Mydoggielovesme2

Fantastic! So glad things turned out so good for you today. You've been through so much, it's about time you got a break. Good thing you didn't cancel the appt. Hope things continue to improve for you. Baby steps to a better, day, week, year, LIFE!

Boymommy, Thank you for letting us know how things went for you today. What a relief for you to have had a good Dr visit. Just having someone not rationalize way the symptoms we have is so refreshing. You sound like you are relieved, and moving in the right direction. Sometimes just to hear something positive, (ie: your MRI) can help so much. Hang in there as you continue your POTS journey! Shona

I have actually tried calendula. Unfortunately it did not help me either. Guess this is just one of those things we live with for now. Did you notice the one link on google that had the special diet, that claims to cure EC? I would love to try it, but wow, not an easy thing, especially when you have a family to feed. And pretty expensive too. But it sounds so healthy. Oh well. As far as gluten free diet. I am anxious to ask Dr at Mayo about that. Maybe that would help the POTS.

Racer, as you can see from all the "views" and no posts, this is a very difficult question, with no easy answer. Have you called your ins company? Some ins companies can asign you a case worker to help you through the process. Have you looked into state aide? Another thought, how about getting into a research program. For me, I lost my ins when I could no longer work, and finally went on disability.Sorry, Wish I could be more helpful.

Aimes, so glad you got your appt!! It's such a relief just getting that far, isn't it. I too am hoping to get tested for EVERYTHING when I see him. Best of luck to you. Shona

You mat have already done this, but in the pinned topics, mightymouse has "frequently asked question", there is sooooo much great info there that may help. Best of luck tomarrow. Let us know how it goes.

Libby, thanks for the info. In reading on a couple of those sights its Interesting that EC can be caused from chronic illness. Go figure! I am going to try the coconut oil next, to see what happens. Thanks everyone.

Katybug, are your allergies due to mcas. I suspect I have that, I have so many allergies. Meds, foods, food additives, cleaners, and on and on. ( Of course many Other symptoms)That's why I went ahead and did this post, thinking there might be some connection. Just searching for answers to all this craziness. Thanks

Hey thanks! I had not heard of that. I will try that right away.

I have had cold sore, but this is not that. This is both lips/and not in one spot. I have used every chap stick I can find. Even used olive oil and vit E. Oh well. Thanks for responding. And not laughing. I really appreciate it.

Ok I know this is probably a crazy question to ask. I know my Dr laughed in my face when I asked him about this, but here it goes..... I have the worst chapped lips, I have been dealing with for at least 3yrs or so. I have tried everything imaginable. Even when I think I have found something that works, I seem to develope an alergy to it. I have not been able to wear lipstick for years! (vain~I know) I will be fine for a wk or two, then my lips feel inflamed, and start to peel. Its very painful, and just keeps happening over and over again. Does anyone else have this, or am I alone on this one? I don't know, maybe I just gave everyone a good laugh for the day.

Southbel, I just love that response!...........I think we are all fed up with Drs not taking us seriously. So many have the " God" syndrome.I have on many occasion stayed home and suffered, when I should have been in ER or to Dr. Even my husband failed to call ambi when I had a mild TIA once. Unfortunately this can be a VERY serious mistake. So my advice is the same as others----find a better Dr!! And believe in yourself and what your body is telling you.

Drs in US by law have to give you your med records. You have to personally sign for them due to Hippa though. Some may charge you for the cost of copying. When I told all the different Drs/hosp that I needed records and CDs of films( X-rays-MRI) for Mayo, no one charged, and they had then ready within 2 wks. Good luck with your new EP.

I had to stop driving the first couple of years with this illness. I am a fainter. Then things got a bit better, so I started very small outings-less than 5 miles from home. Unfortunately I did pass out driving once. Thank goodness no one around. I don't think I could have lived with myself if I hurt someone. So now it's stay at home, or wait for someone to take me. Even though I am tempted sometimes, all I have to do is remember back to that day, and temptation no more! Also when I went before the disability judge to get my Medicare, he ask me about driving, and said knowing that I have this illness, if I were to cause an accident, I could go to jail. Well that really put an end to it.

AussieOI, I have been working with a physical therapist for about 4 wks now. It was very hard to begin with. I think the main thing is to start out slow, don't get discouraged on bad days, and stay VERY hydrated. There are days when I can do 30 min, and there are days 15 is my bodies max. She has me do the recumbent bike, and leg exercises. Bike for aerobic, legs for strengthening muscle for better blood flow return. As others said, try to do something every day. As for Dr Levines program, maybe someday, but I'm so not there yet.

YOU GO GIRL !!! If you are a point in your life/health and you are able to do more, count your blessings, and run with it. Best of luck.

Racer, Welcome to the forum. So glad you found us. I am pretty new here also, but have been so encouraged and helped by all the info here. Just realizing you are not alone is a tremendous help. I hope you find a good a good Dr.soon. This is a real problem for most if us, But don't give up. Look into Mayo, or someplace similar if needed. Also, have you tried compression stockings? And when was the last time you saw a neurologist?

Voner, I'm in western Colo, and I hate Drs here. It finally took a Dr coming from Denver to the western slope, for me to get any real help. She is the one who gave me a referral to Mayo Az. Her exact words to me though were, " I really can't help you with this problem, but we'll get you someplace that can." So still no one here in town. UGH!!

Christy, I just had a similar experience Tuesday. I am going to physical therapy tues and thurs. when I left the house to go tue my BP was 72/48. I knew it was not a good day, but am trying to be faithful to the therapy. I did the recumbent bike 5 min, at this point my bp was 92/72 pulse was87, then laid on a table to do leg exercises 5 min. Bp and pulse pretty much the sme. As I was sitting up though, I got extremely dizzy, and passed out. My therapist said I was out for more than 3 min. During this time she said my BP was 60/42, and she could hardly find my pulse, but thought it was in the 50s. I passed out two more times before leaving, and was in bed rest of day. Not sure the cause, and today's therapy went much better. Much to the relief of my therapist! I guess I scared her pretty good.

So happy that MRI went ok, and that it was clean! Hope Cardio appt goes just as well, and they can get you some relief. You may not be feeling well from adriline dump after all you have been through today. Stress is our worst enemy. Hope you feel better soon.

Issie, thank you for the info. I will bring this up to Dr again. Oxygen would be soooo helpful at times.

Issie, so many times I've felt like I needed oxygen, but Drs I've seen so far don't. ( Going to Mayo in March)I live in Co, and you can't hardly travel anyplace that you don't reach elevation above 5000. How do you qualify? For the last 6 months or so, I have had more trouble with my lung, than ever before.

Jen, do not hesitate to ask your Dr for placard. It's not worth getting into a situation that puts more stress on you. I know it's one of those things that may hurt our pride a bit, but remember, just because others may not see on obvious disability, it's there. I have had a placard for some time now, and it has been so helpful. Not only for me, but also for my husband. He feels more comfortable taking me places, knowing I am less likely to have an episode.

Ash, sorry I did not see this sooner. Here is the recipe: Breakfast Cookies--- 1 1/2 cups wheat or oat flour ( or some of each), 1/2 tsp baking soda, 1 tsp cinnamon, 1/2 tsp nutmeg, 1/2 tsp allspice, 1/4 tsp salt------- 2 tbs butter, 1/4 cup canola oil, 1/4 cup dark brown sugar, 3 tbs raw sugar------- 1 egg, 1 carrot, 1/4 cup pumpkin or applesauce, 1 tsp vanilla------- 1/2 cup rolled oats, 1/2 cup bran cereal flakes or rice crispier, 1/4 cup wheat germ (optional), 1/3 cup raisins or other dried fruit( optional) 1/3 cup walnuts( optional). Preheat oven to 350 degrees. Mix dry ingredients in bowl. In food processor place carrot, process until almost liquid, and butter, oil, sugars, egg, pumpkin, and vanilla. Process. Gradually add dry ingredients. Dough will be slightly sticky. Line a large cookie sheet with parchment paper, or just spray with Pam spray. Use 3 to 4 tbs of batter for each cookie. Flatten cookie dough down. Bake 12-15 minutes, until fragrant but still soft. Cool slightly, then transfer to a wire rack to cool completely. Enjoy! ( sorry this is all bunched up. I'm on a I pad, and can't do paragraphs.

Chaos, thanks for the thread. I am amazed how common this is. Rama I hope you are right, this needs more study's also.