Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

alsgirl2000

Members
  • Content count

    3
  • Joined

  • Last visited

Community Reputation

0 Neutral

About alsgirl2000

  • Rank
    Newbie
  1. New to Forum, Essential Tremor but concerned

    Thanks Linda. I could probably go to another Neuro without a problem. I have Cadillac insurance, thank God. I'm in Chicago, he's at U of C and is an MDS specializing in Parkinsons. I didn't mean to imply I didn't think he isn't good, just that he's rather young, maybe a few years younger than me, so perhaps more cautious than a doctor with more experience. And then I am also young so even more reason to be thorough and take a wait and see approach. I am actually thinking about the need to move to a single level home at 42.
  2. Hi, I'm new here. I've been reading a bit for a while, but I have an appointment coming soon with my MDS and have new symptoms. I'm hoping you could give me some pointers on questions to ask when I see him. My history. I am currently 42 and first noticed my tremor in March 2012. I didn't worry too much about it at the time, and didn't see a neuro about it until 2015 when it had become impossible to hide. At the time, my neurosurgeon for an unrelated condition referred me to an MS neuro who diagnosed me with Essential Tremor after two visits and put me on propranolol. My next appointment was scheduled 6 months later. She left the hospital (a teaching hospital) and I was transferred to an MDS. I have been seeing him for two full years now and feel that he is very thorough and listens well, although he is young he is an assistant professor. At my last appointment I happily informed him that my aunt told me she was also recently diagnosed with ET. He replied, "well that makes me feel more confident in the prior doctor's diagnosis." So it now occurs to me that I have been seeing him for two years and he has never actually diagnosed me himself, but instead following my case closely. I see him every 3 months. My last appointment he suggested I switch to the med combo propranolol and primidone. In the meantime, since 2015 my tremor is getting increasingly worse even with meds. On a good day, the meds help maybe 50%, on a bad day like today they seemingly don't help at all. The tremor is bilateral, but significantly worse in my left leg and hand. Most days I have a hard time typing, texting, and can no longer eat soup/sushi or drink from a cup with one hand in addition to many other things requiring manual dexterity. It is in both hands, both legs, my voice and slightly in my head. About a year ago I developed nystagmus in my eyes that happens randomly when shifting my eyes from one point to another. I can't make it happen in front of the dr, it's completely random. He seemed unconcerned although I did see a neuropthalmologist that also was unable to replicate it and diagnosed me with perfectly healthy eyes. Since my last appointment (Dec 2017) I have begun dropping things. I am slightly ambidextrous so I often do things with my left hand unconsciously even though I am right hand dominant. I have dropped things from my left hand four times, so I guess I need to stop using my left hand to pick stuff up. Three of the instances, my hand jerked and then I dropped the item I was holding. This morning I dropped a fork, no jerk this time. Maybe I hadn't gripped it tightly enough but given the last three episodes I'm paying more attention. I am also noticing a weird kind of numb sensation in my left arm and leg. I am physically active, I do high intensity interval training 3x per week. Maybe it's related, my hips are killing me they are so tight. I have not had any issues while working out although workout fatigue can and does worsen my tremor. I was kind of flabbergasted at my last appointment that the dr. seemingly doesn't agree with the diagnosis I was given and that I've been blindly seeing him without a diagnosis. I plan to ask him directly at my next appointment why he hesitates to agree with my former doctor and what his diagnosis is. However, given my doctor's position, the dramatic change in my tremor, and the new symptom of dropping things I am getting more concerned. I don't know what this is. My tremor is not a resting tremor so I don't really think it is parkinson's. But my hands, particularly my left, do not function normally and even do things that don't look like essential tremor. Also I have read that ET is uncommon in the legs. What kinds of questions should I be asking him?
  3. Hi, I'm new here. I've been reading a bit for a while, but I have an appointment coming soon with my MDS and have new symptoms. I'm hoping you all could give me some pointers on questions to ask when I see him. My history. I am currently 42 and first noticed my tremor in March 2012. I didn't worry too much about it at the time, and didn't see a neuro about it until 2015 when it had become impossible to hide. At the time, my neurosurgeon for an unrelated condition referred me to an MS neuro who diagnosed me with Essential Tremor after two visits and put me on propranolol. My next appointment was scheduled 6 months later. She left the hospital (a teaching hospital) and I was transferred to an MDS. I have been seeing him for two full years now and feel that he is very thorough and listens well, although he is young he is an assistant professor. At my last appointment I happily informed him that my aunt told me she was also recently diagnosed with ET. He replied, "well that makes me feel more confident in the prior doctor's diagnosis." So it now occurs to me that I have been seeing him for two years and he has never actually diagnosed me himself, but instead following my case closely. I see him every 3 months. My last appointment he suggested I switch to the med combo propranolol and primidone. In the meantime, since 2015 my tremor is getting increasingly worse even with meds. On a good day, the meds help maybe 50%, on a bad day like today they seemingly don't help at all. The tremor is bilateral, but significantly worse in my left leg and hand. Most days I have a hard time typing, texting, and can no longer eat soup/sushi or drink from a cup with one hand in addition to many other things requiring manual dexterity. It is in both hands, both legs, my voice and slightly in my head. About a year ago I developed nystagmus in my eyes that happens randomly when shifting my eyes from one point to another. I can't make it happen in front of the dr, it's completely random. He seemed unconcerned although I did see a neuropthalmologist that also was unable to replicate it and diagnosed me with perfectly healthy eyes. Since my last appointment (Dec 2017) I have begun dropping things. I am slightly ambidextrous so I often do things with my left hand unconsciously even though I am right hand dominant. I have dropped things from my left hand four times, so I guess I need to stop using my left hand to pick stuff up. Three of the instances, my hand jerked and then I dropped the item I was holding. This morning I dropped a fork, no jerk this time. Maybe I hadn't gripped it tightly enough but given the last three episodes I'm paying more attention. I am also noticing a weird kind of numb sensation in my left arm and leg. I am physically active, I do high intensity interval training 3x per week. Maybe it's related, my hips are killing me they are so tight. I have not had any issues while working out although workout fatigue can and does worsen my tremor. I was kind of flabbergasted at my last appointment that the dr. seemingly doesn't agree with the diagnosis I was given and that I've been blindly seeing him without a diagnosis. I plan to ask him directly at my next appointment why he hesitates to agree with my former doctor and what his diagnosis is. However, given my doctor's position, the dramatic change in my tremor, and the new symptom of dropping things I am getting more concerned. I don't know what this is. My tremor is not a resting tremor so I don't really think it is parkinson's. But my hands, particularly my left, do not function normally and even do things that don't look like essential tremor. Also I have read that ET is uncommon in the legs. What kinds of questions should I be asking him?
×