New to the forum? post a quick introduction

[drcraige]

Thank you Gloria for your quick reply.

In regards to your toes, do you wear foot orthotics or insoles that are made of a material that is softer and contours to your feet? These types of devices are often helpful.
Craig

[Victoria]

Hi

My name is Victoria, I am 42 and live in Sussex (UK) I have been sort of diagnosed with OT... it goes something like "When standing a needle in quadriceps records a tremor around 11-14HZ (? orthostatic tremor)" and "Needle EMG shows chronic neurogenic changes in both quadriceps" I was then discharged from this lovely hospital the same day after a 3 week stay with no one knowing what to do with me.... now the neurologist has left and I'm well fighting for as much support as I can get. Last night's call to the Gp went along the lines of, OK I've had enough of being nice, get me a neuro physio, hydrotherapy and some pain management.... and another neurologist! I'm a pretty strong person, I was in an RTA 8 years ago which left me with chronic daily hemiplegic migraines, so I know what pain is and I know what drugs are and I certainly know the side effects they can have too. I know how to put on the fake smile and I know how to say "I'm fine". You carry on because you have to.... my husband didn't.. he chose the walking out option just before I was taken into hospital in May, stepping over my crumbled body saying "I just don't love you any more". So I've learn't to love my crumbled body enough for me and him ! Over the last 4 months I've found disabled sport groups, which I cant wait to join. The only think holding me back is the DVLA who took my license away! My 2 children are fantastic, I have a son who is 12 who really struggles to understand how I just carry on and a daughter who is 13 who understands wholeheartedly as I taught her to be the same as she also has a rare condition called ehlers-danlos sydrome and also has a social communication disorder which is part of the Autistic Spectrum . I have two beautiful dogs, a husky and an Alaskan Malamute, both rescues. Some say I have my work cut out... I just say life is what you make it.

[gloria]

Victoria, You sound like a strong intelligent person and will search out a good neurologist to help you with your OT. Please keep us posted. Gloria

[Johnatkirn]

Hi,

I am John Morris, a retired architect, aged 74 and I live in Scotland about twenty miles from Glasgow.

It has taken about five years to get a diagnosis having been passed to various doctors and consultants. The lucky break was when my Doctor read an article in a neurological publication and recognized my symptoms. As recently as yesterday I had a diagnosis from a neurologist at the Department of Neurology at The Queen Elizabeth University Hospital, Glasgow. I was the first case he had seen in the flesh though he was aware of OT. I had previously seen a private consultant who works in Edinburgh; this was due to the extended waiting time to get a National Health appointment. Both agreed that I had OT and gave similar advice. It was not thought that I would gain much from medication at this time, but it should be kept under review.

I do detect that my condition is progressive, but at present, I can do 85% of my former activity compared with five years ago.

My Interests are photography and boat building and watching the shipping on the River Clyde.

Regards to All

John M

[gloria]

John: Thank you for writing a very interesting and comprehensive introduction to your OT. Now that you are retired do you have much time for walking? ....it is our best exercise no matter what stage of OT we are in. You are correct OT is progressive and I was pleased that you reported ...[I can do 85% of my former activity compared with five years ago.] ..... I hope more OT friends will report how long they have had OT and where they are with their standing time from the beginning of their OT and the present. All the best and look forward to your continuing postings . Gloria

[mattrx99]

Hello my name is Matt.
I was given a preliminary diagnosis with OT yesterday Sept 13th. I've been symptomatic for about 9 months. I was diagnosed at Allegheny Health Network in Pittsburgh. Pa by physical examination. I'm 40 years old and I have been told that OT usual shows up in the late 50s and 60s. Is there anyone a bit younger like me?

[renaely]

Hello my name is Matt.
I was given a preliminary diagnosis with OT yesterday Sept 13th. I've been symptomatic for about 9 months. I was diagnosed at Allegheny Health Network in Pittsburgh. Pa by physical examination. I'm 40 years old and I have been told that OT usual shows up in the late 50s and 60s. Is there anyone a bit younger like me?

Hi Matt, I think 50-60 is just when they manage to properly diagnose it, since it's not well known. I received my diagnosis at 41 at UF Health in Jax, FL (If I had to guess, I've had it for 5yrs and just didn't realize what was going on until it got a lot worse--and my neurologist wasn't that great), the drugs became useless within 6 months as the disease got worse, and I just completed DBS implants and got most of my life back at 42. Hang in there.

Rena

[gloria]

Hi! Matt: In answer to your question the 50's and the 60's are the mean age for OT but occasionally there have been people who report in having been diagnosed at a younger age. As you read thru the website you will come across a few but no matter what the age of onset is the symptoms are generally the same. You are lucky to have been diagnosed so quickly and was not misdiagnosed as in some cases. As you read thru the website please continue to ask questions as you have , there are a lot of OT friends here to help. Gloria

[Mimijt]

Hi! I am Joan, 70yrs. old and live in western NC,USA. My local neurologist suggested OT about 10 months ago, and after an 8 month wait for an appointment, it was confirmed at the movement disorder center at Wake Forest U. Baptist. I first noticed symptoms about 3years ago after hip replacement surgery, but they may have been present earlier, as l was favoring that hip and not standing for long. So far, drugs cause dizziness and other problems, so I am interested in exploring focused ultrasound. I appreciate this site and forum! Helps to read the experiences of others.

[gloria]

Hi! Joan: Thanks for posting as a new member of the website. I like your approach of " fighting back at OT" by exploring carefully different avenues that might be of help to our OT lives ! Do you think that the movement disorder center Wake Forest U.Baptist where you were diagnosed might be a good resource for more information about focused ultrasound ? Look forward to your future postings. Gloria

[Mimijt]

Hi Gloria! Not sure if I am replying to this right. Wake Forest is not doing anything with focused ultrasound at this point. The young neurologist I saw said they do DBS about 4x per week (I don't want to go there!) on mostly Parkinson's. The nearest site for focused ultrasound is UVA, where they have trials for other conditions including ET. She was not particularly helpful in offering help to explore the possibilities there..but I want to research this more, anyway if possible.

Have you or anyone else out there read John Grisham's book "The Tumor "? It is not a lawyer novel, but addresses how focused ultrasound could have possibly helped his friend (who is fictionalized for privacy) to combat a brain tumor. It is a free download from Amazon. Grisham does not want any profit from this.

Is there a shortcut for "focused ultrasound " other than the obvious?

[admin]

This is a LINK to a recent article on focused ultrasound.

[byng0]

Hi, I'm a 66 year old male who lives in Chilliwack , B.C. Canada
Was diagnosed Yesterday Oct 03 2016 with OT. Been having symptoms since 1986 but has gotten worse over the years. My family Dr. has had me on Lyrica for past 10 months but have had no improvement with it. Neurologist has given me a prescription for Clonazepam to try but with no guarantees as only about 30 % according to him show improvement .
Just a brief introduction for now, and thank you for the website.

[gloria]

Thanks! byngo for posting a very interesting introduction of your experiences with OT.....except for your younger age of the beginning of your OT, the living with and searching for a diagnosis is very familar for most OT people. You are now 66 years but you report that your symptoms started 30 yrs. ago. With the onset of your OT symptoms in 1986 do you remember how long you were able to stand when you first noticed your symptoms? Did OT upset your occupation? Clonazepam seems to be the beginning prescription most neurologist give. I like your neurologist because he is being very honest about the results with no guarantees. We have no meds that will control the tremors completely they only ease the tremor a bit but we generally know when we forgot to take them. Look forward to more of your postings, Gloria

[byng0]

Thank you Gloria, for your comments.
In 1983 I had back surgery for a herniated disk, L4-L5, caused by a fall when I was 20...The operation was a success for pain but started to notice numbness in my feet within 2 years. My profession was now a promotion from a maintenance foreman to a Supervisor for the Van School Board so manuel labour was not required but site visits and problem solving were. Approx 1987 I started to notice that while standing and talking, I would need to lean against the wall or pillar or something after a few minutes. This was kind of the Norm for about 10 more years and then found the standing time and the need to lean was getting shorter. mentioned the feet numbness etc to my family Dr. and the general analysis was scar tissue from my back operation.So I put up with it and retired in 2006.Moved from Vancouver to Chilliwack BC which is about 65 miles away and had to find a new Dr. Put up with my condition till about a year ago and let my new Dr. know I was really not happy about how I could only stand for 20 - 30 seconds in one spot, had to avoid lines etc. He took an interest and then started me on all the tests.....EMG, MRI ( from neck to tail bone ) then to a Neurologist...This all takes time due to waiting periods in the Medical system. Well as I said the Neurologist ( a younger fellow ) tells me I have OT and also some neuropathy in the feet area. He says OT is a rare condition and when he was in Med School they told him that most Neurologists will probably never come across a patient with it . And he said one of the trick questions on the Final Exam was a diagnosis of a patient who had symptoms and the answer was OT. Just so happened I was this Neurologists 2nd diagnosed patient with OT and he wanted feed back on the medication in a month he prescribed.