L Y ~ * ~ H E R E ~ Bellamia ~

That sounds exactually like my level 11 cardio/plummy test there without the breathing part. Did you just have the workup in the Movement Clinic @ MGH ? That is where I'm going. They were so nice to me in the stress labs after the first test and I had to go back I thought I must be dying, as they treated me EXTRA nice. Then at the end they said it never took so long to get a blood gas back on a person. They had to keep drawing and drawing till they got a normal one. The wrist thing, I had the same problem. I won't explain as it got too graphic. I felt like I was in a horror film all the time the doctor made me feel like Queen for a day. Warm blankets everywhere. On the chair, on me and the made my friend leave the room when he came in at the end. They wouldn't let him see anything. They couldn't get my hr back down and kept running ekg's till @ least they got it to what I came in at and that was high. That's the one where I came out neuro/ muscular disease ~ I sure hope I don't have to do that test again ~ I don't have enough energy anymore and I think I would die ~ I started to tell you about the stest and then took it all down, cause I didn't want to scare you ~ I'm just so tired of all of this and all these tests ~ I've had a biospy years ago, but they feel I've gotten worse. I would love to hear about your work up in the clinic and who you saw if you don't mind. If you have the time sometime. Hope all is well ~ Did you get your results yet? Off to bed for tonight ~ Night Night all ~ Bellamia ~

You poor dear newbie. Welcome to our forum....You must feel just terrible! When my ferritin was 4, I could barely lift my head to get my meds and water each morning ~ There are many ways to bulid your iron nutritionally, as I'm allergic to iron I had to go that root. IRON STORES MAKE YOUR HEART work and function better. Doc said eat tons and tons of spinach every day, cook in cast iron, prune juice and blackstrap molasses all are good sources of iron. I crave liver when I'm low and have since a kid, if regular iron is too harsh on your stomach, there is a slow flow iron you can buy over the counter. You sound very smart, and must know all of this already. Glad you found us and please know you can count on me as a friend ~ I'm sure you read what I just wrote to another new member and the same goes to you ~ I believe all of us who enter here are brave souls, as I peeked in for one whole year after I registered. I was so scared peeking and reading. I would go back and tell my doctor everyone was just like me and it was like someone had been looking in my windows \@ me. Then the day I took the brave step I met the nicest people, but my foggy brain had the hardest time with the forum setup. Other forums I belong to for other things had been so easy I was so embarrassed @ my messy posts calling out for someone to help me. I think they thought I was nuts, but if you need any help with this setup I'll do my best to help you ~ It's a newer setup and I still don't have the hang of it all yet ~ Well newbie, I hope you start to feel better real soon and build up your iron level asap. It will really make a big difference in how you feel. It will be nice to get to know you and get to read your posts ~ So Welcome aboard my newbie friend ~ hugs ~ Bellamia ~ It's been a rough week ~

GOOD INFO FOR ANYONE HAVING STRESS TESTS ~ YouTube - Stress Test‏ http://www.youtube.com/watch?v=_4-MKeULN10 I never knew all of this info....plus they have other videos n all kinds of stress tests. Good luck with your test ~ Bellamia ~

I'm glad you asked this I'm going for a mitochondrial work up here in Boston @ Mass General Hospital. I was told I would have a muscle biopsy ~ Maybe my doctor wanted to save the rest for the MG doc to tell me about, as he said it was an intense work up ~ I've had a level 1 and 2 Stress test that lead them to believe that I had congestive heart failure and neuromuscular disease ~ Since my pots has not gotten better in 4 years and since January I've been admitted to the hospital 3 times not able to breathe and with viruses. My doc wanted to take a deeper look @ all of this. Are you being worked up for mitochondrial? I'll go and googliegoo it now and see what I can find ~ I hope you are OK. Is it 1ii and not 111? Just checking and off I go to look it up ~ x's Bellamia ~

Firewatcher, you really get an A+ in finding all these articles, as always everything you find is medically interesting, thanks for posting ~ I really appreciate the work you do searching these articles out for us. My cardio has told me that the belief is that there is an autoimmune disease behind POTS. He has told me this several times, hence I have had several workups as many are hard to catch ~ I always have a high ANA with the pattern that is for Lupus. I'm always told I could have sojogren's syndrome and would I like to start the meds as they are the same for Lupus. Maybe they will help, than my PC tells me they are worse than the cure and she knows my history with meds. I trust her so I have taken her advice. She has been right on and thankfully that is what is good about having a PC who has stood by you for over 16 years. I'm go once again to a new one either this week or next for another opinion ~ I'm so tired of being poked and probed, but thankful very @ the same time. I only pray that I have the energy to make it to these intense, long appointments alone ~ Bellamia ~

Here's a link from the Mayo Clinic explaining them all: Choosing blood pressure medications - Mayo Clinic.com http://www.mayoclinic.com/health/high-blood-pressure-medication/HI00028 I know when I first started I had no choice but to start with a beta blocker.I quickly showed allergic reaction and went to Ace Inh and the same thing happened. I then got a really cool cardio who let me try dark chocolate and Cinnamon, but this was in the still not knowing what was wrong with me stage. I also have Raynaud and seeing that the side effects of all of the about were unacceptable we went to Calicum Channel Blocker. My doctor told me most patients work well on beta blockers and are able to have a near normal life. I have met some of those people. I'm not the norm like many others here. I wish you the very best, just always keep an open communication with your doctor. Keep good notes, list any side effects and if it's not a good fit change the med. Bellamia ~