Diagnosed

[linzi]

Hi all

I have just got back from the hospital folowing an EMG test and I have been told that I have POT. The Nurologist was so excited he wasn't really communicating with me and sent for all of the registras in the area. He kept asking me to stand and sayingto us all 'isn't this amazing'? To which I replied 'oh yeah marvellous!' He has insisted that I give him a contact number and has asked if I would be prepared to come back for some more tests. My mum then asked him what it was that he thought I had, as he hadn't yet told us anything! He then infomed us that it was POT. I felt like a bit of a film star for a while and I think it's encouraging that he wants to research it and teach the rest of his team about it. Just thought I'd let you know and ask if I could join your gang!!

[stella]

Hi
welcome to the site
what were your symptoms?
would like to hear more from you
candyse

[gloria]

Linzi : Welcome to the gang but sorry this means that you too have this miserable problem. Nonetheless, you seem to have a wonderful sense of humor as you reported your neurologist's reaction to you. You were lucky to find a doctor that recognized your symptoms. And yes, you do have celebrity status at this point in time because we are still considered "rare birds". Enjoy the attention, we deserve it. I'm very please to see the increase in our discovery especially in the UK and Australia. I believe that we can thank impart to the efforts of (NTF) The National Tremor Foundation in London for helping to spread awareness through the medical community.
How long have you been symptomatic? Also just wanted you to know that you have a lot of new friends who understand this disorder extremely well. Please keep in touch, Your OT Partner, Gloria

[linzi]

Hi Candyse & Gloria

My symptoms started about 18 months ago. I was aware of a shaky feeling when trying to stand unsupported. I sing in a band at our church and found it really difficult to stand and sing, and this feeling was increased 10 fold when nervous. I once remember forcing myself to stand for a considerable amount of time and my whole body reacted to it. The next day I felt like I had had a massive work out at the gym without a warm up! every muscle in my body ached a lot!!
During medical tests doctors have noticed I have very brisk reflexes espescially in my knees, does anyone else suffer from this.

I do remember an incident about 4 years ago when I was a bridesmaid, I noticed I was shaking more than the bride on arrival at the altar! and found it really difficult to stand still.

I have been contaced by the hospital and they would like me to attend a seminar on the 21st July, where they will be talking about OT to about 30 consultants, I have been asked if I would answer questions regarding the symptoms etc. I am a little nervous but think it would be good to have as many consultants out there aware of this bizzare illness!

Thanks for your warm welcome and Gloria thank you for setting up this site it is a real support!

Linzi x

[Lynda]

Hi Linzi

Great to hear of a fellow OT sufferer in the UK - not that I'd wish this upon anybody! I live in West Sussex on the coast - so not so far away from you!

You are very fortunate(!) that you have been diagnosed after only 18 months. I had POT undiagnosed for 15 years before I discovered Gloria's website and found out for myself what it was all about. I then had the diagnosis confirmed by a neurologist in Worthing hospital - but he didn't seem particularly interested in my case! I should make the most of the attention you're getting from the doctors and help them all you can to learn more.

Funnily enough, the first time I recall experiencing the tremor was standing up in front of everyone at church, too. The condition seems to be made so much worse by nerves or stress. I haven't really suffered from depression (although I know a lot of people with OT do) but I did suffer anxiety and panic attacks in the early years of the condition. You may find that just being aware now of what is wrong (and even just having a name for it!) will help you to overcome your depressive spells. I know it really helped me to cope and to overcome any anxiety.

Anyway enough for now. Keep in touch with everyone. That helps too. Let us know how you get on on 21 July.

Best wishes

Lynda

PS My doctor commented on my 'violent' reflexes too!

[stella]

HI Linzi
Was wondering if your Dr. percribed and meds for you
I did have some depression problems some years ago.
I also am a nervous person.
I now seem to be finding it very hard to walk at all.
Keep us posted on what if anything you find out about this crazy
condition.
take care
candyse

[Chris]

Hi Linzi
Great to hear of your experiences....hang on to that Doctor! It is nice to hear that he is interested in you...my doctor just smiles and says he is at a loss what to do with me. We have tried quite a few meds and nothing really seems to work for me unless I take huge doses and then I have another whole set of problems.
I too noticed the start of my problem many years ago when I had to read at my Brother's wedding at the front of the Church....I just put it down to nerves but was surprised at how much my legs shook. I slowly noticed things getting worse especially in my job which entailed standing most of the day. I am now retired and limit my standing but if I overdo it such as shopping a lot or gardening I really pay for it the next day. My legs too indeed feel like I have had an intensive workout and really ache.
I have never really suffer from depression but do have a few down days especially when I hurt. I sometimes feel myself having a panic attack if I have to stand a lot or can't find somewhere to sit down. Most of the time I map out what I have to do as to avoid as much stress as possible.
Please keep us posted....it is really great to hear about your experiences and maybe it will help us as well.
Take care,
Chris

[linzi]

Hello all thanks for your encouraging emails. I have not yet been prescribed any meds for the POT and feel a litle reluctant to try any.
What are the side effects of the meds prescribed to date?

Linzi