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

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
I am Snowgoose who lives in the North of England . Age 61 . So relieved to find this forum with its support and wisdom . Thank you Gloria .
Recently diagnosed after many red herrings with back injury and chest problems . MRIs and and at last a perceptive doctor in neuro physiology who brought me back for further more specialised EMG .
Next week I see neurologist re treatment so will update then .

I can almost pinpoint the day this tremor started because I was so shocked at how unfit I had become without it me noticing !! Love gardening and on my knees pottering and weeding . Could not get up .
Then I would jump up as usual on a stool to clean windows say ...and fall.. Getting up from chair became so difficult. Another fall when going downstairs . My mind went into overdrive . Blimey you need to up the exercise lady . Started to make excuses for not walking the dog as far . Back pain and ovewhelming fatigue .
Then the mind games start . Oh this is the old black dog of depression revisiting . You are just unfit and very lazy .

But the legs get worse and I tell my son one day that they feel as if I had been hiking for days uphill. And the nasty beast progresses .
Now I can hardly stand at all without holding on to anyone or anything . Mornings are horrid . Anyone else find the same ?
The tremor is in my torso and arms as well as the tottery legs .My arms and legs spasm at night . Anyone else ?
I ask this because I had optic neuritis 30 year ago . An MS flag . I do wonder if there is a link .
So yes there is a trigger for me I think . And stress I believe also when relentless cortisol and adrenaline is flooding your body .

So lovely to meet you all . Promise not to be a moaner next time I write . Some humour honest in this illness we share .
Snow goose xx
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 »

Oh! Snow Goose: What a great sense of humor INDEED! and understandably we don't experience that very often here on the website with the presentations of this bummer we live with. However, thank-you and will be very interested in your sharing news of your upcoming meeting with your neurologist, Gloria
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 snow Goose: with this disease there seems to be very few general patterns about how, when, why, how does it progress and nothing and no one other than this forum to turn to. Recently my standing leg tremors started when I wasn't standing, although after days of total rest they have calmed down. Fatigue is always present. I do have essential tremor in my hands too but those have been for 50 years and they run in my dads family. From my experience, you are facing a monumental decision to use drugs to help reduce the tremors. Some of us have been helped by them, others harmed by their side effects. Educate yourself and think carefully when presented with these choices. I will be praying for you, as I do for all of us each day.
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 »

Thank you so much for lovely welcome . Such a relief to have found you .
Seeing neurologist next Monday and will update then . Do I post here or on another board ? X
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 »

Snow Goose: Will be anxious to hear how you visit with a neurologist goes and yes you can post it here on this same area of the Forum.......Cheers, Gloria
trouble
Posts: 1
Joined: Thu Feb 18, 2016 2:20 pm

Re: New to the forum? post a quick introduction

Post by trouble »

Hi! I'm from BC, Canada and was diagnosed with OT almost a year ago. I'm 61 but first noticed problems when I was about 54. I tried to hide it and didn't even tell my family or friends until it got so bad I couldn't hide it any longer. I retired early from my job because for the last 33 years of my 42 year career I have had to stand for long periods of time and I could no longer cope. I had a hard time getting my family doctor to believe there was really something wrong although he did send me for MRI's and blood tests but it took my husband coming with me to make him understand how bad things were. He referred me to a neurologist who referred me to a more specialized neurologist and he diagnosed me after listening to my symptoms and listening to the tremors with a stethescope. He prescribed Clonazepam which at first seemed to be helping, I was only taking 2mg per day but after about five months I started to get depressed, very emotional and would easily sleep ten hours at night and not feel rested in the morning and the drug didn't seem to be helping as much anymore. I have decided to wean myself off of the Clonazepam because it just doesn't seem worth the side effects. I have decided to try taking Rhodiola which is a herb that helps with stress and mental fatigue and epsom salt baths every morning. My son wants me to go to a Naturopath...has anyone had any success with that route?

My mother suffered from Dystonia and I had an uncle who had Parkinsons. I'm really worried about becoming a burden to my family. I've always been very healthy and independent so this is hard to accept. I'm just thankful I can go for long walks especially on days like today when my symptoms seem worse. Although I am sitting I am struggling to type because my arms seem to be tremoring but tomorrow I might feel a lot better (fingers crossed)
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 »

Hi! trouble: As time goes by "like you" most OT'ers keep trying ways to help cope and some do ease our OT and some do not. However it is always good to keep on trying because you might find something that works a bit that you can share. We have OT people that have gone more natural path's that you will find as you keep reading thru the website. You will find too many coping skills that have help us go thru life with OT. We learn from each other to find ways to maintain our independence....... It is called " fighting back at OT " and we have a large group us who are trying that path. Keep us posted, Gloria
bren
Posts: 2
Joined: Sat Feb 20, 2016 8:12 pm
Location: Collinsville, Mississippi (near Meridian)

Re: New to the forum? post a quick introduction

Post by bren »

This is a first post for me. Finding this website, then reading Gloria's writings plus posts from others, has almost overwhelmed me with gratitude. I have lived 67 years trying to keep secrets about how "messed up" I really was, only to learn there are others who have lived in the isolating world of a condition that seemed to have no name, and no explanation of why I could walk and run but not stand still.

I have an appointment with my neurologist tomorrow, and plan to ask some questions about orthostatic tremor. In 2005, a rare disorder called palatal myoclonus (or tremor) was diagnosed, and it extends to more than just the hard and soft palates. I can somehow control the facial movements to avoid embarrassment, but with the price of other muscles having to contract. Pain has been a daily companion for as long as I can remember. My muscles oscillate, head to toe. It's readily apparent, though, only in the mouth. I believe it might have begun in the feet and legs, having been born with trouble. I understand that I could run, as a small child, but would fall over if I tried to stand in one place; and standing has been difficult ever since. I try to take gabapentin, but the reaction is extreme weakness, so I anticipate another prescription for another med tomorrow.
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 »

bren: I'm so sorry for you to have lived a life of so much misery,pain and islolation. PLEASE, let us know what your neurologist has to say tomorrow and if ( he or she ) thinks you have OT you will probably be given an EMG to help diagnosis OT. 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 »

Hello all OT patients and relatives round the World !!
Me and my wife lives in Sweden near Göteborg. My wife was at last diagnosed some 2-3 years ago after a lot of second, third and fourth opinions from different neurologists. I thank Internet beacuse I googled up and down hundreds of pages and sights and suddendly i found some facts worth to take to neurologist. Once on the track, however knowing very Little of OT, the n could listen with the stetoscop and hear the "noice" from the muscles.
Some of the first and second line Medicals where prescribed but no response whatsoever. My wife is 65 and retired a Little while ago from a halftime job as a nurse (!!) We don't know any other patients i Sweden or Scandinavia and
no professionals around here is willing to make the slightest effort to anything else but rest in the fact that OT is an incurable and sometimes progressing illness and that is that. At least one expects that neurologists once having a rare diceace on the table could scan the latest articles and the front facts of OT. Sadly the wheelchair is in sight in Due time and meanwhile now and then we living in or near OT should be a comfort to each other whenever possible
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 »

Welcome to the website Bob and your wife, sorry that you are finding it hard to get better attention and help from the medical system for your wife. If you do a lot of reading of all areas of the site plus the postings of other registered members of the website I believed you will be better informed of OT. Also we do have a person from Sweden registered on the website by the name of Golfnut. Search out her postings to read and you also can send her a private message thru the website. Hope this helps, Gloria
bren
Posts: 2
Joined: Sat Feb 20, 2016 8:12 pm
Location: Collinsville, Mississippi (near Meridian)

Re: New to the forum? post a quick introduction

Post by bren »

I saw my neurologist yesterday and she said I must have a nerve conduction study on legs and feet before she diagnose OT. It will be done with needles, which I don't mind, but having had one done on my upper body resulted in spasms, and part of my left deltoid is still in a big knot, years afterward. I read more on this website and I plan to see what I can find out about a "surface" EMG, then ask her questions. I'm still on gabapentin, but she did prescribe smaller units and did encourage me to experiment to find just how much I can take without too much muscle weakening. Thanks for your interest.
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 »

Bren: The best muscle strenghtening is walking at a good pace everyday if possible. 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 »

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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 am trying to find a way to post the Rare Disorder Day post from here onto my Facebook page, and I'm having no success. Any tricks/ideas?
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