Miriam Poorman-Knox

Absolutely this is for Doctors and there is a paper copy too. When my husband comes home I'll have him copy itor get another one, and mail it. Miriam

I have been wondering about gatorade. I have been told not to have more than 100gms of carbs/day, because of blood pooling in stomach. I drink such great volumes, and think a gatorade type beverage would help. I understand we are all different. I have heard that there are some sugar free kinds of gatorade. Please give me some feedback. Since everyone should be following their docs orders, I'm wondering if there are any ideas. Miriam

The goblind ate my very insightful thoughts, so I shall try again. Make sure that the drinks you have contain no sugar-even gatorade. Keep your cooling vest etc on shen you can. Get many bottles of salt tabs, and always keep one with you in your pocket, car, at the houe,home etc. Always stay hydrated. As for telling the squad, they might feel that you can't back them up- and you might not. There are studies at the NIH check their website, there are some in april for a week. Its free. I agree with ?Merril the medicine you take is usually taken with the sodium and not taken at night, unless that is your shift. You have it on alot of us, as you must be in shape and that helps. Get a medic alert bracelet, that says to give Iv fluids. I have one. Peace and wellness Thanks for doing what you do Miriam

Steph, I tried to order them today and they are out!!!!!! With the web site down any other suggestions, guess MCO would have the one. Miriam

Think ist impotant to get this checked out. Even after 10 years. Do you have a BP cuff??? Also do you salt load when this happens? Miriam

Thanks, my husband and I wrote a list tonight. I will fax it if that helps. I did have questions even before I left. They said he was sick for the last 3 days I was there. Thanks for all your care and support, ya'all don't know how much this means to me. MP-K

I too felt "friendless' before my doc told me about this wonderful group. I too feel immensely blessed. BTW. Can always go to the cities. Went to Seminary there!!!!!!. Hope you had fun for a while, and by the way what wonderful spouses/significant others,animals we have. All creatures great and small!!!!! Miriam

I called Dr. Low's message service this afternoon and left a message for him to call me back RE:test results. Wish me luck Thanks for your inspiration and care Miriam

No, I havn't. I am so defeated. Plus he changed my meds I have PAINFUL neuropothy in both hands and feet!!! I guess I need to get some of my spine back. Miriam

ABSOLUTELY I DID

That seems like an awfully large drop in a short time period. That will make you tired. See if your doc can more slowly reduce the amount. Miriam

Hi Dawn, Just returned from Mayo. They will give you a schedule, but each dr. adds more. You will become a"checker" and no not at the grocery store. If an appointment isn't convienient you go to that dept. and give your info and wait to see if someone is late, doesn;t show up etccc I put 3 weeks into 2. Please take someone with you. The patient reps are very kind and if you can't get in sooner for something they will have the nurses ask what is convienient and schedule you. Hugs-- Miriam

Florinef and mireodine- now dr. low changed it to inderal, and it works. Keep some food by your bed, so you can eat take meds first then get uo. There are some good low carb bars out there. Keep suggesting things. I had to have I.V.'s at home for months. Home health delivers them and will even give them. Miriam

I agree I just googled "pots" and there was an article on tilt table testing-- they wewe even wary of people with diabetes taking their insulin prior to the test. My major let down is that I was diagnosed with severe pots, I.V. at home every week, ER reguarly... This was supposed to helpmy docrors here know what next to do!!!!!! That was my reason to go. I still am doing what I had before, but we don't know the next step. Might check out a NIH study. Heard they treat you well, and its free. Miriam

Another option is physical therapy. I have had good results, and if its not working they will call your doc and let them know. Next time you see this "GOOD DOC" make sure to get enough with refils!!!!!!!!!!!!!!!!!!!!! Blessings Miriam

So sorry that you have to deal with this. My kidneys have shut down 3x in 6 mos. Remember if this helps, they will do the ultrasound, but if they find anything disturbing they will call you doc right away. blessings Miriam

<{POST_SNAPBACK}> I just want to know from dr. low "how accurate these tests are" when you are on a full compliment of medicines ?????????????????????????????????????

I just returned grom Mayo Mn and they did not do that test on me. I know that my heart is a problem. This is being treated. Miriam

<{POST_SNAPBACK}> <{POST_SNAPBACK}> [/quotI What I still don't understand is can these tests can be accurate with all the equalizing meds in me????????????????????????????

<{POST_SNAPBACK}>

I got the final report from Mayo today 1 week after I left. I don't know what I expected, but coming back from OZ, more than I got. Dr. Low's 10 liner said that I didn't show that I had Potts on the tilt,,etc....but I take florinef, metopronol and 4 tabs of salt a day. I wouldn't it would show up. He did say that I have orthostatic intolerance. I think the evaluation I had here tilt etc was more accurate as my bp's were 60/30 etc. Plus I had no other substance in my body. There really was not a plan to follow just an opinion and a diagnosis. He didn't reiterate how much urine I needed for 24 hr test or the number for sodium, he told me but I can't remember. There were some other things EVERY specialist that I saw interpreted my medical records differently, so in their reports you couldn't be sure that it really was the way it happenned. Some things they found were helpful, those docs explained everything to me while I was there though. Soon we are going to be able to bottle my whine!!!!!! I spent 2 weeks 15,000 in ins money and close to 2 of ours and I still don't feel any smarter. not smarter visable. Will bottle this whine for now. I'm going to go listen to music or something. Miriam