I've been diagnosed with primary orthostatic tremor. Anyone else?

Roseann21
Roseann21 Online Community Member Posts: 7 Listener
edited August 2021 in Rare, invisible, and undiagnosed conditions
I have recently been diagnosed with primary orthostatic tremor and would be interested in talking to others with the same condition. Everything I’ve read so far seems to be so negative and I’m struggling to come to terms with it .

Comments

  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @Roseann21 and welcome to the community. Coming to terms with a new diagnosis can be challenging, it's a different journey for everyone so it's important you take as much time as you need to adjust. Have you received any support from your GP?
  • Roseann21
    Roseann21 Online Community Member Posts: 7 Listener
    Not from my GP who had no idea what my symptoms were, I was referred to a neurologist who diagnosed the condition. I have another appointment at the beginning of October. I have joined a Facebook group but I’ve snoozed the posts because they are mostly negative. I’d like to know if any other people with this condition have more positive experiences as it seems to be quite rare and not much is known about it.
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    I understand that Facebook support groups can be overwhelming sometimes as I have muted them too. Off the top of my head, I can't recall if I've seen the condition mentioned on the community before but we will do all we can to support you :)
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,611 Championing
    Hello and welcome @Roseann21

    Sorry to hear that you're struggling following your new diagnosis, as mentioned above by Ami it can be hard to come to terms with. It can be difficult to adjust but it's important to take your time and seek support and peer advice, it's a shame that the October appointment isn't a little closer. 

    Do you have any support from loved ones? 
  • chiarieds
    chiarieds Online Community Member Posts: 16,760 Championing
    Hi @Roseann21 - & welcome to the community. I've had a look online, &, if you haven't come across these sites, there may be some useful info. I thought the more international one seemed particularly good. Please see:
    Kindly let us know how you find them. :)
  • Roseann21
    Roseann21 Online Community Member Posts: 7 Listener
    Hello Ross, yes I do have support from family and friends, which is great. I think it’s because it’s a rare condition that little is know about although my symptoms are currently not affecting me too badly in my daily life.
  • Roseann21
    Roseann21 Online Community Member Posts: 7 Listener
    Thank you Chiarieds, I have visited the first website but find it quite depressing! I’ll take a look at the international one, I’m waiting for the admins to approve my registration. I’m very grateful to you for finding that, it didn’t come up in my searches.
  • chiarieds
    chiarieds Online Community Member Posts: 16,760 Championing
    Hi @Roseann21 - I hope the international one may be better. I'm a long-retired physio, but have maintained an interest in neurological conditions (just as well as our family is affected by one!), & thought this website was good from what I could see. It seems informative, with both medical articles & real life experiences. I found their surveys of interest, & very well presented with good graphs to illustrate. I don't know what their forum will be like, but, from the aforementioned, I'm hoping it's helpful, & you will also have the support of everyone here too.
    With our neurological condition (Chiari 1 Malformation), I found, & still find, some USA sites way better.....further ahead with research, etc. Hope this one is the same for you. :)
  • Roseann21
    Roseann21 Online Community Member Posts: 7 Listener
    Thank you, I’ve been accepted now so will take a look at the forums. I’ll let you know how I get on ?
  • chiarieds
    chiarieds Online Community Member Posts: 16,760 Championing
    Thank you for your replies @Roseann21 - letting us know how you get on may help other members who join in the future.
  • Roseann21
    Roseann21 Online Community Member Posts: 7 Listener
    Hi Chiarieds, there aren’t many recent posts in any online forums I can find about my condition so at the moment I’m just trying to get on with things until I speak to my consultant again in early October. It’s a bit stressful but I’m trying to be positive whilst having other personal issues going on. I’ll take another look at the international website and see if I can find anything else if use but I must admit I’m finding things a bit lonely ? 
  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    It's understandable you could be feeling a little lonely @Roseann21. I'm sorry to hear that you're going through some other personal problems as well. Do you think speaking to someone, such as a counsellor or therapist, could help you to work through the challenges you're facing and hopefully help you to feel a bit more positive? 
  • Roseann21
    Roseann21 Online Community Member Posts: 7 Listener
    Thank you Tori, I’m going to contact my GP.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,464 Championing
    I think that's a good idea @Roseann21 :) 

    As for feeling lonely, I'm sorry that you haven't yet been able to connect with other people with a primary orthostatic tremor in a positive way. Have you considered joining any social groups more generally? This could be remotely if you'd prefer. Do you have any specific interests or hobbies? 
  • chiarieds
    chiarieds Online Community Member Posts: 16,760 Championing
    Hi again @Roseann21 - I'm sorry you can't find many recent posts in the online forums for your condition, & that it's making you feel lonely. As well as talking to your GP, perhaps you may also learn more from your consultant in October, & you have all of us here willing to chat. Come & try our virtual 'Coffee lounge' where we chat about many & varied topics, & also have some word games to join in with. You can find a link to this at the top of this page. :)
  • lin0804
    lin0804 Online Community Member Posts: 5 Listener
    Hi Roseann21 
    I also have Orthostatic tremor diagnosed in 2018 after 10 years of symptoms, hope you are ok and if you want to chat about this rare condition I'm here. 
    It is a difficult condition but there are ways I have learnt to cope with it. It's easier when you have been diagnosed, I was so pleased when I finally had my diagnosis ??
  • lin0804
    lin0804 Online Community Member Posts: 5 Listener
    Hi @Roseann21
    Hope you are ok and if you want to chat about orthostatic tremor,   I have had the condition for over 10 years, your not on your own? and it would be great if you got back in touch. 

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