Ernie

Hi Dawn, Sorry about the question. When I read your answer I remember you posting about it not long ago. You had a real difficult time too getting into Mayo. I will really have to figure out how to get into to proper department. I don't want to see Dr Low but it would be someone in Metabolic or Neuromuscular disorder. I really hope to get the help in my own country but it is safe to know that there are other options. Ernie

I think it's a good idea. When I went to see Dr Grubb I was at the MCO bookstore paying for his "Syncope" book. I told the cashier that I was feeling wrotten and passed out on her. So I was rushed to the ER and Dr Grubb came to see me. I guess I could have a similar accident close by Mayo! Is that what you did Dawn? Ernie

Hi Nina, I am sorry you have bruises from the EMG. It will take a few days to disappear. Congradulation on your nephew. Ernie

Good luck with the EMG Nina. Ernie

Hi Tearose, Happy anniversary. Thanks for being there for all of us. I always look forward to read your posts. I like the way you see things. I hope this year will be full of joy and happiness. Ernie

Thank you all for your wise word of encouragement. This neurologist is pretty young, he graduated in 1999. So I guess he is about 33 years old. My cardiologist referred him because he is open minded and he likes challenges. The poor neuro told me that he did not expect a case like mine at the end of the day! I can understand that he felt discouraged by my case. 2 years ago I was told by a neurologist that he did not want me as a patient because I was too much work, I would not payoff and he was not interested in learning about me. At least this young one says he wants to research to make his own mind on the subject. He is even willing to meet my family members who have the same muscle problems. Maybe I am just panicking because of all the bad experiences I had with previous doctors. I hope that this one will stand up to his word. Those of you in the US who have insurance, Medicare or Medicaid are better off than we are here in Quebec. Only the ones who don't have insurance and/or can't afford to pay are worst off than us. Avais, thanks for the information. I was not aware of that but I will seriously consider it if things don't turn out here. Could you tell me more on how you did it? Maybe you could write me a personal email! One thing I am proud of myself is that after the 2 syncopes the resident wanted to send me home and I kept telling her that I did not feel well enough to leave then. The resident told me that it was 5:00 and the office close at 4:00 and I had to go. The volunteer who drove me there wheeled me to the entrance and called the security guard and told them that I was too sick to leave the hospital. I was sitting in the wheelchair, I could not think clear but I knew I would faint outside in the cold 0F with 2 old people in their 70s who would panic. Then I would be paralysed for at least 10 minutes on the ground and would have to wait for a stretcher and people to lift me up. The only thing I kept saying was "I won't make it to the car." So, this is when the resident sent me to the ER. I am glad that I was kept in the building until I could safely make it to the car. I think I have a variation of the white coat syndrome. When I see a doctor I automatically assume that I will be made fun off, ridiculed and mistreated. I wish one day I will forget all the bad experiences I had in the medical world. I might get some more news this week as I called the cardiologist on Friday and I also left a message at my PCP's office. Ernie

I know that for me chiropractor is making me worst and massage helps. I have stopped going to the chiro years ago. Ernie

I am really glad to be taking salt tablets because I have more muscle strenght and have less presyncopal events. Also, when I faint I don't need to go to the ER to get an IV. I know salt is not good on the kidneys but I have many fall injuries so if I have to choose between long term effect of salt and hurting myself when I fall I will choose the salt. Ernie

What a terrible experience you had. I don't understand why doctors just don't listen to their patients. It's as if we don't know our body. I am glad that they agreed with the lower dosage. How you doing better? Ernie

Thanks Opus, That encourages me to continue with holistic medication. I am presently taking Chinese herbs from my acupuncturist and I have made small progress. I feel that I can progress some more. I will keep looking for what works for me. I'll try the magnesium and chromium because I already have some at home. Ernie

Hi Opus, Thanks for sharing your positive experience. Before I crashed 4 years ago I had a similar regimen as yours and it was working well. Then one day my doctor gave me a medication (a vasodilator) that made me crash so hard that I have not been able to function without the chemical medication anymore. I just don't know what to do to back up and "undue" what that medication did to my body and be able to function without chemical medication. Do you have any ideas or suggestions? Thanks Ernie

Hi Jill, I live in the Province of Quebec in Canada in a large city. We have many hospitals but not enough doctors. Some people can't have a general practitionner because they don't take new patients. They have to be treated at the ER when they are sick. When a doctor retires you loose your doctor and you might not get another one. Here the medical system is like the third world. We have to wait a year to see a specialist and if he does not like your attitude he just tells you to find someone else. I had to go to Dr Grubb 2 years ago to get my diagnosis because no doctor here was qualified to do so. I payed out of pocket money and I am glad I went because it changed my life around. Now I am starting to wonder if I need an American neuro-muscular disorder specialist to find the next diagnosis! Ernie

Hi everyone, I am sorry that I did not give you the update of the appointment yesterday but I fainted 3 times during the interview and I was really exhausted and out of it. I had to be taken to the ER until I felt well enough to leave with a friend. The appointment did not go as expected. I got in his office to learn that he is a specialist in epilepsy. So I asked the resident if I had an appointment with the wrong specialist and she said that he is a neurologist. So when the specialist came in he was wondering why my cardio referred me to him because there is a specialist in neuro-muscular disorder in the same hospital. The interview was on the aggressive side because I had waited for 3 hours and was exhausted, brain fogged and hungry. He had to repeat a few questions 2-3 times because I could not concentrate. Then the resident started the basic neurological tests and I fainted as soon as I stood from the exam table. I got up too soon (my ego) and stood again to continue the test and went down immediately! Boy what was I thinking about! The doctors told me to wait on the floor until I felt well enough to sit. So that ended the physical exam. I was disappointed at myself. The neuro told me that I am a very very complicated case which cannot be diagnosed in 15 minutes. Ah! I was not aware of that! So he wants all my NIH medical file and he wants to research POTS and NCS on his data file. I told him that Dr Goldstein said that I am the only case like that that he met in 25 years but the neuro still wants to check if its the same disorder that causes the muscle problems. I am frustrated because I already know that it is something else. He told the resident that I have some form of myotonia congenita or/and periodic paralysis. He told me that he did not have a diagnosis and that he has to research and will call me back when he is ready. So I don?t know if I went there for nothing or if it?s positive. I was well treated at the ER. The resident explained my case to the triage nurse and I was put in a semi-private room until I could leave. I think they gave me a semi private room vs corridor because of my high adrenaline rush. The only test he ordered is an EMG which I have 1 year waiting list. Ernie

I am sorry Dawn, I don't know where I was looking or where my mind was but I just saw your post. Thanks for your suggestion and thanks Tearose for pointing it to me. I don't know if it's brain fog or shear panic. I did a short search on Metabolic Myopathy and it surely looks like my symptoms. Even though I have the POTS and NCS diagnosis and I am as desperate as I was before getting those diagnosis. It's like I can't think straight or as if I had a gun pointed at my head. I know it is physical because there are at least 4 of us in my family that have this muscle weakness problem. Please pray for me so that I finally get my diagnosis, especially since Metabolic Myopathies are treatable. I want so much to have a better quality of life. I know you guys know what I mean. Good night. Ernie

Hi, I was wondering if any of you have problems with "My Assistant". I have not been able to load it for the past 2-3 days. It might be my computer or something else? Ernie

Thanks Amy and Steph for the advice on testing. I wonder why EMG don't show why we have muscle weakness. It might be something else than the electrical current that is not working. I hope that they have other kinds of tests that will show what I have. I'll keep you posted. Ernie

I am glad Emily went well and that she is recovering. Keep us posted. Ernie

My niece took 4 months to get pregnant, my sister got pregnant the first month (2x). Ernie

Good luck Emily, We'll be waiting for you. Ernie

I heard of someone who had plasma infusion and she said he helps her a lot. I don't remember where I read about it so I can't tell you more about that. I don't even know if it's the same kind of treatment. If I remember more I will tell you. Ernie

Hi Rachel, Welcome to this nice forum. I have not been tested for the muscarinic receptor but I know that I have an extremelly high adrenaline level. What are the risks involved in the medication? Ernie

Hi, I am getting prepared for my neurologist apointment Thursday and I would like to know if any of you have any suggestions on the tests that I should ask my neurologist to order. My symptoms are muscle pain, muscle weakness and paralysis. Thanks for your help. Ernie

Thanks everyone for your wonderful advice, I am integrating what everyone has said. I am working on my medical history. I am trying to stay focus and calm but I am as stressed as if I was going for surgery. Talk about adrenaline rush! Yes Rita this is the appointment I have been waiting for many months. Dawn, I have not had any medical investigation besides POTS and NCS. I was always referred in psychiatry for any problem I had and that was it. Now that I have a real diagnosis some doctors are starting to listen to me but this is new. I was told he is a specialist in muscle disorder but when I took the appointment the secretary told me he is a specialist in epilepsy. So I guess I will find out when I see him. I was told by my doctor that this specialist is open-minded. I told my cardiologist that I did not want the neurologist to think that I am a Martian! Geneva, I'll post under another topic to have suggestions on what test I should ask for? Thanks for the suggestion. Ernie

Hi Opus, I am curious about what nutrional modification you made to get your health back? I have asked many specialist what I should do about eating habits and the only advice was to avoid caffeine. Do you have others "tricks"? Thanks Ernie

My niece who just gave birth last week had trouble breathing during the lasts weeks. She also had lower back pain. Ernie