Ernie

Hi Julia, I so believe your story. I had something similar 18 years ago when I had a car accident and went to see the government's doc. I was denied for pension and treatment and when I saw the doc's report he said that I was malingering everything. I never contested their decision because I was too sick from the car accident to think and act properly and fight. It took years of treatment and a LOT of my pocket money to get functional again. I am glad that you will fight back because those doctors should not get away with writing false reports. After all you pay taxes like everyone else and deserve your pension. Ernie

Hi Morgan, I wish you the best of "luck" to be chosen to go to NIH. Dr Goldstein and hs team are really special because they take good care of us. I have been leaving messages to my neuro-muscular specialist for the past 4 months and he does not return my calls. He was suppose to run a full battery of test on me last October and the hospital does not call back. I called 3 times last week and the secretary does not want to give him the message anymore because she said that he already knows that I am calling and he knows what he is doing! I understand how frustrating it is not to get the medical help we need. I will be praying for you. Ernie

Congradulation, I am sure you will love them equally. This is life treasures. Enjoy your good time and be careful not to overdo it. Ernie

What a tragedy, I will be praying for you. Ernie

Hi Morgan, I am trying to be practical and helpful so here is my suggestion. Can your PCP give you a script for IV and you give it to yourself? I know some patients have that permission. Since you are a nurse you would not need the training to put in the needle. That would be more useful than arguing with ER doctors and you could take some whenever you feel you need it. You would no longer depend on the doctors' power. Ernie

Hi Morgan, I had something similar happening to me when I had a colonoscopy. I had to take Pedialyte for 2 weeks and natural herbs to clean up my system from the drug they gave me. I my case it was 2 things, intoxication and dehydration. Ernie

Thanks Lisa for doing the research and finding this out. I will save those numbers. Ernie

I am sorry that Emily is going through a POTS whole. I had the same thing happened to me when I had a surgery. I have no idea what causes this drawback but I wish Emily a good recovery. Ernie

Hi Ginger, Nice to hear from you "in person". Yes, I wear my hoses every day. It makes a big difference has I can remain upright x2 more time when I wear them. It's funny that they prescribed you the same medication as I am taking. We must be very similar, medically! Thanks for asking about the myotonia. I am looking forward to have their hypothesis. Ernie

Hi Morgan, I can't answer your question because I have no experience with this medication. I am sorry that your doctor has not very much to offer you. I have not been posting much lately either. I miss reading your posts. I understand how you feel. Ernie

Thanks Ginger for sharing the good news (your progress at Mayo) with us. You are in really good hands and I am glad that the doctors are trying to find solutions for you. You will know your body from A-Z after you're done! Keep up the good work. Ernie

Thanks Dawn A, Steph, Kristin and Opus, Opus. the Chromium you are mentionning, can I use one from any producer or does it have to be from one special brand?< Kristin, the last time I paralysed was last month during the neurological exam and after I was done. I paralysed about 6 times during the exam. Since I know my triggers I avoid them as much as possible but when I have a neuro exam they trigger the paralysis. My paralysis is also triggered by fasting and straining. There are a lot of my family members with POTS but I am the only one who paralyse. That's why the doctors are starting to think that I have 2 different disorders. Thanks Steph, I have gained much respect from the medical community now that I have medical proof that it is physical. I was telling my therapist the other day: "Well, I guess I won't die healthy now". meaning that a few years ago I felt that I was on the edge of dying and doctors thought I was healthy. Now I have proof to the contrary. Sooo, I am still pushing for answers. Have a nice day everyone. Ernie

Hi, I am sorry you went to Mayo for not much. Since I don't know if I have a mito disorder or not I follow the mito diet and Ido better. I also take Carnitor which helps a lot with the muscle weakness. I would not be able to function without my supplements either. I know this is a personal decision but I have tried to go without my vitamins and I get really sick. Ernie

Hi, Last month I was telling you that I went to see a new neurologist. He wanted to see my sister to compare her with me. After testing her in his office he concluded that I my muscle weakness/paralysis is not the same disorder as POTS. So I will have an EMG at the very end of May. I am glad becaus after I was diagnosed with POT, doctors would put all my sympoms under POTS without testing. This guy did hs homework and read on POTS to figure out if it was part of it or not. I feel that new doors are opening up. Thanks for your support. Ernie

That's a really sad story. I think the doctor is morally responsible for her death. Ernie

Hi Ginger, I really enjoy reading your post. It's unbelievable all the testing you are having. You must be increadibly busy. It must be really nice also to meet people from all over the world. Thanks for sharing. Ernie

Hi, Wow, you are really well taken care off. Thans for keeping us posted. I will continue to pray for you. Ernie

Hi Stacey, I am so sorry about all what is happening to you and your family. I am praying for you and sending you big hugs. Ernie

Hi, Welcome to this forum. When you are fighting a fire do you have other guys covering for you in case you pass out, ie microphone to call, checking on each other. Maybe it would be a good idea to let the guys know about your problem and plan something in case you do pass out during a fire. On a different subject our story is an example that we don't get POTS because we are deconditioned. Have you tried increasing your salt intake? or support socks? Ernie

Hi Bluegirl, Welcome to this forum. You seem to have a lot going on on your plate. I would ask my doctor on Wednesday if he could work out the meds to see if they don't have bad side effects on you. ie he could stop them all (if possible ofcourse!) and then introduce one after the other gradually. I am sure that some of them are useless if not dangerous for you. I was bedridden for 2.5 years, until I met Dr Grubb who diagosed me properly. Now I have some medications that give me a certain quality of life but I am still a couch potato most of the time. I can go out for a couple of hours every second day and I leave the house only when I have someone else with me. This way, when I faint, there is someone there who knows what to do. Good luck on Wednesday. Ernie

Hi Dawn, I think Mayo does not test during the week-end so you could arrange to go home Friday night and come back for the next week. Also, you can wait for last minute cancelation to speed up your visit. Ernie

Hi Emily, I am so sorry that you are having such a difficult time recovering. I feel so much for you. I am praying for you and your family so that everything goes well as fast as possible. Ernie

Hi M9riam, I am sorry that your testing were not done according to the protocols. Taking medications that controls your symptoms DO make a difference. For every tilt I did I had to stop my meds at least 24 hours ahead. The only time I was on meds was not for diagnosis but to test the efficiency of the meds to stop my fainting. So I would think that if he says that you don't seem to have POTS on the tilt it means that you don't seem to have symptoms of POTS while taking these specific medication. Ernie

Hi Calypso, The SNRI would aggravate me because I am already x5 times above the normal range for norepinephrine. I talked to Dr Golstein about it a year ago and he told me not to touch that type of medication because I would be worst. Thanks for your suggestion. I appreciate that you are trying to help me. Ernie

Hi Amy, Yes, I had plenty of catecholamines tests and they were ALL above normal. I am above the normal even lying down so when I am standing it gets only worst! I tried Mestinon and it gives me severe diarrhea, GI cramps and hence increases syncope. I was diagnosed with Hyperadrenergic POTS by Dr. Goldstein. Ernie