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

islander11
Posts: 1
Joined: Sun Jun 26, 2016 10:05 am

Re: New to the forum? post a quick introduction

Post by islander11 »

cleancoal wrote:My Handle is Cleancoal, real name Jack.

I was diagnosed as having ALS seven years ago. Having found this web site, my symtoms seem to resemble orthostatic tremors since I have haven't progressed beyond leg tremors. Reseaarching the Internet, I found the drug naltrexone (low dose), LDN, is recommended helpfull for ALS, Parkinson's, fibromyalgia, MS and other neurodegenerative diseases whose etiology is umknown. I tried Mirapex and Neurontin when first diagnosed seven years ago, but these drugs made me sick in the morning. Has anyone experienced the use of low dose naltrexone (LDN) for relief of orthostatic tremors. I have an appointment with my neurologist the middle of December to request a prescription to try this drug. Any information would be helpful.
I am new to the forum, diagnosed last week, and searched the site for treatment results with low dose naltrexone, which I started two days ago. I notice this post is old (2008), and if you're still on and tried this medication, I'd love to hear your experience. Thanks.
Patricia
Posts: 1
Joined: Sun Jun 26, 2016 2:12 am

Re: New to the forum? post a quick introduction

Post by Patricia »

gloria wrote: Introductions and Greetings:

There have been quite a few new people registering and it might be nice to hear from you in terms of a quick introduction. It can be as much or as little information as you would like. And for the veterans of this site this may be a good time to re-introduce yourself.

best regards,

Gloria
:wink:
So, is this where I put the introduction?

Female. 67. Newfoundland, Canada. Had symptoms for 5 years. Shakiness. Inability to stand still. Problems with showering, brushing teeth, washing dishes, shopping, etc.etc. Can not stand in lineups. Can drive and sit down! Told many foolish things by MD's. Depression, all in my mind, maybe vascular dementia, fibromyalgia, chronic pain syndrome, ...and find a new doctor! Best.....but you did manage to put make-up on :lol: Eventually went to a movement specialist in London, ON. They were pretty sure it was OT. But go back to NL and get an EMG.
10 months later I did get to see a neurologist here and had the EMG....tremors in my legs measured at 17 MHz . Take clonazapam, which I had been taking for over a year already....and beta blockers, which I have been taking for over20 years. Have very high bp. Meds are not helping. Am dismayed by how collapsed my world has become! No one here really to talk to about any of this. Have severe arthritis in my knees so walking has become almost impossible. Pain. Very difficult to explain any of this to anyone. Is there really no solution to all of this?

Patricia
gardenlily
Posts: 18
Joined: Tue Apr 12, 2016 12:51 pm

Re: New to the forum? post a quick introduction

Post by gardenlily »

Hi, Patricia,
I live around Kingston, Ontario, and I, too went over 5 years without a proper diagnosis and lots of questions and no answers from residents! :cry:
However, I was fortunate enough to be put in contact with a young neurologist in Toronto who diagnosed the problem and began treatment for me. I take Clonazapam and was taking an increasing dosage but had to go back to just 1.0mg a day because it was depressing me too badly.
I see the doctor again in July to see how things are going and discuss the situation. Not sure there really is a cure but perhaps there is something that will moderate the shakiness( I hope). Everyone seems to have different and not-so-different ways of coping with OT, and I hope you are able to get some relief, even if a little each day! :)
Good luck to you in your OT journey.

Gardenlily
Ann Dodd
Posts: 14
Joined: Sun Jun 28, 2009 12:27 am

Re: New to the forum? post a quick introduction

Post by Ann Dodd »

Ann Dodd: Hi Everyone, I have not been on this website for a couple of years. I have had numerous conversations with Gloria as I have had DBS for Primary Gait Ataxia. The Op is still working, but not as strongly as it used to. I have had OT for about 12 years and the best thing that happened in my life was going to our OT Conference organized by Sue Boyd in Sydney Australia. For the first time in my life I met other people with OT. Since then we have forged a band of friends that are always there for us. Di,Lynette,Jenn, Sue,Nicolla the one who really touched my heart as she was so young & with young children. She felt the same way & she organized our Australian Website- Primary Othostatic Tremor. Everyone is welcome to join &it is like my family.I am travelling well for 72 & have good & bad days. Mostly good as I am a positive thinker & wish you all well. Hope you are all keeping as fit & as well as possible, Annxx
Paul Christie
Posts: 3
Joined: Mon Jun 27, 2016 5:47 am

Re: New to the forum? post a quick introduction

Post by Paul Christie »

Hi,
My name is Paul I live in Raglan New Zealand, and I was diagnosed with OT.
in October. I first noticed mild symptoms about two years ago while waiting in queue,s. I saw my GP and after numerous tests and examinations he couldn't find anything wrong with me. He suggested I should pay to see a neurologist as the public system has a big waiting list.The neurologist thought he new what the problem was but wanted me to have a MRI to rule a few things out. After nothing came up on the MRI he gleefully informed me he thought I had OT. He gave me the test that measures the tremors, and after dancing round the surgery he gave me a definitive diagnoses.
I asked him why he was so excited and he told me he new of this desease and had studied it but never had come across it,,,,.
He put me on Clonasipan with terrible results. I was put on an extremely low dose but I just felt stoned, and fuzzy headed all the time. It seems I have a very low freshhold to medicines.
I have just undergone some Botox injections only a week ago, so the jury is still out regarding any results.
I am 51 have a wife and two kids 10 and 13, I own a building company and life was good until this hideous affliction came into my life.I can no longer perform any tasks without sitting. I am constantly looking for places to lean on or sit. I also have constant aching of my legs. I am feeling pretty low about the whole thing, I just can't believe how such a simple thing of standing still can be so debilitating when you can't do it.
Any suggestions to make life easier would be truly appreciated.
molly
Posts: 11
Joined: Wed Mar 02, 2016 8:08 pm

Re: New to the forum? post a quick introduction

Post by molly »

I am exactly the same I am not on meds now seeing another neurologist end of July
It is the worst thing and I am not going to give in
Travelling is the worst in airport queues
I am in Sydney Australia
I read about those injections would be
Interested to know how it went for u
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 »

Paul: Welcome to the website : Here you will find many who are working thru life with this life changing disorder and some of their coping skills they have used. I too was given Clonazepan as my first med and had the same results. I later changed to Gabapentin which helped in the earlier stages of OT until now the advanced stages of OT at my age. It was interesting that that your neurologist knew that giving you the MRI would confirm your OT diagnosis...........it is an EMG of your leg muscles that confirms OT. Many have lived with OT for years trying to find the proper diagnosis or were mis-diagnosed. Please feel free to ask questions about your life with OT..... , you will find many here on the site to help you. Gloria
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! Ann Dodd: How good it was to hear from you again and your update on your condition. The additional info on the DBS you had for your Primary Gait Ataxia I have been wondering about and how you are doing with your OT. It has been awhile and I'm very happy you and our "down-under" friends have your own get-together-group, this is still the best medicine we have just connecting with others dealing with the same ban. All of you are our special Australia OT friends and it is good to get postings from all of you too on how you are doing. Thinking back in time do you ever think of anything that might have caused the onset of your OT. All the best, Gloria
kellytherev
Posts: 7
Joined: Sat Feb 13, 2016 8:55 pm

Re: New to the forum? post a quick introduction

Post by kellytherev »

I am 39, and I was diagnosed with Orthostatic Tremor 16 months ago. I suspect that I've had the tremor for more than 5 years, but it took a while to figure out since it presented at the same time as a yoga injury that resulted in SI joint dysfunction. I have exhausted the list of medications that my neurologist recommended, and I will soon head to the Mayo Clinic for tests. I am an Episcopal priest. In January, I began using a cane, and I sit on stools to lead worship.

I'm grateful for this site.
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 Kelly: I was wondering if your neurologists thought your yoga injury might have been the cause of your onset of OT? Good to hear that you are going to the Mayo Clinic for testing........ please let us know the results of your visit there. All the best, Gloria

PS: Did either or both of the neurologists give you an EMG ?
kellytherev
Posts: 7
Joined: Sat Feb 13, 2016 8:55 pm

Re: New to the forum? post a quick introduction

Post by kellytherev »

Thanks for the welcome, Gloria.

I've had 3 docs suspect that there were two things going on at once, the SI injury and OT. I suspect (along with the DO, MD in OH, and my new MD in KY) that the SI injury wouldn't heal due to the instability caused by the tremor. Nobody has said that the yoga injury might have induced the tremor.

I had a EMG about a month ago. The procedure only tested the muscles in my ankle.

My appointment at Mayo is at the end of September.
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 Kelly, I found your post very interesting, I too sustained a back injury prior to my diagnosis of OT, I was told I had 'put out' my sacaroliac joint is this the S1 joint you refer to? .... I later had been sent for an MRI back scan which obviously didnt show up the instability i still have in this area when sitting walking and other activity which generates pain :cry: so obviously isnt taken seriously and very frustrating. Although I have no doubt at all I have OT as my symptoms of that sits with that but i have often wondered is there any connection like yourself ? jump to my posts to give you a clearer insight of my journey and I truly hope you receive the help you need to find relief take care DEE 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 »

Paul: I was wondering if you noticed any inprovement from the botox? Many years ago at the beginning of the website a few OT people reported they were given botox however they never reported any positive responses from it nor have I heard of any current use of botox lately ............ just wondering if you have noticed any relief of your OT tremors???????? I know that you are new to OT and it does upset our normal way of life physically but it could be worst as a life threating disorder. As time goes on you will learn coping skills that will help continue your everyday but in a different manner. It is a good you have a neurologist who recognized OT plus here on the website you have many OT friends helping each other. Keep us posted how you are doing, Gloria
RJFSR
Posts: 2
Joined: Mon Jul 11, 2016 4:34 pm

Re: New to the forum? post a quick introduction

Post by RJFSR »

Hello all... Greetings!
My name is Richard. I am 71, and have been diagnosed with OT since 2000. I retired from USAF also in 2000 at 55, but my story goes back a few years earlier.
In the late '90's, I noticed strange things started to happen; standing in formation, which is a normal happening for military personnel, my butt would start occilating. Not fast, like a flutter. VERY uncomfortable when you can't move. I was a Heavy Mobile Equipment tech. I had no trouble climbing all over Fire Equipment, and other very big stuff- but I couldn't stand still!
It got progressively worse, and came to a head in a very embarrassing time. I was in an Honor Guard ceremony for a good friend that had passed prematurely, and I was asked by his wife to be there. At the church, I knew I was in trouble. Standing at attention, I couldn't hold still. At the cemetery, tasked with the folding of the flag over the coffin- my legs were moving so much my knees were bending. I thought I was going to collapse. This in front of maybe five hundred people. Bad memories...
So, after retiring, I saw a neurologist. He call in an associate because he thought my condition was rather rare. The leg part, that is. He said I had what Katherine Hepburn had, but she had it in her head. I didn't use him/them for long...

After seeing a "motion disorder" specialist, getting a new neurologist, and being on Primidone for 15 years, I am steadily getting to a point where I do Disney World from a wheelchair. No way can I stand on lines. I had to give up fly fishing; kept falling in the water. Oh, yeah, I'm dizzy because of a bum ear. Bad ear, bad legs, and your brain gets feedback from them along with your eyes to keep you vertical. I use a cane a lot. It helps if my legs feel weak, plus I can lean into the cane if I have to stand still.
Anyway, I have an appointment with my neurologist at the end of July. I don't think the Primidone is doing anything anymore. I'll see what comes next...

I'm looking forward to perusing this forum. And hopefully, pick up some new facts and sharing some of my findings.
Cordially,
Richard
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 »

Richard: I welcome you and thank-you for your very comprehensive story of your life with OT that started while you were still in the USAF, restricted at times and places with OT's physically and mentally draining happenings while still unknown to you. I understand the stress that you were living without a name but now unfortunately all of us with OT live with continuing stress but soften it with coping skills. Please keep us posted........
All the best , Gloria
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