Rafiki Posted August 10, 2009 Report Share Posted August 10, 2009 I'm new here and am trying to learn all I can about POTS and dsyautonomia. Two months ago I became sick with fever, sore throat, swollen glands, ear infection what I thought was a typical viral infection. After a week or so I did go to Doctor for ear infection and began antibiotics. A week later I was no better (fever and throat ok) but very fatigued and ears still a problem. I also realized that my blood pressure was dropping when ever I would stand and my pulse would jump from 60-65 to 120. I have had a multitude of tests done (blood, echo, EKG, EMG, Nerve conduction, Holter, MRI, etc) I just spent a week in hospital after fainting at neurologist's office and being out for several minutes. Most of the tests have come normal. Did show a reactivation of Epstein Barr and the MRI showed bilateral mastoiditis (infection of bone behind the ear). I have been put on Florinef and Cymbalta for about 2 weeks but no changes. I am also on IV Rocephen for the mastoiditis. My PCP wants to diagnose me with Orthostatic Intolerance and Chronic Fatigue Syndrome. I don't think I have CFS- I have no joint or muscle pain, no headaches, no fever or swollen glands (other than that first week), just fatigue. I am not sleepy or tired just exhausted after taking a shower or getting dressed. I am an American living in Nairobi, Kenya and have been very pleased with the medical care here. However they have just about reached the limit of what they are able to do and my mission organization is talking about flying me to the states for diagnosis/treatment. I would be in Birmingham, AL. I have a couple of questions One: Does anyone know of a good doctor in Birmingham?Two: If I go to someone who specializes in dsyautonomia will that tend to make them "settle" on a dsyautonomia diagnosis without trying to get at what is causing those symptoms? Three: Any tips for speeding up the process? I will be leaving my husband and son in Kenya and don't want to spend months in the states waiting for appointments. Thanks,Debbie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted August 10, 2009 Report Share Posted August 10, 2009 I'm new here and am trying to learn all I can about POTS and dsyautonomia. Two months ago I became sick with fever, sore throat, swollen glands, ear infection what I thought was a typical viral infection. After a week or so I did go to Doctor for ear infection and began antibiotics. A week later I was no better (fever and throat ok) but very fatigued and ears still a problem. I also realized that my blood pressure was dropping when ever I would stand and my pulse would jump from 60-65 to 120. I have had a multitude of tests done (blood, echo, EKG, EMG, Nerve conduction, Holter, MRI, etc) I just spent a week in hospital after fainting at neurologist's office and being out for several minutes. Most of the tests have come normal. Did show a reactivation of Epstein Barr and the MRI showed bilateral mastoiditis (infection of bone behind the ear). I have been put on Florinef and Cymbalta for about 2 weeks but no changes. I am also on IV Rocephen for the mastoiditis. My PCP wants to diagnose me with Orthostatic Intolerance and Chronic Fatigue Syndrome. I don't think I have CFS- I have no joint or muscle pain, no headaches, no fever or swollen glands (other than that first week), just fatigue. I am not sleepy or tired just exhausted after taking a shower or getting dressed. I am an American living in Nairobi, Kenya and have been very pleased with the medical care here. However they have just about reached the limit of what they are able to do and my mission organization is talking about flying me to the states for diagnosis/treatment. I would be in Birmingham, AL. I have a couple of questions One: Does anyone know of a good doctor in Birmingham?Two: If I go to someone who specializes in dsyautonomia will that tend to make them "settle" on a dsyautonomia diagnosis without trying to get at what is causing those symptoms? Three: Any tips for speeding up the process? I will be leaving my husband and son in Kenya and don't want to spend months in the states waiting for appointments. Thanks,DebbieDebbie, There is an Autonomic disorders and Mitral Valve prolapse center in Birmingham!The Mitral Valve Prolapse Center of Alabama880 Montclair Road, Suite 370Birmingham, AL 35213Phone: (205) 592-5765Toll Free: (800) 541-8602Fax: (205) 592-5707 As to speeding up the process, no clue. Try to get your doc or Mission coordinator to make your appointments for you.Best of luck! Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 10, 2009 Report Share Posted August 10, 2009 Debbie, You are wise to consider that every dr. will "see" things in their own area. If your dysautonomia symptoms are new... that is a good sign that they are secondary (I have had my symptoms for 11 years). I think that you should consider seeing a good general internist. Also considering that you just were sick and you are living abroad, you might want to see an infectious disease specialist. (that's where I started when I got sick years ago when traveling- unrealated to POTS though). I was misdiagnosed for years because I went to a cardiologist and then endocronologist. A general internist finally diagnosed me properly because he was not looking for anything (prejudging). I know a great infectious disease specialist in Delaware... you might want to make sure that you don't have a parasite or something first. If you want his name and number PM me and maybe they can refer you to someone in AL.- God Bless you please ignore my spelling -karri Quote Link to comment Share on other sites More sharing options...
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