Ernie

Hi Ginger, I have just read your post to Miriam offering to ask questions on our behalf. I would have some questions that I would be curious to find an answer or a hypthesis. I would like the answers to be as medicaly technical as possible. 1- With hyperadrenergic POTS, ie adrenaline x20 to x100 above the norm and noradrenaline about x5 above the norm. What could be causing muscle weakness, pseudo myotonia and pseudo periodic paralysis? 2- What medication would help with this muscle problem? (I already am on: propranolol, proamatine, salt tabs) 3- If he has no idea, what specialist should I see, other than neurologist? Thank you very Ginger for your offer. I will probably never be able to go to Mayo because my government does not pay for out of country care. I appreciate that you take some time for me. Ernie

Hi Miriam, You are right. The testing was thourough. I hope that you will get the answers you are looking for when you get the reports. Ernie

Hi Miriam, Nice to see you back. I am sorry that your visit did not go as you expected. What kind of tests did you have this time? Ernie

Hi Julia, Congradulation, that's a wonderful news. I hope they will find a good treatment for you. Ernie

Thanks Sophia for the nice document. It's the first time I read it. I found it interesting and refreshing. Ernie

Hi, Sorry you got your daughter's virus. I am glad that you managed to pick her up at school. It must have taken you a lot of your resources. Ernie

Hi, I had that test a year ago and the year before and it is not painful. They inject a product and take blood samples while you are lying down. It takes about 30 minutes. No worry. Ernie

Hi Pam, Welcome to this board. I am sorry that you have so many health issues. I understand your concerns. I agree with the others that you should ask for a TTT. That's about the only way I know you can be tested for dysautonomia. You can ask for an EP or a neurologist who knows about those disorders. We have a list of good doctors on this board. Maybe you could have a look and find one in your area. Ernie

Hi Pam, Thanks for your help. My brother had a heart attack a few years ago and he had a stroke 6 months before he died. He had an enlarged heart. My brother also had POTS and NCS. We don't know for sure if he died of consequences of POTS or something else. A few of my relatives also had strokes, heart attack, diabetes, POTS and NCS. We rarely have cancer. Ernie

Hi Pam, Thank you very much for the forum. I have just posted about this muscle problem and I will see what happens. Ernie

I know exactly what you are going through. I did my bachelor (just graduated) by will power and lots of help. I had to cut on number of classes and missed many of them. I kept fainting in classes, elevators, corridors, washrooms you name it! I had an attendent who took care of me but it was very very very very difficult. I would never do it again. I cried many nights because I knew I had to stop school (I wanted to do a PhD). I thought I would have a depression if I stopped! The funny thing is that I am "enjoying" life a bit now because I can do little things like going to the movies, doing some grocery, visiting my friends. Those are things that I could not do in 4 years because I had to recuperate from the daily faintings. It makes me sad sometimes when I think about my friends in school who continued at the graduate level but I know I gave more than my best. I sacrificed my health. After seeing 8 specialists who all confirmed that I was disabled for the rest of my life I figured that it was not worth the financial and physical investment on continuing my studies. Deep down I know that if ever I have the capacity to go back to school, I will jump on the wagon so fast that nobody will see me leave. But for now, I have decided that I will be happy with what my limits permit me to do. (Even writing you those lines makes me cry because I still miss school. It was my life.) I am making new friends. This takes a few months but I have some new ones who accept me with my disorder (fainting) and take care of me when I can't function. Our dreams are very important when we are young adult (they are when we get older too but at a different level) but if some life circumstances makes them close to impossible we have to stop fighting and find dreams where life will be easier. I wish you to be happy and fulfilled. Ernie

Hi, Would it be possible to find a doc who would let you try Xanax or something similar? Ernie

Hi Pam, There are a lot of my family members with hypertension and some have had strokes. I know at least 3 have low potassium but I was never below the normal low side. I was tested for Cushing and it's negative. I have not been tested for Conn's. I could check with my doctor. Thanks for your help. Ernie

Hi Pam, I don't really know which medication my brother was tried on for his hypertension. I just know that nothing worked even in massive doses. We don't have a clear cause of death because he was the first to give his body to science with this form of POTS so they have nothing to compare to. Ernie

Hi Tearose, I am so sorry for your denial. You surely don't deserve to be treated like that. You are such a generous, compassionate and honest person. I would appeal again and never give up. Have you considered that if you try to work again you will prove them right, ie that you can work. They already acknowledged that you are disabled and they rejected your claim on a "technicality". I don't know the American laws but I think it would be good to talk to your lawyer about it and find a strategy. I think you have every right to post about your concerns, especially because you are always there for us. Hugs Ernie

Hi Mary, I am so sad and frustrated for you and your daughter. I just can't understand why doctors are so irresponsible or careless. I don't have any medical advice. I feel for you and your daughter. Ernie

Hi Julia, I don't know if I could give you sound advice but I am the type to try a lose of the med and if it works I increase and if it makes me sick I stop it. I am also med sensitive and risk taker! Ernie

Hi Blackwolf, I am sorry for the loss of your dear aunt. Take the time you need to mourn your loss. I hope you managed to sleep and that you have a good doctor's appointment. Ernie

Hi Stacey, I am sorry that your dad and your family are going through a rough time. I don't know what advice to tell you because it seems that your family is trying everything I would have suggested. I'll be praying for you. Ernie

Hi Nina, I am sorry you had a fainting episode today. I know how bad you feel. Take the time to rest properly. We will watch over each other. Ernie

Hi Amy, Congradulation on your perserverance. I am glad that you finally found a doctor that will help you. Ernie

Hi Julia, Wow, I am really impressed with your fluency on medical terminology! I am glad that your appointment went reasonably well. Take care, Ernie

Hi Caitlin, Welcome to the forum. Ernie

Hi Julia, I will pray for you so that your appointment goes as expected and that they find a solution for your pain and worsening of symptoms. Ernie

Thanks for the update Merrill, I am glad you are home and I hope you are safe. Take one day at a time. Ernie