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

Roseann21
Posts: 1
Joined: Thu Aug 12, 2021 2:58 pm

Re: New to the forum? post a quick introduction

Post by Roseann21 »

Hello, I’m Rose and I’m from North Yorkshire in the UK. I’ve been having problems with shakiness in my legs for a long time, I can’t even tell you how long as it’s sort of crept up on me! I know it’s many months, probably years as it’s got slowly worse. I’m 63 and very active, slim, still work full time as a veterinary nurse and don’t have any other conditions that I know of although I suspect I am somewhat arthritic as I have joint pain and it runs in the family. I also get a lot of palpitations but have had a 24 hour ecg which came back normal, so maybe that’s just stress. I can’t stand still for more than about 20 seconds before I feel like my legs are going to give way from under me but I can walk a long way. However if I overdo it I do get exhausted so I have to be careful. I can manage to do everything I need to by leaning on whatever happens to be to hand! Walls, tables, my son, random strangers (only joking) but I’m divorced so don’t have a husband or partner to assist me. My son is 19 - I was a late starter - so he’s still at home at the moment and is a great help, although I really don’t feel like I need much help currently. I was diagnosed with primary orthostatic tremor a few weeks ago and my consultant actually said he doesn’t think I’ll get much worse, which goes against everything I’ve read elsewhere. He’s prescribed clonazepam which I haven’t taken because I think the effects will outweigh the potential benefits, and he told me to take it on a day I’m not doing anything, there are no such days! I’m speaking to my consultant again on the 4th of October and will have lots of questions now I’ve researched the condition more. I’m glad I’ve found this site and forum and hope others are optimistic and want to live independent lives, I’ve had to mute Facebook pages and avoid other sites which often seem to be very negative and I’m trying to come to terms with my diagnosis but remain as positive as I can. I hope this isn’t unrealistic.
DonnaJean
Posts: 6
Joined: Tue Apr 13, 2021 8:06 am
Location: Montgomery, IL

Re: New to the forum? post a quick introduction

Post by DonnaJean »

Hi Rose, it has been almost a year since I was diagnosed and I learned there is a lot of misinformation and misunderstanding with this rare disease. However, I found a neuropsychologist in North Carolina, USA who provided a ton of information in a webinar that she presented on this disease. Her name is Dr Karen Sullivan. Here is the webinar link:

https://www.icfyb.com/otwebinar/

It helped validate what was going on with me. Hope you find some help and information that is validating for you as well.

I have had to learn to manage and change my lifestyle this past year. I work full time but sit at a computer. I feel without moving all day, I get weaker. It has been difficult but I know God is with me and giving me the care and support that I need. I just signed up for a customized exercise class for 8 weeks so I can build some strength back. Exercise is challenging with the fatigue I experience, but I don’t want to stop moving so I can remain independent as I continue to age.

Thank you for joining!
Donna Jean
KimAR
Posts: 8
Joined: Tue Aug 17, 2021 11:41 pm

Hi, I am KimAR

Post by KimAR »

I am Kim,
Married 42 years, to my beloved. (I am 65 years old) We have two daughters, both married to their beloved’s, they have blessed us with 8 GRANDS. My husband is a pastor at the same church for 30 years. We live in NW AR. We are both motorcyclist and have enjoyed cross country riding with many miles together and many great adventures. I have been a life long rider and I fear I am now looking at giving up my motorcycle, this will break my heart, as it has been my freedom therapy since my young teens.
Having been recently diagnosed at Mayo Clinic of Rochester this past May 2021 with Orthostatic Tremor, I have since been compelled to use my blog to help my fellow OTer’s with encouragements and information and also generate awareness, as I began to realize my own physicians had never heard of Orthostatic Tremor.
Research is really very limited, with much of it outdated. Support groups are sparse by way of staying relevant in this battle for awareness. My goal is to give energy towards building better awareness and support.

I am just beginning a blog series of 9 blogs in honor of Orthostatic awareness month of September.

Please feel free to share these blogs, as the more they are shared the more research attraction and awareness we gain in ADVANCEMENTS.

Kim of
Blog 1)
https://happytrails2u.blog/2021/08/20/o ... awareness/

Blog 2)
https://happytrails2u.blog/2021/08/23/b ... dvocating/

Blogs to follow;
3) My story – Orthostatic Tremor
(Getting our Orthostatic Tremor stories out there. That’s the one I am sending out to medical research potentials.)
4) Send and informative letter to your health care team (because most of them have never heard of Orthostatic Tremor)
5) Managing mentally with Orthostatic Tremor
6) Managing and navigating physically with Orthostatic Tremor
7) Helping your family members and loved ones understand Orthostatic Tremor.
8) I collected all research and resources on Orthostatic Tremor along the way.
9) Orthostatic Tremor Encouragements and strength in Faith.
And more………
vickiholmes@att.net
Posts: 1
Joined: Sat Sep 25, 2021 11:01 pm

Re: New to the forum? post a quick introduction

Post by vickiholmes@att.net »

I was diagnosed Feb 2020 by Neurology ordering an EMG. My Internal medicine and Orthopedic surgeon did not know of POT. Due to the pandemic, I stayed home until recently. I am trying to discover what I can do. I joined an aerobics class in the pool. I can do most if I stay by the side of the pool for support. I still do not like shopping for fear of standing in lines. Amazon has been my best friend. I have tried a couple of meds that just made me sleep. Now I take one Clonazepam at night. Tried to get Fycompa but insurance would not cover it. I cut my hours at work and work only at home. It is difficult to explain to family and friends why I am tired or why I can’t do certain things when they see me walking. If I am waiting to register at the dr’s office or at a restaurant, I have to pace back and forth, their perception is that I am being impatient. How much of my medical history do I have to provide to strangers? My hardest thing to deal with having POT is people not understanding. I have learned that this is something I will just have to cope with and figure it out as it progresses. I do wonder how much will this progress. I am fortunate to have a husband and three daughters to help me.
Vicki
Anthonie
Posts: 1
Joined: Wed Oct 13, 2021 8:47 am

Pleased to join this community

Post by Anthonie »

Let me introduce myself:
I am a Dutch citizen (83 yrs) having lived in Canada, Switzerland, Germany and the Netherlands.
In 1996 I was diagnosed OT at which time it was minor in comparison with the gravity of today.
I am an professional engineer (mechanical and industrial engineering).
Sometimes i wonder whether my mainly sitting profession/behavior has caused a reduction of the functionality of that part of my nerves, brain and muscles that controls the standing balance. Neglected use may have caused a deterioration of these organs?
Does any other "OTer" have a similar lifestyle and thoughts?
lindainnd
Posts: 5
Joined: Wed Apr 13, 2016 9:48 pm
Location: Mandan, North Dakota

Re: New to the forum? post a quick introduction

Post by lindainnd »

Hi Gloria,
My name is Linda, the user's name is lindainnd . I have been a member for years, but have not seen many new emails. Just a short reintroduction I have had OT for years, close to a couple of years after it was actually had a name. When I went to the Mayo Clinic in Rochester, MN. It was called "Shacky Leg Syndrome", remember that?
Just recently I heard now it is called Intentional Tremors, which is a little confusing to me. I wanted to hear your opinion on that and if there are any ongoing trials or any new information. I was online with the UK, Christmas Zoom very early Saturday morning. I enjoyed just seeing other people having a good time even when we all have such a terrible disabling Neurological disease. The group mainly had Essential Tremors and did start the gathering with what Trials Essential Tremors are doing. One is Jarelgree and Gyrogree, not sure of the spelling but it was interesting.
I just wanted to find out if there will be any Zoom Meetings, or like the UK had was the Christmas event.

My new Email address is owl549675@gmail.com.

Looking forward to hear from you or any member who sends out monthly events.
Thank you, Linda
Wroberts
Posts: 1
Joined: Wed Feb 01, 2023 5:50 am
Location: Wisconsin

New to the group intro

Post by Wroberts »

Hello everyone!

My name is Wendy and I am 48 years old, and was diagnosed when I was 40. I have had three opinions hoping for a different answer, but unfortunately everything came back with the same diagnosis.

I’ve been through clonazepam, gabapentin, Primidone & a few other anxiety medicines but unfortunately have not had any luck with anything working. I’m one of those lovely people that has adverse affects to many medication‘s. The side effects for me are worse than having nothing.

I’m hoping to find others that have found things that have worked or even helped a little bit. I know there are not a lot of us out there & was happy to find this group.

I also have essential hand tremors on top of it all. I’m just a shaking mess. Lol. Looking forward to meeting others that understand what I’m living with.
Djscottsaz
Posts: 2
Joined: Sat Mar 28, 2015 1:48 pm

Re: New to the forum? post a quick introduction

Post by Djscottsaz »

I have been diagnosed with OT. I remember going to a Neurologist to find out why I shake in my legs when i only stood, i was only 59 years of age. I did a few test and he mumbled this "OT" word. I knew he was throwing out a few thoughts under his breath but i was listening to every word. When i got into my car i instantly Goggled this word "OT". I couldn't believe what i was reading- i felt i had every symptom worded. But then i read "one in a million get it". This was 8 years ago.
It all started after a horrid divorce with the man I loved. I experience Anxiety for the first time. I was lucky a great friend helped me. I didn't want to eat only drink. I couldn't leave her house. I loved walking her neighborhood for years when i would go visit. I found that some days i could only walk a half block and had to come home, feeling so fatigued. Other days i could walk 2-3 blocks but I was feeling afraid to go much further. Something wasn't right. I then started with thinking it was my Thyroid, blood pressure, depression, and went on a few different med for Seizures. Each one made me feel sicker than the other. Gabapentin was the only one that made me feel more stable but I felt like I was walking on a cloud and it scared me that i would lose my balance. Realizing you have to take more and more of it then it doesn't work anymore. I am a Vitamin junkie and just keep to keeping my head screwed on right and force myself to walk, even to the mailbox. Getting into a heated argument will make me shake like no tomorrow so i practice affirmations and be kind to myself and everyone around me. This keeps me calmer than anything out there. I am still working very part-time in Landscape Design. When I go to a new home i case out a place to sit immediately and explain i need to sit or i can not think. Everyone is so accommodating.
It took me some time to realize i can get a wheelchair at the airport as the TSA lines are not up for discussion. My NEW wonderful husband likes it as we don't ever get stuck in lines anymore. He makes me feel special. He does all the grocery shopping and an amazing cook. Sometimes I go to the grocery store, about once a year to see new items while holding onto the cart and speeding through isles, even going back 2 or 3 times down the same isle. I go to the car and he checks out. I need someone to help like this even shopping for clothes. Yes, i have read that heat makes it worse. I live in Phoenix!! I go on a quick shopping spree and I am drenching wet. A cold beer is my reward after. When it comes to drinking, I do have to have a limit as the next day i am worse with my shaking. But it does relax me. A glass and half of wine is my drug. It calms me when around people. Anxiety is not my friend.
But I just take each day as it comes and thankful for my energizer husband. I sit for 15-20 minutes and then go do 5 things around the house and then run back for another 15-20 minute relaxation. I am not doing landscaping anymore but I did design an amazing backyard that is a tropical paradise here in Phoenix. No one can believe they are in Phoenix once they step into my yard. I was able to get that done with the help of my amazing strong husband before it hit too hard. I have taught him so much on what to do to keep it in shape. We spend most our time outside in our yard watching the sunsets or playing backgammon.
Thank you for taking the time to read my novel. Debra
ckstrnad@gmail.com
Posts: 1
Joined: Thu Mar 23, 2023 12:21 am

Re: New to the forum? post a quick introduction

Post by ckstrnad@gmail.com »

Hello to all
After 7 years of hearing that I just needed to walk more to "strengthen" my leg muscles I stumbled across a medical mystery post that described my situation exactly. I did many hours of research on IT and found a neurologist at Anschutz University of Colorado Medical center. In Aurora CO (Denver). She also is a movement disorder specialist. After thinking I was losing my mind and becoming a hypochondriac I finally have a diagnosis and treatment plan. I am enjoying reading this site to learn as much as I can about OT and coping mechanisms. Thanks to all of you and especially Gloria for helping all of us. Cynthia (Rural Kansas)
aliros
Posts: 2
Joined: Sat Jun 03, 2023 5:48 am

Re: New to the forum? post a quick introduction

Post by aliros »

Hi, I am Alison from Northumberland, UK. I am almost 78 and I do have arthritis in my hip. I haven't actually been diagnosed with OT but the doctor from the Neurology dept said he suspects it could be. The leg tremors only started about a year ago. Since I had a severe bout of vertigo about 11 years ago, my balance started to be a slight problem. I think my actual word I used to the chiropractor was that I felt "wonky", not dizzy but wonky. As the years went by this became a real balance problem.It was quite gradual until I realised I was scared of falling and went to the doctor. So difficult to explain what I was feeling as they all take the word balance as "oh you are feeling dizzy" NO! Anyway, someone finally took it all seriously and sent me off to the neurology department. The doctor gave me lots of tests and asked me many many questions. He was incredibly thorough and seemed to completely understand what I was trying to say. I now have to wait for an MRI and other tests to see if they can figure out what is going on.
This forum is very informative and I recognise many symptoms that people are describing.
June M
Posts: 1
Joined: Fri Oct 20, 2023 10:53 am

Re: New to the forum? post a quick introduction

Post by June M »

Hi, my name is June, and I have recently been diagnosed with OT. I live in upstate NY, am 74 years old, married, with 3 grown children and 3 grandchildren. My husband is a huge help and has made everything I have gone through bearable. I have had uterine cancer with surgery, chemo and radiation 5 years ago, and 2 lung ablations in the years since. My last 3 scans were clear, and I hope they stay that way! About a year ago I mentioned to my oncologist that I was feeling unsteady on my feet. She didn't think it had anything to do with my earlier therapies, but one never knows for sure. She recommended seeing a neurologist. My PCP agreed, and wrote the referral to a neurologist. Her first thought was peripheral neuropathy, but an EMG test ruled that out. On my next visit, determined to better explain how I was feeling, I stood in the exam room for 5 minutes before she came in. My legs were vibrating and after feeling the tremors, and listening with a stethoscope, she said I had a classic case of OT. She explained that it was a rare disorder, and only had one other patient with my diagnosis. She recommended this web forum, and prescribed a low dose of Clonazepam (25mg 3x a day). This dose seems to have helped somewhat, although I still can't stand in one place for long. I am always looking for something to lean on or hang on to. Reading through this forum has made me feel that although OT is rare, there are people out there that know what's happening to me, and maybe will have suggestions for things to try that have worked for them. I feel lucky that my journey from symptoms to diagnosis was much shorter than some of the others on this forum. Maybe that means that more doctors are aware of OT...
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