Jen2533

Hi Ken, The Mayo will take appointment requests from anyone but the quickest way to get in is with a referral from your doctor. Since your doctor brought it up he/she should be familiar with getting the paperwork together. I would recommend following up with them in a couple days to make sure the ball started rolling. In the meantime, get all of your medical records together...any test results, sickness you have suffered, surgeries, family history, primary complaints, etc. I have a binder with tabs, each tab represents a body part and the corresponding test results go into each section, after those sections are a section on my full medical history, a section on illnessess in my family tree, and anything else that may be relevant. I numbered the pages and put a table of contents on the first page so the doctors could easily find everything and any test that had abnormal results I typed in italics in the table of contents. This makes everything go much smoother and the doctors will LOVE, LOVE, LOVE you for it. It will also allow you to avoid replicating tests (which costs more money) and should allow you to finish sooner than if they had to wade through everything on their own. I hope this helps and the best of luck to you, you will be in good hands at Mayo. jen

Yippee!!!! I am so happy that it is working out for you as well. It is a wonderdrug in my book. I'm feeling so good that I'm going to start back at work next week. I'm easing back in just starting with 1/2 days but I can't wait. I've also started doing yoga which is really helping the way I feel overall. I just wanted to let you know how excited I am to hear you are feeling better and that you were able to get the timespan, it is so much easier to not have to pop pills ever couple of hours. Jen

Hi Everyone, Sorry I was missing in action for a bit. I had a great week last week with a final confirmed diagnosis of POTS and Myasthenia which is responding very well to treatment...hooray!!! So, I am supposed to get compression stockings and before I spend the money I wanted to ask about the size. My cardiologist said he could give me a script for thigh highs but most of his patients find them annoying and end up getting the knee highs over the counter. I am 5'6" and weigh 120, I lost all my muscle and most of my fat while waiting for a diagnosis so my calves are quite small. However I don't want to get them so tight that it hurts. What is the best size for other petite ladies out there? Thank you so much! Jen

My POTS causes blood pooling, which lowers my o2 sats, my cardiologist told me to lay flat with my feet elevated for a half an hour when this happens. I did this and wore my pulse oxymeter and my o2 went back to normal and I felt better. The only time I can't do that is when I get the POTS symptoms post eating as it causes severe reflux which causes heart burn, and on, and on. HTH. Jen

Jenna, In regards to the reflux I find Mylanta liquid works best for me but I want to caution that you not take it within a hour before/after you take your medication as it can block the absorption. That is true for all antacids. For school (my husband is back in college to finish his degree). He is concerned about his grade in one of his classes and was wondering if there was any protection of his financial aid as he has had to be my caregiver for 1.5 months of this semester. Do you know where we can get info on this? Thanks, Jen

Hi Jenna, Welcome to the club, you will get alot of good support and information here. I just saw my cardiologist on Friday and was confirmed to have POTS. I also have Myasthenia Gravis. I don't know if it was the POTS or the MG that caused the O2 problems for me but when I had my 6 min. walk test in June my 02 dropped to 80 and didn't go over 88 after they gave me the supplemental oxygen. My pulmonologist prescribed 2lpm during exertion and 3lpm during sleep. My ultimate goal has been to get off the oxygen. I went through a crazy amount of tests over the summer and thorugh the fall. Last week Wednesday I had my ABG exercise test. We are still waiting on the results from the blood draws but I passed the exercise test and pulmonary function tests (that I failed twice previously) with flying colors. The cardiologist thinks the combination of the Mestinon, which I started Oct. 5th for Myasthenia and the Adderall I am on for Adult ADD have kept my POTS mangageable and he doesn't recommend changing anything right now. They said I could stop using the 02 during my sleep and said to monitor my 02 with my pulse oxymiter (which I got for $35 online) but it looks like I can ditch the tank...yeay!!! I would recommend asking for a PFT to get an assessment of your diaphragm strength and if it is weak see if they would be willing to treat you with Mestinon. It is my miracle drug. The ABG excersize test wasn't too horrible, got a bit dizzy, pre syncopal stuff but they numbed my skin before they put the artery cath in and that was the part I was most afraid of. Good luck to you, if you have any other questions on the ABG or supplemental oxygen just give me a holler...btw, I am 32 so I know how an 02 tank is not the accessory choice of the season but it works wonders if you need it, and at least for now you do. I wish you well and hope you are able to manage your symptoms well. Jen

I'm happy to see so many people participating, and glad I'm not alone in my distrust. I found out that the weekend I was in the hospital in June was the worst week of the year to go to the hospital. It was the starting week for students working their first time in the hospital. The statistics show the first few weeks in June result in the highest deaths of ER admits...yikes! Keep the responses coming, good way to vent and know we aren't crazy:)

I'm really happy to hear you are getting some relief! I hope it lasts. I have seen quite a few people on here taking singulair. I'm new to all of this and still on the diagnosis road but all sign's point to POTS. I was just wondering how singulair helps with POTS. Thank you, Jen

Happy Halloween everyone, I have some questions that have come to mind while I have been dealing with all these nasty symptoms. Just wondering how many of you are similar to me. I'll list the questions and then give my answers but I am very curious to see how you all feel about these subjects. 1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I used to keep in close contact but have found that the answer is always the same...on to question 1... 2. How many times do your doctor's say go to the ER? Everytime 3. How many of you have given up on the ER? I have due to the cost, the lack of interest if it isn't a heart attack or appendicitis, and the massive waste of time and energy. 4. What do you recommend? I don't have any recommendations, just confused. If I felt before like I feel now all day everyday I would have immediately gone to the ER, now I'm desensitized knowing that they won't figure anything new out and just discharge me with a ginormous bill. Thanks to all who participate, Jen

I'm so sorry you are going through all this. I have been on short term disability due to not being able to walk 50 feet without a break, double vision, extreme weakness, unexplained weightloss, and fatigue so bad I can't get out of bed for 2 hours after I wake up. It is extra rotten when it feels like the medical establishment won't listen. When this all came to a head and I ended up in the hospital in June for three days it had looked like I had a stroke. My left side of my body didn't work, my right side of my face fell, and I couldn't open my left eye. My the time they had discharged me, they had ruled out a stroke but I still couldn't walk unassisted, I fainted in the hospital on morning three, I couldn't tie my hair in a ponytail or cut my own food b/c my left hand was so weak. When they discharged me can you believe that they said I could drive and go back to work the next day and said it was likely due to anxiety or a migraine (even though I had no head pain which is rare for me as a real migraine sufferer). I left feeling crushed and deflated. I felt like no one except my husband was taking me seriously. Thankfully when I followed up with my GP he realized something was very wrong and made a promise to stick with me to get this mystery solved. He is the only reason I even subject myself to more doctor's appointments. I have shed so many tears after being treated like a whiner or someone who wants to milk the system. Excuse me, I worked full time from home with one hand that could type and one eye that could see for 4 weeks. After they put me on oxygen I went back to the office, so humiliating having to carry my air around with me at the age of 32 but I did it, I didn't want to end up on disability but months later when they still had no dx or treatment and I was chronically late getting to work I told my GP I needed some time off. He was surprised I didn't ask sooner. I guess my point in this for you is two-fold, 1 - you are not alone in your pain and frustration and 2 - there are doctor's out there who actually went into medicine out of compassion instead of ego (thought they are few and far between), find one that can be your anchor and go from there. On a side note, about the narrow pulse pressure - this intrigues me b/c when I was hospitalized my bp remained low which has been the norm for me. One night it went down to 78/49. The nurse came in and wanted to restart the IV, I really didn't want that b/c they had already over hydrated me and I was still all swollen from that. I mentioned that I skipped my adderall dose and asked if she could bring me that and recheck me 5 minutes later. Instead she paged a doctor and 10 minutes later came back and said they didn't treat low bp with adderall (in the amount of time it took her to do that she could have given me my dose which was over due anyway but whatever). They pushed the fluids and got it up to 90/65, then finally agreed to give me my medicine. The next time the cuff inflated the machine read 110/65 which is my normal bp. I was so mad. After i saw my GP it was 90/80, he thought that was strange and got another cuff - same reading, he had me come back the next day and it was normal. My question is what does it mean when the pp is narrow? I have had a handful of similar readings at various appointments. Jen

Hi thankful, I was rx'd Mestinon for presumed Myasthenia on the 5th of Oct. I had horrible side effects like you describe until we got my daily dose straightened out. It took about three days after that and all the side effects went away. The biggest problem I had was how weak I became in the morning. The medicine only lasts for 4 hours max and with it wearing off in the night it actually set me back further than where I was when I started it. They added Mestinon Timespan to take at night (it releases over 9 hours, 60 mg at a time) and I'm seeing a HUGE improvement. Good luck, everyone reacts different but with my response to POTS meds and my symptoms it looks like I might have a shot at managing my disease. Hope this helps, Jen

Thank you for your warm welcomes and letting me know I'm not becoming a cyberchondriac Caron - I see you have Hashimoto's as well. I have noticed (through the myriad of blood tests they have done, in the past 6 months that my thyroid is going crazy. I was Hypo in June, Hypo in July, Hyper in August, Hypo in September, and normal in September...Makes me think it's connected. My Endo says no but my neuro says that my body seems to have more intense problems with each fluctuation. What has your experience been? Thanks, jen

Hello everyone, I am new here, not sure yet if I belong but I have been quite sick since Spring 09. I have the doctor's pretty much stumped. My neurologist's best guess is Myasthenia and he started me on a trial of Mestinon at the beginning of October. What intrigued me about Dysautonomia is that when I had my acute attack in June the only medicine I have that made me feel better is my Adderall, I also started spontaneously consuming large amounts of water. When I began to feel a little better on the mestinon (I'm negative for all of the Myasthenia tests but the neuro says there are some people who don't have a positive test and still have mg), I started researching the medicine and found that Mestinon is also prescribed for Pots. I have a pulse oximeter at home and started monitoring my heart rate. When I am laying down it is between 50-70 and when I stand up it raises between 110 - 130. I also have purple toes and leg and finger swelling if I stand too long and have a history of fainting at least 2 times a year since I was a teen. My neuro said they may order a muscle biopsy to look for a Mitochondrial disorder and I noticed that Dysautonomia can be a symptom of that. The other disorder I will bring up is EDS, I meet all of the joint hypermobility criteria and my last CT shows that I have a dialated aortic root. When I looked at all of your stories they rang so true to me. I see my cardiologist next week Friday and will ask him for the tilt table test, I hope he is willing to try that. I'm starting to feel like I am annoying my doctors b/c I feel so lousy and they don't have a difinitive dx or a cure. I'm currently off work as well and want to get healthy enough to go back so bad. I'm getting depressed fighting with the insurance company and trying to explain to friends and family what is going on. I look forward to meeting all of you and hope to find some answers soon. Thank you, Jen