Ernie

Hi,

I am back home.

I had a safe trip both going and coming back. I had a lot of help at the airports and even on the shuttle. I had my scooter and this permitted me to be independent.

The purple is gone now. All my clothes were stained. I hope I will be able to wash them.

I will not get my medical report before another 2-3 weeks.

Hi,

I have a polar watch and I am very satisfied with it.

Hi,

Ask your mom what she suggest as a solution to the grocery and cooking problem.

Hi,

It is very exhausting to be a caregiver for a long time. Your mom could join a caregiver support group.

You could negotiate with your mom that she does the grocery and you help with cooking and washing dishes.

Hi,

I went to rehab for 6 months and it did help me. I stopped because I could not handle to go to that hospital anymore.

The employees believe my POTS but they don't monitor me besides taking my vitals before and after I start exercising which I find very annoying.

My Dear Friends,

Thank you very much for the well wishes and the advices.

I am leaving in about 4 hours and arriving at the hotel at 11:00 p.m. tonight.

I will be thinking of you all.

Love

Hi,

Proamatine or Midodrine.

Hi,

I got diagnosed with my medical proof at NIH by Dr Goldstein. I could not find a competent specialist in Canada and was diagnosed with all kinds of garbage can disorders. So one day I decided that I needed to find a real specialist.

In 2007 I was in the hospital for 3 months. All the doctors wanted to send me in a nursing home for the rest of my life and I refused because the medical care here is so rotton and I knew my life expectency would be around 6 months. So I pleaded to go to rehab. So they sent me to rehab and I fainted every time I stood up. The doctor did not want to rehab me because she did not want to assume the medical risk of my injuries. So I escaped at night and trained on my own. After I was stooled by my roomate the doctor gave me permission to train with an employee. But I was always the last one on the list and was only permitted to walk at around 10:00 pm when the other patients were asleep. So I escaped my room some more and the doctor gave me more freedom. They still wanted to send me in a nursing ome because I could not wash myself or go to the toilet without fainting. I told her that I wanted to go home anyway. So she accepted. It took me 9 months before being able to take a sitting shower. A year after I lef the hospital I was well enough to go to rehab twice a week.

They made a special program for my needs and it helped me improve some more. I just joined a group of elderly people where I train once a week. I know I am much younger then them but it feels good to be able to do something that other people can do.

Hi everyone,

Well the big day is coming. I am flying to Mayo tomorrow and will see Dr Low. This is my last trial at getting answers to my problem. I hope he can help me.

Ernie

Hi,

I have both diagnosis. I was bedridden and in a powerchair for 7 years. I almost died twice in the hospital in 2007 and managed to get out and went to rehab for one year. I am now able to walk. My main medication is Proamatine and Procrit.

Hi Janie,

I am really glad that you got a throrough visit at Mayo.

Thanks for the update.

Hi,

Wow, I don't know how someone can survive at that temperature. I hope the temperature gets back to normal very soon.

Hi,

I am also a lab rat and I feel the same way about most researchers. They only care about their study. Once I was paralysed and doing a postural study. The nurse forced in a pill in my throat and I was so afraid to choke to death. I could not swallow so the pill sat in my mouth for about 5 minutes. Either they didn't believe that I was really paralysing or they just did not care if they killed me.

Researchers believe that they are doing us a favor and that we are dependent on them. I stopped being a research rat at many hospital because of the abuse going on. My family does not want to participate in research for that reason.

Hi,

For the past 8 years I have never stopped pushing doctors and other professional to get diagnosis and treatment. Now I am so tired of going to the hospital 4 days a week that I stopped going to the PT and another professional last week.

After I will have gone to Mayo I will stop investigation and start living my life with the limitations I have.

Hi,

Welcome home!

You must be so excited to finally be able to sleep in your own bed.

Hi,

I took it for low blood volume. I don't remember what side effect I had but I stopped it after a few months.

Hi,

Thanks everyone.

I am not happy to have another disorder but I am happy to know what I have. It's such a relief.

Hi,

Thanks everyone for your help and suggestions.

I went to the hospital with my husband this morning. It was about 10F. He had no trouble breathing and I had to stop walking every 20 feet or said to take my air in. I was wearing a fur coat and breathing in the fur and even then I was hard.

I also have trouble eating cold. I have to eat a room temperature otherwise I get sick.

I will mention it to Dr Low and see what he thinks.

Hi,

I took it for about 6 months and did not find any effect.

Hi everyone,

Thank you for your suggestions.

I decided to try a pillow mattress, which is a 2" mattress that I put over my regular mattress. I tried the most expensive, which was too hard, and decided to try the cheapest which I like very much. So tomorrow I will return the expensive one and keep the cheap one.

If it wouldn't be for all my meds which cost a fortune, I would consider myself an unexpensive woman!

Hi everyone,

I just received my medical file by mail to prepare to go to Mayo. So I finally have a diagnosis for my GI issues:

Thanks again for your continued support.

Hi,

I had an abnormal EMG but the neurologist never followed through.

Hi,

I always have my blood drawn supine to avoid syncope.

Hi,

I sweat in all position but when I am standing it is as like I just came out of the shower.

A normal person standing should have a HR of no more than 15 BPM from the resting HR to the standing HR.

Hi Maxine,

I am sorry for all the stress you are going through. It is hard to have a loved one being sick and even worst when having a disorder that stress is a trigger. You are very devoted to helping your brother and his family. You have to be careful about yourself because your health is fragile.

I don't know if I have the same arythmias as you do but sometimes I feel that my heart will stop and it frightens me. The doctor said it were PAC and PVCs. I also have the K+ problem which makes my heart feel like jello and unable to contract. It might be safter to go to the ER when you have those episodes.