New to the forum? post a quick introduction

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Hi Laura

Below is link to the OT Facebook page, the first post is the RareDiseaseDay graphic. Click "share" on the post and it should show up on your FB page.

https://www.facebook.com/orthostatictremor
Laura1951
Posts: 6
Joined: Mon Feb 01, 2016 5:15 pm
Location: Ann Arbor MI

Re: New to the forum? post a quick introduction

Post by Laura1951 »

I just figured it out using my smart phone.
Snow goose
Posts: 3
Joined: Tue Jan 12, 2016 12:24 pm
Location: England

Re: New to the forum? post a quick introduction

Post by Snow goose »

Hi everyone
Gutted. The fourth doctor I have seen on first referral . Been passed along all the way . Last letter said " you have rare tremor disorder re your recent muscle and nerves tests ." . The doctor doing the EMGs was sure too.
The letter stated that one of the team would discuss treatment with me .
I am still reeling from appt. yet again a new doctor .
very nervous ..barked orders to neuro tests ....I have other health issues .....and in the end told you are discharged from us . The tremors were too low. Not what I have read online.,Two docs think I have it.,
Yes ...late afternoon . When I was at my best and struggling to hold it together.
Think he saw a bit overweight lady with psychological history of anxiety . I know my symptoms are OT .
I realise the meds see awful things in neuro. But felt humiliated and judged. Wept when I got home.,
Discharged .

So going to stick with you guys .
Snowgoose .x
Laura1951
Posts: 6
Joined: Mon Feb 01, 2016 5:15 pm
Location: Ann Arbor MI

Re: New to the forum? post a quick introduction

Post by Laura1951 »

Dear snowgoose, please continue to share through this forum, and gather strength from others who have had similar experiences. We have each other to turn to, and I know I am not the only other overweight older woman with anxiety who shares OT with you. I am so sorry that we all have to have these kinds of experiences. Believe in yourself and turn to us for support and for coping techniques/ideas.
molly
Posts: 11
Joined: Wed Mar 02, 2016 8:08 pm

Re: New to the forum? post a quick introduction

Post by molly »

Hi
My name is Eunice. I was diagnosed with OT late in 2015 (so recently). I had issues standing for about 6 years prior to obtaining my diagnosis. As I had a previous knee injury I was told it was that was causing the unable to stand problem.
I was very lucky that I was referred to a top specialist in Sydney. I must say I was nervous on my first visit to him but I could not wish for a better doctor.
Unfortunately no medicine seems to work at this stage. I have been taking Gabapentin since late last year on a very high dose. I have asked the specialist if I can wean myself off as I am experiencing a bit of a light head and other things that could be related to the medication.
I was wondering if alternate medicine would assist this is something I will discuss with the specialist.
I went OS for 5 weeks recently I can tell you that was a experience in the airports. Eventually they gave me a wheelchair.
I will be interested to read what others have to say.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Hello Eunice: Welcome as a new OT FORUM member and thanks for a very good posting of your current stage with OT. You were lucky to find a very informed doctor. I agree I would work with your doctor about medication because there is no medication that will stop our symptoms completely. Life with OT is very challenging but you will learn coping skills along the way. Also If you are traveling it is wise to ask for a wheelchair as soon as you reach the airport they are generally very accommodating and help you thru the lines.

Will look forward to your future postings, Gloria
BobSweden
Posts: 4
Joined: Tue Feb 23, 2016 5:57 pm
Location: Sweden

Re: New to the forum? post a quick introduction

Post by BobSweden »

Thank you Gloria for just beeing there !

We'll try to take your advise about a Contact here in Sweden and see what it leads to. Once in i while I find myself
questioning my wife just to figure out if the problems are worsening or spreading just to in a way certainly not forget it but also facts for the record if we run into a neurologist with a true interest OT.

Let me give you a Little something that seems odd to me: A year ago I recogniced that my wife on top of the legs and hands had a head tremor, she litteraly was shaking her head. When I told her what I saw she did'nt belive me because she was unable to notice it herself !! She as a matter of fact was angry at me, making the remark. This headshaking has now since a couple of month totally disappeared.

Alongside the balance problems which could occur when standing without something to hold on to she has NO balance problems when Walking och in other situations. Suppose this shows the many faces of OT.

Regards
Bob
jitterbug2
Posts: 16
Joined: Fri Sep 25, 2015 11:24 am

Re: New to the forum? post a quick introduction

Post by jitterbug2 »

Gloria, Jeff, Beth,
Thank you all for your commitment and compassion. Now that we have all met each other and have put faces to names can you tell us how we can send private messages to individual members? If we post our private email addresses on the public website that could be open to intrusion. If we post particular messages that are pertinent only to a few then that tends to clutter up the website and might discourage members from browsing.
Also, how can I combine my posts from previous registration? I had signed up in 2009 as Jitterbug but forgot my password and re-registered as jitterbug2. Am I missing something in the instructions? That is not unimaginable! :lol:
All the best
John
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

Hi John

After you log into the forum as you have already done you will see 2 icons (private message and email) under the names of the people that have posted a message:

Image

You can also look within the member directory that is accessed from the black bar above, click on "MEMBERS". Then find the person that you are looking for and you will have contact information if that individual allows it.

Link to Member list

As for the joining of 2 registrations, unfortunately this can't be done because the system keeps registrations separate, sorry.

Jeff
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: New to the forum? post a quick introduction

Post by DEEmou »

HI, my name is DEE, I have recently just been diagnosed with O.T. I live in Northern Ireland. U.K. I am very keen to be in touch with others from the U.K with the same condition.It would be nice to connect with others for some support as I
know many don't understand this :? initially I came out of work last May after sustaining a back injury however within one week I had a really bad tremor in my legs, after seeing my G.P he also noticed a tremor in my neck (I was'nt aware of this) and forwarded me to a neurologist. several months later and before my diagnosis things became apparent that I had no improvement, I suffer from extreme exhaustion due to trying too hard to stay 'normal' as I've always been a busy person, awful back and leg pain even my joints are sore. My Neurologist notes I have gait problems, slow walk and essential tremor in my upper and lower limbs, also I have noticed but fail to mention to him that my legs sometimes jerk suddenly whilst sitting or when I'm in bed. When at rest I constantly feel pulsating in my feet,up my legs and occasionally my trunk and arms, my legs have a level of numbness in the calves and feel very cold? is this all part of O.T? My G.P has me on Gabapentin Im half way to my dose of 3600mg per day,other than reducing my severe headaches no other improvement as yet :?
I feel like a moan but my symptoms are very real, I never complain and try to just carry on and even haven't told many of my condition as yet, it is a struggle but I do it with dignity and smile :) I avoid situations that make my symptoms worse, I do hope to return to work as a S.N classroom assistant..not sure how I will get on but really want to try as I love my job so so much! ANY ADVICE would be much appreciated Thank-You DEE :)
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: New to the forum? post a quick introduction

Post by gloria »

Hello Dee: I'm sorry to hear of your situation. You are suffering with a number of symptoms that extend beyond the normal diagnosis of OT. [ awful back and leg pain even my joints are sore. My Neurologist notes I have gait problems, slow walk and essential tremor in my upper and lower limbs, also I have noticed but fail to mention to him that my legs sometimes jerk suddenly whilst sitting or when I'm in bed. When at rest I constantly feel pulsating in my feet,up my legs and occasionally my trunk and arms, my legs have a level of numbness in the calves and feel very cold? is this all part of O.T? ] No, it is not the norm and perhaps another visit with your neurologist and inform him of your additional symptoms to see if they might be a result of your back injury along with your OT diagnosis.
I hope too that if there are other OT people living near Northern Ireland will make contact and help you thru your situation. PLEASE keep us posted, Gloria
molly
Posts: 11
Joined: Wed Mar 02, 2016 8:08 pm

Re: New to the forum? post a quick introduction

Post by molly »

I live in Australia and was diagnosed with or just before xmas
I had a accident about 8 years ago and I thought it was from that but the neulogist diagnosed ot
I can't offer u much help but I understand your post
We went OS at xmas which I have done many times but this trip was hard especially at the airports
I don't want to give into it and get very tied
The closest thing to Ireland for me was a lovely visit to dublin and I own a Irish setter
Take care and I hope u get back to work
Soon
admin
Site Admin
Posts: 544
Joined: Fri Jan 16, 2004 5:25 pm

Re: New to the forum? post a quick introduction

Post by admin »

.
From the Nebraska Medicine blog and Dr Diego Torres-Russotto, MD -
Orthostatic Tremor: Imagine Being Able to Walk, But Not Stand

Link To Article on OT by Dr Torres-Russotto
Sara
Posts: 5
Joined: Tue Sep 01, 2015 1:53 am
Location: Queensland Australia

Re: New to the forum? post a quick introduction

Post by Sara »

Hi Dee
My name is Sara and I live in Australia. I was very interested to read your post and the description of some of your symptoms as I also suffer with involuntary muscle jerks in my legs, upper arms and neck. In 2013 I was referred to a Movement Disorder Neurologist and was diagnosed with Myoclonnus Dystonia; however this diagnosis didn't explain all of my symptoms such as terrible fatigue and shaky legs. Finally in 2015 I was also diagnosed with OT and ET in my arms and legs. As for some of the other symptoms you describe, on the days that I over do things I also suffer from muscle and joint pain and occasional back pain and there are times when I feel a strange sensation in my legs, akin to an electrical buzz (sounds strange I know). I hope this helps, knowing that there are others who understand and care.
DEEmou
Posts: 21
Joined: Thu Mar 31, 2016 2:53 pm
Location: Northern Ireland

Re: New to the forum? post a quick introduction

Post by DEEmou »

THANK-YOU Sara, for taking the time to post... gosh I also have the buzzing in my legs that you describe..honestly the amount of times when I have been out (not as often these days) and reached into my handbag because I thought my mobile was ringing!! (as I have it on vibrate) only to discover that it wasn't..this was also another thing I failed to mention my neurologist as I thought he might think I was crazy :lol: also happens when I'm relaxing.
can I ask? are you still able to manage..i.e with work and daily chores? I'm a very independent person and was always on the go...working,housework, gardening etc etc but do now have a gardener to do the bigger and more manual jobs, I love pottering about the garden and still do attend my containers etc as with housework I have invested in a cordless vac, lightweight micro mop, and only do a little everyday to maintain the house, the most frustrating part is having to plan well ahead as a couple of hours in the mall , an evening meal out etc leaves me so exhausted now..really dont know how I am going to cope when I return to my job as a special needs classroom assistant, I truly love working with these children and it will shatter my dreams if I cannot manage it, it is a very intense physical and demanding job
also a thing I have found frustrating is people stating I look well n therefore cannot 'understand ' why I have been out of work :cry: besides the fact I haven't made it public knowledge to reveal what is really 'wrong' with me..
however....a good sense of humour and being positive keep me going I hope that continues :lol: I hope to hear from you again and you are keeping well, best wishes DEE x
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