Miriam Poorman-Knox

Same thing happenned to me in my physiology class years ago, also my pulse was always high. It is part of the physiology of dysautonomia. I think that at that time it was a clue that I missed. As my doc said yesterday:If anything bizarre is going to hapen it will be to you" and that applies to all of us. We're special. Not in the way we would wish though. I think it would be good to keep a journal of all these things so when we know more you willbe able to been there done that!!!!!! Miriam

Kare, I had problems with the get up and go, and I have been on ritalin for 3 years. It comes in Extended release tablets as well as regular tablets. I would talk with a career counselor or the dept of BVR, which helps in retraining people. Miriam

Blackwolf is soo right. Start now working with your doc to get info and apply for these programs. They are paperwork intesive for your pcp, but this is enough time to get started. See if your doc has samples, if so he/she can ask for more of the ones you need. Also I would start "needing more" now and saving them for later. Will keep thinking. MP-K

Actually my migranes got better when I started florinef!!!! Havn't had one since last Sept. Normally had one 3-4x mo., and had to go to the ER. Just goes to show how medications effect each of us differently. Miriam

I AM SO SORRY THAT THIS JERK DID THIS. yOU DO HAVE UNDER THE FEDERAL LAW HIPPA THE RIGHT TO WRITE TO THE DOCTOR AND ASK THAT THIS BE REMOVED FROM YOUR MEDICAL RECORD. you could talk i person with him, take a witness and give him the letter, have him sign for it. As this will affect the medical care you receive. Also I would ask EXACTLY WHY he thought this was appropriate. If no datisfaction contact the local medical society, they will speak directly to him. However, write the letter to have this removed along with your reasons. Because even if you do not have records sent from him the insurance company will ahve this diagnosis. If you need help writing the letter let me know. Blessings and peace Miriam

> P>s> I HAVE BEEN MARRIED TO APCP FOR THIRTY YEARS AND CAN NOT TELL YOU HOW MANY NIGHTS HE HAS HAD TO GO BACK TO FILL OUT DISABILITY FORMS> SOME MAY HAVE NURSES FILL THEM OUT HOWEVER THIS DOESNOT RESULT IN APPROVALS I DO TAKE OFFENSE WHEN ITS ALL OR NOTHING IN OPINIONS ABOUT DOCTORS> I have worked in doctors offices as office manager and this was the policy, for them to do the paperwork. Miriam

Did you ever consider calling and leaving a message for Dr. Low? It usually taked 3 calls, but he does return calls. This way you could ask him about YOUR SPECIFIC need. Since you have such feelings about physicians, perhaps you could volunteer to talk to residents or local docs about your diagnosis. I have and have been asked to do more. There are many many physicians who are compassionate and want to help. I HOPE YOU CAN GET SOME PEACE> MIRIAM

This is so timely for me. I had a rah on my breast that was itchy and painful. They did a biosy on it, and the result was that my mast cells were majorly involved. I also have had other situation where i have had significant hives etc. I went to the dermatologist and he said that it was my mast cells. I have had to start antihistamines which really dont work bur I said I would gicee it 1 month till my next appt. I will have the urine test done when I have my 24 hour urin this month. It was comforting that my dermatologist knew this was due to pots and how to treat it. Thanks everyone. Miriam

What is it with your thumbs? Miriam

I spoke with Dr. Low specifally about this. The reason he no longer does this is that he spent 2 years really aggressivelt working on getting these approved. He went to court and did the paper work for 20 patients (a good sample) and noone got approved, because this diagnosis IN NOT ON THE APPROVED LIST so he no longer is doing this. He told me that since there are so many things that are also pots and CFS which is on the list to try for that. That indeed some of his patients who appealed or reapplied got approved on the other diagnosis. He is working to get dysautonomias added, which will take forever. Miriam

Hi, I understand the controversy involved. I have been taking xaxax on and off for many years. It is a recommended drug for pots. Also, dor panic attacks. The important thing is to take thecorrect dose. It starts at .25mg and goes to 2mg. I only take it prn, and my doctors don't have a problem with that. I certainly would ask for some for the flight. Don't be afraid to ask, just tell them its on the list of approved drugs for pots and for your panic attacks, and if they want to start you out with a certain # of pills. Blessings Miriam

My neurologist noticed that certain places in my feet were numb, while others painful. Not long ago about 2 years- I couldn't even take my shoes off in docs office they were so sweatty and smelly permeated the whole office My feet have been much MUCH more noticably cold and painful since the change from metroperol to inderal. and change in Synthroid. This has been a process. Miriam

Opus, I justreturned from mayo, and had the sweat test. Dr. Low said that the pain in my feet and hands is neuropothy-caused by the loss of the ability to sweat in my feet, hands. I have pain also. It 's not always there but every day for some. I get neurontin next week. Miriam

Actually this was when I had my gallbladder. The pain after eating may be because either you are eating carbs.(they pool blood in your stomach) or some people dairy. I eat 6x a day small meals. This has helped alot. My doc says to eat only 100gms or 200-400 cal day. This has helped soooo much. Where do you live? you can e-mail me miriam15221@yahoo.com. Miriam P.S. what I had was a CCK-HIDA my gastroenterologist finally got it.

Caitlin, I do know of some people with this problem, on a list from my area. It is a rare one. I wish I xcould help. But didn't want you to feel ignored. This is a tough way to live. My problem was delayed emptying from my gallbladder, had that sucker removed, it helped alot. Take care. Blessings Miriam

Hi sorry cant remember all the letters brwneyedchica? I have not had this problem,I've been married almost 30 years. And during almost all of it symptomatic. As a chaplain I have worked with both chronically ill and their partners. I do believe that the way you explained your boyfriend, that you being "with" him is important to him. By that I mean to be seen. A generalization, men are less able to communicate their fears, frustrations, needs, and tend to put a date on it and run. I know many people who have met their significant others at church, support groups, even work. The important thing is that you ARE DOING THE VERY BEST THAT YOU CAN DO!!!! Don't let this send you into an autonomic storm. We are good,motivated people, who much like a tea bag can only be used only so much each day no matter how much you conserve. (I use only one for a whole day, my gram did that too). Please lean on us as much as you need. This site is life extending. I would be lying if I didn't say that this puts a tremendous strain on marriages also. The difference is that we ARE married. My husband and I have an agreement that I don't have to go (first this was intended for camping,backpacking) but that he could go when he wanted. It works. I see you work full time. When I worked, I worked, then went home and slept till time to get up for work. Thats my life. Take Care- Hugs and blessings Miriam

The weight issue is certainly an emotional issue for all of us. Since what we have is a "syndrome" meaning that different organs etc, are effected for each of us. My doc told me and she was right that my weight would fluctuate 5-10lbs/day. I try and it works to eat 6 small meals a day. Every time my exercise is on schedule and feeling better, another thing happens and can't exercise. We are all at different stages of dealing with this disease, so we all can't be in control. Certainly eating complex carbs is great. I understand that the lady from Mi.is very stroong and has had many reasons to be in total control. As a fitness specialist, who had until 4 years ago 25% body fat, now its 33. So its not lack of wolpower, but most of us have gained a significant amount of weight before diagnosed. Also remember the thyroid factor, and get that checked to be sure that is ok. Blessings to all. Miriam

I have experienced this type incident. What hwlped me always was an IV my doc gave me ascript so home health delivers it to my house. You can, and I have many, many times gone to the ER and told them that I needed IV and that I knew my hr was wierd but needed IV---and I have gotten them and walked out. They all commented on hoe well I know my body. Let them know that you do. Perhaps this will help. Miriam

I too have the acheey breaky bones. Went to my doc, she said its part of pots. The last time I had it basd was in my paws and shoulder, couldn't work them. Make sure pcp knows. And see what they offer. Warm baths with a space jheater are nice, not the same as a hot bath, but still. Miriam

Welcome Lynne, I understand hoe hard it is to have a child with such a complicates and misunderstood diagnosis. I worked in Houston as a Chaplain for a couple years at a cancer hosp, and a childrens hosp. I agree that the tilt table is important. There are studies/ or were for adolescents with pots. Michelle our moderator has put a link at the top of page. One easy thing is to give him gatorade or electrolyte beverages to make sure he is hydrated, and has enough sodium. The other would be a evaluation by a physical therapist, at childrens or the one they farm you out to. This could help. And yes, children who have illnesses like this can have a significant amount of anxiets, as well as adults. He has been dealing with this for a while-- he is probably afraid. I have always believed that a therapist is your gift to your self!!!!!!!!!!!!!!!!!!!! Although after the required # of hours in Seminary, I go less often. He may really benefit from this. Of course I assume you have a neurologist. Ler me know if I can help, I still have some connections. Blessings Miriam

THANKS

What about having the MRI etc. sent to the chiari docs to read? Does that make sense? I don't know all you are going through, but a thought. Prayers and blessings Miriam

As long as your cardiologist is on board, and you keep track of your b/p etc. My cardio said I couldn't ever go off my beta blocker. Blessings Miriam

HOW ARE YOU? Sounds like this is affecting everyone. I am new, so I don't know much about your situation. We too have a bungalow with alot of stairs which is hard. If you need any help let us /me know Miriam

for what its worth, it wasn't until I was on florinef that and midrodine that I really could see a positive difference. And it took them a couple of months to add florinef. So keep them informed, Miriam