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

Ziggy
Posts: 1
Joined: Mon Feb 20, 2017 7:48 pm

Re: New to the forum? post a quick introduction

Post by Ziggy »

Hi Everyone!
My name is Patty I am 70 years old and I live in
Tinley Park Illinois
I retired from the US Postal Service where my job was to stand in place at the counter for 8 hours a day 40 hours a week. I did this for 25 years and now I can barely stand two minutes without shaking.
I'm fairly new at this since I think this started in Feb.2016 with a severe case of shingles. My GP said that even after the rash went away I might still have pain when under stress or even out in the sun. And he was right. But what I didnt expect was shaking in my legs when I was standing. At first I thought it was weakness from the virus and would go away. When it didn't I went back to my GP and he said that the virus must have destroyed the nerves in my back affecting my legs and that I should just live with it
But the more I thought about it I didn't understand why I had no trouble sitting or walking but just when standing. So I went online and luckily found a letter from someone to the Mayo Clinic that described my symptoms exactly. I was so relieved that I wasn't going crazy! I then asked my GP for a referral to a neurologist
In Nov 2016 I began treatment with Dr Jennifer Goldman MD at Rush University Medical Center in Chicago and she recognized that I had OT immediately. She put me on 300mg a day of gabapentin and gradually increased it to 1200 mg a day now. It gives me some relief from the shaking but seems more effective helping me cope better with crowds and waiting lines
Dr Goldman also said that she went to medical school with Dr Diego Torres and since OT is his specialty I should get in touch with him.
That's how I found this forum and all you fellow OTers. Thank you Gloria Jeff and everyone for all your stories and information. I'm totally addicted and read as much as I can about our common disorder.
Hoping to see you in Omaha in September to compare notes in person.
Be AWAP (as well as
Possible)

Patty
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! Patty: Just read your introduction to the website.........what a great path you followed from Dr. Jennifer Goldman to medical schoolmate Dr. Diego Torres ( specialty OT), the website, and best of all we will look forward to seeing you at the September meeting in Omaha. I have always said being in the presence of other understanding OT people is the best medicine we have !!! In the meantime if you have any questions please ask.......... Gloria
Roberta
Posts: 5
Joined: Mon Jan 16, 2017 5:10 pm

Re: New to the forum? post a quick introduction

Post by Roberta »

I am Roberta from Portsmouth, Virginia and I am new to the forum. I first had problems in 1976 when I was 32 years old and in my first trimester of pregnancy with my first child. In the late 1970s I saw a neurologist from Columbia Presbyterian in New York City, who said that I had an interesting tremor but he did not know what it was. I delivered my second child in 1982 and as as with my first child I hemorrhaged. My doctor did blood tests and found that I was deficient in B12; he felt that this deficiency may have caused nerve damage and the tremors in my legs. Then my ears were checked as it was felt an inner ear disturbance caused the problem; my ears were fine. I then was fitted with support stockings as there was a feeling that swelling in my legs caused the problems. A couple of neurologists indicated that I had mild cerebellar dysfunction, which caused the problem. My worst moment was when I was advised that it was a psychiatric problem. On June 30, 2010, Dr. Armistead Williams, a neurologist in Norfolk, Virginia made the diagnosis of orthostatic tremors, based on clinical history and evaluation; it took almost 34 years for me to get a diagnosis. My father had a head tremor and a hand tremor and after the orthostatic tremors I developed head, hand and voice tremors. I was under a lot of stress when the tremors started in 1976, but I do not know if stress with a predisposition to tremors because of a family history may have caused the tremors. When I was a teenager, I fell on the ice and fell hard on my head, but I do not know if that is any significance in terms of the tremors. What helps me the most is walking two miles each week day morning when I get up. It helps me mentally and it helps my balance.
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 »

Roberta: What an excellent comprehensive report of your history and possible causes of your onset of OT. You asked the question of stress as a possible cause and prehaps it is because it is a frequently asked question and stress weakens the immune system. Also you mentioned having had a hard fall on your head as a child and this is also another questioned cause that has been reported. Thanks for a good introduction, Gloria
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 Roberta...interested when I read your post...I also when questioned by my neurologist if I ever had a significant knock to my head as they discovered I had excess fluid on my brain scan...which is believed to be longstanding...I reported that indeed at the age of 12 years I too had been sliding on ice ..fell and knocked myself unconscious...in those days it was deemed unnecessary to follow up and when I 'came to' was brushed down n sent back to class! I'm sure I was 'out cold' for quite a period.
mosquitoman
Posts: 1
Joined: Fri Mar 03, 2017 4:18 pm

Re: New to the forum? post a quick introduction

Post by mosquitoman »

> Gloria,
> First off, you are correct my real name is not Mosquitoman,
> its Bob Boggs. Mosquitoman is an e-mail name I have used for over 30
> years, being I was in the mosquito control business. I worked for a
> company out of Chicago, on the west coast of the U.S. and developed
> and set-up mosquito control programs for City, and States until I
> retired 2 years ago due mostly to my situation with OT. To answer your
> questions on my history with OT, I will do the best I can to remember.
> I just turned 70 in January and was born in St. Petersburg, Fl. I have
> lived in Missoula ,Mt. for most of the last 20 years with my wife of
> 49 years. We have 3 children and nine grandkids living in both
> Missoula and St. Petersburg ,Fl. I was diagnosed with OT about 8-10
> years ago by a Dr. John Schafer ,a nuerologist, who practices at
> Providence Medical Center in Missoula. He diagnosed it in about 60
> minutes on my first visit. I feel he was able to do this being he used
> to work and did research on OT at Baylor University before moving to
> Missoula and experienced a case or two there. He told me not much was
> known about OT, but felt it was something I could live with. It was
> very mild at the beginning but as most will tell it does progress with
> time. I was put on clonosapam or Diazepam at first with very limited
> success. Between Dr. Schafer and my regular GP they over the next
> several years tried several other drugs, mostly SSRI's with mostly no
> help at all, and bad side effects. I have developed vertigo in the
> last 2 years also which seems to be relatively stable with small
> doses of diazepam and I can walk short distances without aid. I have
> taken several treatments for movement disorder but mostly with little
> to no noticeable results. Dr. Schafer several months ago suggested I
> don't continue to visit him being there is very little or nothing he
> can do for me other than a social visit. I also visited Oregon States
> University for movement disorder with no positive results. At this
> point I feel very helpless and hopeless with this condition and
> hopefully there is something on the horizon that maybe someday can
> help. Hope I have remembered all and I can contribute to the
> challenge. Sincerely, Bob Boggs
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 »

Bob: Happy that you followed my suggestion to post your OT experience on our OT website where there is a large number of other understanding OT friends that are living with this ban in our lives from over 40 different countries. A good place to compare and ask questions too . Look forward to your postings, Gloria
Margaret Fredrickson
Posts: 4
Joined: Sat Mar 25, 2017 8:01 am

Re: New to the forum? post a quick introduction

Post by Margaret Fredrickson »

I am new to the forum. The whole website is very attractive and easy to navigate. Thank you for creating it.

I have knee issues of bone on bone. They have been that way for at least three years. I am afraid to get knee replacements because I think that the OT might make problems with the surgery or the recovery. Could people offer thoughts on this?

I am 79 years old and have had OT for about 17 years. At first it was diagnosed as a vestibular problem (inner ear) but did not respond to therapies. Then when I mentioned a the stiff frozen feeling after standing a while it was diagnosed as early Parkinson's. That went on for years and I tried several medicines all of which had no effect. I suggested the possibility of OT to that neurologist and she sometimes would say Parkinsons and sometimes OT. When I went to an exercise class special for Parkinsons It was clear that they had something different from what I have. So I switched neurologists, He said I did not have Parkinsons or MS or ALS but had a "condition." He accepted calling it OT, but I don't think he ever could see the tremor or really believed me. So I went to a movement disorder specialist at Lehey clinic and she said it was OT with no known sure treatment and that I was lucky to be able to stand up. That was about three years ago.

I do and have done various physical therapies and senior exercise programs. They are the only thing that has done any good, but I continue to get worse. Now I use a cane and walker at home rarely go out of the house unless I have someone with me to help.

A physical therapist said that a strong medicine might have started my symptoms.
I had tamoxifen following radiation for Breast Cancer. That was about 20 years ago. I stopped the Tamoxifen a year or two early because I thought it might be causing problems. I also wonder if the radiation could have affected something in my spine. Then I went on an Arctic cruise for 10 days. When I got off that my I could feel the roll of the waves for weeks afterwards, so that was an inner ear thing.

I look forward to this forum for sharing information and experiences.
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 »

Margaret: I welcome you to the website and as I read your introduction of your OT experiences I kept thinking this is almost my early OT experiences before I was diagnosed... I'm a bit older 86 and have OT longer and one of my first diagnoses was Parkinson's too. I found the med's I was given where not working plus I did a little more research on Parkinson's and did not believe I had Parkinson's and ended my relationship with my first neurologist. I also have bad bone on bone knees but still hesitate on surgery although recently my neurologist is suggesting that I have surgery. Most of us find walking at a good heel toe pace is our best help for our leg muscles. I find just being outdoors in Nature good medicine. ( I like working in a garden but of course it is sitting on garden stool.) Also as you go thru the website you will read there has been research that has presented some encouraging result for our future. I hope that now that you are a member and have many OT friends you will not feel so alone and will find ways of not being house bound.... not good for your spirit. Look forward to your postings, Gloria

PS: I also had breast cancer surgery ...... followed with radiation but had OT before the cancer.
JaneR
Posts: 1
Joined: Wed Mar 29, 2017 6:58 pm

Re: New to the forum? post a quick introduction

Post by JaneR »

Thank you for the contact, Gloria. I live in Fountain Hills, Arizona, and was diagnosed with orthostatic tremor by seeing a neurologist just this past week. I am 78 years old and have always been very active. I go to a trainer each week for strength training and walk daily. I had been trying to find out why I was unable to stand in one place without feeling like I was going to fall down for over a year. It was actually a relief to put a name to the condition. The treatment the doctor prescribed for now is thrice daily Gabapentin, 100 mg. I will see the doctor again in 3 weeks to assess the situation. I would be interested to hear what others do to alleviate the symptoms, if there are any possibilities. Jane
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 »

Jane: Here on the Forum you will find the many ways other OT people have had to make changes in their way of living to cope with the demands of OT. You asked " I would be interested to hear what others do to alleviate the symptoms, if there are any possibilities." Unforunately there isn't anyway to alleviate the symptoms as an individual OT person with meds, etc ....... however, you will find as you read more on the Forum about current research exhibiting some success. Gloria
Warren H.
Posts: 15
Joined: Mon Mar 13, 2017 9:03 am

Re: New to the forum? post a quick introduction

Post by Warren H. »

Four month report: On Feb. 7 & 8, 2017, I had the repetitive magnetic stimulation therapy at the Univ. of FL in Gainsville. After 4 months, standing still does nicely but after a while I become uncomfortable standing still - my legs start to feel weak. All I have to do is move around somewhat voluntarily and I can shake the feeling off. I find walking briskly for 30 minutes each morning helps greatly otherwise I start to feel cramps in the calves of my legs. Also after standing for a greater lengths of time - say one hour - even moving around, I start to feel uncomfortable and must sit down for a few minutes then I'm good to go again. Note since the therapy I have not stepped or moved involuntarily which is a total improvement over my prior condition. Warren Sharp in Venice, FL
kyurtse
Posts: 1
Joined: Mon May 08, 2017 12:28 am

Re: New to the forum? post a quick introduction

Post by kyurtse »

I was just diagnosed with OT a few days ago, and have been experiencing my legs shaking uncontrollably while standing and feeling unsteady on my feet, I didn't know what it was, so I finally got in to see a Neurologist and she has prescribed Neurontin, I hope it works, this has really changed my life, I find it difficult to just go to the store, and I try to avoid social interactions especially if I'm standing have nothing to hold onto, I was once very social, and had a career as a Nurse for over 30 years, now I stay at home and try to just get through the day, I also pushed myself yesterday and took my older granddaughter shopping and I had a cart I was able to lean on, but I was very uncomfortable, today my hips hurt and the back of calves, it's awful, just a nagging pain. I hope to be able to see how others deal with this disease. I was also diagnosed with essential tremors of my arms, hand, and head a few years ago, that was bad enough but now this, anyway I am glad my Dr. was able to find out my diagnosis, I hope to be able to research anything I can to make these symptoms better. Thank you for letting me join your group.
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: New to the forum? post a quick introduction

Post by renaely »

kyurtse wrote:I was just diagnosed with OT a few days ago, and have been experiencing my legs shaking uncontrollably while standing and feeling unsteady on my feet, I didn't know what it was, so I finally got in to see a Neurologist and she has prescribed Neurontin, I hope it works, this has really changed my life, I find it difficult to just go to the store, and I try to avoid social interactions especially if I'm standing have nothing to hold onto, I was once very social, and had a career as a Nurse for over 30 years, now I stay at home and try to just get through the day, I also pushed myself yesterday and took my older granddaughter shopping and I had a cart I was able to lean on, but I was very uncomfortable, today my hips hurt and the back of calves, it's awful, just a nagging pain. I hope to be able to see how others deal with this disease. I was also diagnosed with essential tremors of my arms, hand, and head a few years ago, that was bad enough but now this, anyway I am glad my Dr. was able to find out my diagnosis, I hope to be able to research anything I can to make these symptoms better. Thank you for letting me join your group.

Welcome! I can commiserate. I, too, have both OT and ET. Just when you thought the annoyance, frustration and, arguably, the embarrassment of ET were enough to drive any person to complete misery, well, along comes OT--not just an annoyance or embarrassment, a life-altering disease that even your doctors can't really tell you what to expect. It's more of a wait and see and read up on other's anecdotes about their progression. This site is where I first started the OT journey. You'll learn a great deal about the progression of the disorder, things that help to accommodate our daily challenges, and a community that completely understands what you're struggling with, physically and emotionally.

Again, welcome...and hang in there!

Rena
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 »

kyurtse: When you started your post with [ Thank-you for letting me join your group ] my reply is I'm so glad you found us !!!!!!!!!!! You will find a large group of OT friends here on the website from the US and many countries thru out the World. Learn to do coping skills that fit your way of life and do NOT give up a social life ...... learn to explain to your friends and family what you have. Walking at a good pace none stop is one our best forms of exercise. The good news is we recently have had some research that you will read about on the website.... SCS ( spinal cord stimulation ) is one ..... By the way, you will find a number of nurses on the website with OT. Please keep your OT friends posted. Gloria
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