Balance problems

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Tressa
Posts: 8
Joined: Wed Feb 15, 2017 9:38 am

Balance problems

Post by Tressa »

I was diagnosed with orthostatic tremor by an assessment with a neurologist. He did not do an EMG or MRI. Can this be an accurate diagnosis? Was anyone else diagnosed this way. I also have balance problems, e.g swaying to left or right when turning. Is this also a symptom of OT? I will be discussing further with neurologist at next appointment in October but would appreciate any comments or advise. Many thanks.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Balance problems

Post by gloria »

Tressa: It sounds like you have a neurologist who is very knowledgeable of the symptoms of OT that you were describing........ the fact that you have balance problems is also part of the our OT symptoms. Also the med Clonazepan is the most common one given for OT. I believe you are in good hands with your neurologist...... and here on the FORUM we are all sharing together ways to fight back at this OT in our lives. Gloria
Tressa
Posts: 8
Joined: Wed Feb 15, 2017 9:38 am

Re: Balance problems

Post by Tressa »

Thank you Gloria. Where would we turn to for help and advice if we didn't have this site? Really appreciate being able to ask for help and getting some peace of mind! And also making new friends with fellow OT'ers !
LMP1
Posts: 42
Joined: Thu Sep 05, 2013 1:15 am
Location: Kaikoura, New Zealand

Re: Balance problems

Post by LMP1 »

Hello Tressa, My neurologist diagnosed me without the EMG test as well. He told me there was a test he could do but he was so confident that I had OT he didn't believe it was necessary. I had an MRI on the brain before I was referred to the neurologist. I too sway from side to side, especially when changing direction such as turning to go out a door. It is such a frustrating disease at times. Regards, Lynette (Kaikoura, New Zealand)
Tressa
Posts: 8
Joined: Wed Feb 15, 2017 9:38 am

Re: Balance problems

Post by Tressa »

Thank you Lynette. Was just looking for some reassurance and its good to know that others have been diagnosed in a similar way to me!
Grammiex4
Posts: 11
Joined: Wed May 19, 2004 8:21 pm
Location: TN

Re: Balance problems

Post by Grammiex4 »

I also have balance problems. Mainly after standing for a period of time and then trying to move again. It's almost like you are "frozen" in that spot and it takes some help to get going again. Looking forward to the Omaha meeting!
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Balance problems

Post by gloria »

Balancing is part of the package of having OT however we seldom fall. I have found in my many years with OT learning to listen to my standing time to find a seat. Hearing and sight can also affect balance as it does for all ......Learning coping skills for your individual life style is the best way to go........sharing them with all is good too. Gloria
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: Balance problems

Post by Betty »

Hi everyone,

Thought I would jump in here regarding balance problems; I have them as well.....but I also have vertigo. However, I have had that all my life and it is just part of me. I know the difference between the two.

Regarding falling; I have fallen twice in the past year. :o The first time had nothing to do with my vertigo; I was using my walker and it was about 6:00 p.m., I was tired and going to the bedroom to change clothes when my legs felt very weak. I knew I was going to fall; I tried to turn my walker around so I could sit, but my legs just went limp and down I went.

We have tile floors and I fell from a standing position to flat on the tile on my coccyx, hit my shoulder on a china cabinet and my head on the wall. My husband came running. I was okay, just very sore for several days. :roll:

The second fall was in our garage. I was disposing of some newspapers, one dropped on the floor and I leaned over to try to retrieve it, lost my balance and tried to stand up and steady myself. I straightened up, but went from a forward position to a backward position, falling into the doorjamb, hitting my head ~ good thing I have a hard head! :wink:

I am ALWAYS very careful, but both times I had no control. No more falls, but a few close calls. :wink:

Betty
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Balance problems

Post by gloria »

All of us who have OT experience balance as an issue but records show that we seldom fall... there seems to be a built in neurological response to prevent falling. The average OT is a disorder of progression whereby we start with standing time of minutes ( the beginning average can be from 10 to 15 minutes).......then progressively lessening thru the years to seconds.... and finally for me having lived with OT for 30 yrs as soon as I stand up I feel the need to sit down immediately !!!!!! Gloria

PS : There are some reports of people with OT Plus...... like all disorders with slight variation to the norm. Gloria
vanna61
Posts: 13
Joined: Thu May 11, 2017 4:35 pm

Re: Balance problems

Post by vanna61 »

Dear Gloria
Doctors didn't prescribe you to take medicins , like clonazepam, during all these years of OT? Or maybe they don't give you relief. ?
Thank you for your everlasting support 😘❤️
Vanna
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Balance problems

Post by gloria »

Dear Vanna: I have reported many times on the website since it was started Jan. 18 ,2004, as our OT friends have too about our lives with OT and med's that have been prescribed for OT trial for us that only helped to eased our tremors for awhile but there is nothing that has cured our curse completely or even lessens it much........ Clonazepam was the first one I was prescribed but did not help. Tried others and finally have been on Gabapentin for some time not that it helped very much but seemed to quiet the feeling of the strength of the tremor .......however I'm going off of it competely because it has been cited for possible memory loss. The main ban of living with OT is our standing time becomes progressively less, starting with minutes then going seconds . I personally have reached the final limit wereby after 30 years with this curse I rise up from a seat and must sit immediately. As a new member you will find at present we have had some VERY encouraging OT research results as you continue your read the postings on the website. I will look forward to reading your reports too!!! Gloria
chris1948
Posts: 3
Joined: Fri Sep 22, 2017 8:22 pm
Location: Copperas Cove, Texas
Contact:

Re: Balance problems

Post by chris1948 »

I'm new to this site, just joined yesterday. I've had loss of balance since 7 Dec, 2013 when it suddenly happened that morning. At the VA I go to I've gone through VNG tests (2), screening at the ENT clinic, 6 months of physical therapy on a Neurocom Balance Manager machine (no improvement) lots of medications (meclizine, clonazepam, dilantin, depakote and topamax) none of which helped. My CT/MRI scans of my brain show nothing wrong. In Dec of last year he threw his hands up in the air and said "I give up" and the VA paid for me to see a civilian neurologist. She did the usual reflex tests, walk up and down the hall, walk with one foot in front of the other and she also stated "I have no idea what's wrong". In early Feb this year I suddenly started getting the urge to 'stomp my feet'. It was almost as if I was marching in place at times. At times I would also lose my balance at the same time this was happening. Again, telling my VA neurologist about this was a waste of time as he was still clueless even with this new symptom. After another forum I was on suggested I might want to see a Movement Disorder specialist I did some research and contacted one here in Texas that wasn't too far away. After I explained my symptoms and listening to how the VA was just ignoring me he was eager to see me as a patient. Luckily I have Medicare and a supplement from my Army retirement. I went to see him the past Wednesday and took along all my VA records as well as a shortened version that just covered since Feb of this year when the 'foot stomping' started. Also my CT/MRI scans as well as some videos my wife had made of the 'foot stomping' taking place. He also did the usual reflex tests, walk down the hall, asked a lot of questions. When we were done and the visit took at least an hour, he verbally said that it's possible I have Orthostatic Myoclonus. In his notes he also wrote as his diagnosis Abnormal Involuntary Movement and Orthostatic Tremor. I passed on to my VA neurologist the mention of Orthostatic Myoclonus this past Thursday and asked him if there were any tests that could be done at the VA to either confirm or deny this as fact. His reply to me was "I am not aware of a test that can make a diagnosis of orthostatic myoclonus. Such a diagnosis is rare and is of little value unless it translates into a therapy which brings a cure."

So, I'm asking, is there any kind of testing that can be done either for Orthostatic Tremor or Orthostatic Myoclonus? If so I'd really like to find something in writing from a good source that I can throw back in his face.

Thank you
Chris
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