Miriam Poorman-Knox

Do what I do have them write for the recommended dose and use one patch a day. The irony is that they will spend thousands of dollars. Plus fill your closet with packages of them. But, it works for me. Might be worth thinking about. Miriam

My husband is a Bagpiper..... and in a band. The understanding is he can practice, comets etc...if he can, schedule permits. They know I am not able to participate in band activities... I have been able to attend a couple performances. These are great people. Mark tells them I really like them but have to make last minute decisions about any activity. As for your husband, I might suggest "If you want me, I need you to respect my decisions. When I can't I can't. I also agree that no explanation necessary. And these are friends so to keep the social aspect this might help? Miriam

Just me- If you trust this Doctor, and it sounds like you have good reason to, I would do it. I went to Mayo for 2 weeks and had many unpleasant tests. I knew Dr. Low and his colleagues knew what they were doing and I was right. So, fear sure. He is aware of your fear, and if he feels this is necessare I would go a day early and be rested and trust. They will be able to take care of any side effects. Since you have had noone to care for you in a year, and the fact that there are DIFFERENT OTHER DIAGNOSISIS for all of us. This is an incredible opportunity. Have Faith...... Miriam

Might want to get checked for dry eye (Blepharis). One can have some tears, it has an incrediable effect. My docs say that with dysautonomia or other chronic conditions, because of medications etc. Might be worth seeing an opthamologist who specializes in the front of the eye. Just a thought. Miriam

"]Hi, I must say first that sudden death, is usually attributed to a cardiac disorder. No warning. I also had metabolic syndrome, ++++++++++ I also had a B-12 deficiency for years. Which was diagnosed as a fatty liver problem a form of hepatitis(not contagious). I was told that barriatric surgery was the only way to really "cure" it. I remember yeah, me. Its NASH. I will remember the name I promise. I did choose to have it 2 years ago. I am well. I still have POTS. And other miscellaneous stuff. I would talk to a liver specialist if your B-12 is low. Good Luck. Miriam

Nina, Sorry to hear about your steo-dad. Melanoma *****. I was assigned to melanomma/sarcoma while I worked at MD Anderson. It is amazing how it effects different folks. All are in my prayers. Miriam

I am assuming that the info is provided ? I'm in. It's my turn Miriam

Its basically the same stress on your heart w/o exercise. I had this. Got the resullts almost immediately, and could have the right meds.

I couldn't do the treadmill tesr. There is another where they give you meds to see how you respond. Its no fun but it works. Miriam

Will write more when brain is 'on ' I had an elongated QTR on my EKG. This can be serious. Especially w/sleep apnea. This is often genetic. Miriam

I would make sure to read all those stickers on your medicine bottles and see if any warn about the sun. Also taking a line from my pcp. Miriam and her specialists seem to assume every sympton is POTs. Later gater

Hello, I must admit that I have restless legs syndrome on synthroid. I am now on mirapex and a happy camper. Good to see you back!!!! Miriam

Morgan I got that, but thought he could be another resource. Its rare that someone like that gets a "pass go collect 200$". And if he doesnt know he could refer. My son graduated from UW medical school and learned about periodic paralaysis among other orphan diseases. Some of his classmated had family history and did reaearch. Just a thought. Do you want me to beat him up? Miriam

.Morgan, When I was in Seattle I ended up in theCCU. When they were going over things with me, I refused a couple medicins yntil I could get the green light from my doc. On that floor they have a phamacist who KNOWS POTS. He came in and explained thingss and was wonderful. Perhaps someone could call the pharmacy there and tell them that a former patient recommended him. I have spoken to him since that time knew intricate curves and details. I am still in Ha't have his info. But I just called and asked for the CCu pharmacist. Mahalo

I think its worth mentioning that many high schools are starting later. I was awarw when minneapolis started in 1997?. Teens body clocks work differently and it has increased learning, attendence..etc. Miriam

Morgan, "Zowee" havn't heard that in awhile. Some time the stars align and it is good. I have a letter to get to tou. I am in Honolulu,, being a grandma. My husband came a week after me and I havn't been so grateful. These kids wake up at 6AM.... My husband is an early riser. I don't know what I'll do after he goes home. You will be in my thoughts and praers. Its your turn lady. Miriam

. Dude you are in Texas..!!!!!! Worst year of my pots. I utilize AC AC and AC. Also cooling vest, hats, kerchiefs and iced drinks. For me heat is the worst. The thing is now that you know whatto look for you will be more aware. Miriam

My suggestion is since you generalyy like these doctors, why not ask them if there is a difference for them in a "clinical" diagnosis. Since you are diagnosed and havent had the locusts show up yet I would start the discussion. I have had symptoms that the specialist said I don't know why we even need to run these tests. But when they did they were negative. So my diagnosis is a clinical for that. Just a thought. Miriam

I had a hard time when I first started florinef. When they wanted to increase from 1 to 2 no way. So I alternated days so it was every other day for increased florinef. I eventually lowered my dose to .1.. A good point though is that I used to take my meds and get up about 45-60 min later after they "kicked in". It worked. Also since your activity has gone back to "normal", you probably require less. Perhaps this is a med for you that you need to increase when you will be active. Good luck...Miriam

I think that once sleep is established and a loose schedule approached is wise. My husband treats alot of people with chronic pain and the truth is that if you are getting th right treatment it "balances". Folks who just take drugs randomly to get aa need met are much more likely to become addicted. I am not nor have ever been on the drug companies boards or employed. God one he. I would ask him if he is comfortable trying this. It really eas the only thing that helped for a couple years. Now I have a sleeper that works. Miriam

Amy, How is cheeseland??? I miss... I have had these symptoms. I have neuropathy in feet and carpal tunnel in hands. Now there are many neurologic things that can cause this. I would see my pcp. Then do labe and if unsure get an EEG. Miriam

Perhaps restless legs. I thought I would explode. But doc gave me mirapex. As long as I take it I am ok.

Lindajoy, I had a major one during all my "Tiltawhils". Also when ya feel like your body is "taking off without you". I am so happy to have you back. Missed ya..M

Yes I do have a host including eye,,lung and kidney. My rheumatologist suspected this. So Tues will hope for more info. Thanks M

I have been taking Ritalin 20 mg SR for 3-4 years. The only times I was off was when I was in ICU. For other hospitalizations they still had me take it. I know when I havn't had it. I think there is a general fear or perhaps negative judgenents about this class of drugs. When I joined this family there were folks who had their coffee no matter what. And it worked for them. That is the deal "if it works for you" Good luck Miriam