Progression

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aussiepommy
Posts: 27
Joined: Tue Oct 14, 2008 11:15 pm
Location: Adelaide Australia

Progression

Post by aussiepommy »

Hi All,
I thought i might add a new topic since it has been on my mind. I have been curious how your symptoms have progressed since you first found out you had OT. Do you notice tremor in other parts of your body? Has your standing time decreased? Have you gone to the use of any aids. Has it changed your life socially? Has it changed your diet, to quick fix meals?
Do you think you see less progression if you are on medications?
Looking forward to sharing in regards to this subject.
jo larson
Posts: 6
Joined: Mon Mar 24, 2008 4:13 pm
Location: orange county, california

Re: Progression

Post by jo larson »

Yes, to all of the above. Recently I have noticed a tremor in my voice but not any other part of my body except, of course for the legs etc. My standing time is almost zero now. My cooking is down to almost zero also, except for something very easy, quick and of course when I am seated. Meds do not help me and it seems that through UCLA I tried almost all listed on this site. The only one I take is clonazepam when I am out socially to help the anxiety that this disease causes. For me, the disease definitely has been progressive.
DaveW

Post by DaveW »

Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:33 am, edited 1 time in total.
jo larson
Posts: 6
Joined: Mon Mar 24, 2008 4:13 pm
Location: orange county, california

Re: Progression

Post by jo larson »

Dave, please post for me what you mean when you say OT Plus. This is unfamilar to me and I and maybe others on this site need more information, everything helps all of us that suffer from this disability.
DaveW

Post by DaveW »

Comments removed.
Last edited by DaveW on Sat Dec 01, 2012 6:34 am, edited 1 time in total.
joye
Posts: 12
Joined: Sun Jul 31, 2011 1:42 pm

Re: Progression

Post by joye »

I recall symptoms as far back as 1986. because I am also bipolar and take medications, my husband, doctor and I all assumed the tremors where side effects as they seemed to increase with stress, heat and exhaustion. After feeling like I was going to fall for years, I did fall, missing one step resulting in a compound fracture of my ankle and leg with surgery, plates and screws, a cast, wheelchair, boot, walker and cane. Last week a neurologist finally diagnosed me with what i had told doctors myself for a year or so...that it was POT. I've been reading all the information here and it seems many peopl have more that POT but also ET and lots of other things. I've been on Klopopin just over a week but had been taking Inderal and Xanax before for my anxiety tremors.
I am 60 and progression really concenrs me as I've always been very independent, have worked in marketing communications and learned with my broken leg/ankle that my husband is not a good nurse. As I've read the information here, I don't see anyone who has had symptoms for 25 years before diagnosis, so I'm hoping whatever makes progression kick in passes over me.
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

I have yet to be officially diagnosed with OT yet, but I'm sure that's what is, possibly with some other balance issues, one neurologist did say NOT parkinson's.
I can trace my first symptoms back to 1997, standing in line at a grocery store. I thought it was just major stress reaction because I had gone without sleeping at nights for a few weeks and was living in fear for my life at the time.
My symptoms were shaking legs, and needing to sit. I only noticed it while standing in lines or in other settings with start-stop situations like walking slowly around a convention center looking at the booths and such.
Over the years the symptoms have very gradually increased in both frequency and visibility of the tremors. Up until just a couple of months ago, no one could see the tremors, I felt really crazy and weak for constantly needing to sit after just seconds of standing. The one good thing is that now it's very visible and very easy to make it happen predictably. Stress of any kind makes it instantly more intense. I can be very calm and almost comfortable in my home just by myself and doing nothing in particular with lots of leaning on counters and touching of walls as I walk. Then it's time to get ready to go somewhere, and I feel instantly jumbly and jittery even while walking, but it almost goes away while walking and comopletely disappears while sitting or leaning against a counter.
Yesterday I went to the doctor for a silly bladder infection. This is the first time I've been out and noticed really struggling with standing at the counter just giving my info, etc. while checking in at the doctor's office. I probably only stood for about 5-10 minutes total, but it felt like hours. I was shifting my weight leaning on the counter, holding on for dear life, and shakinging like crazy the whole time. I sat down and, whew what a relief. Walking back to the doc was fine, sitting in the chair was all fine. Standing still on the scales for weighing in is always fun. That should be one way of testing for tremors is how that scale wobbles with my balance issues.
Then the pharmacy was an experience. I never noticed how hard just standing up and waiting for seconds or maybe a minute could be. The shakes were instant upon standing. I held on to the the sign at the head of the line and watched as it shook like a huge earthquake was happening. At least now I know what I have is real and my doctor won't be treating me like I'm in the wrong place. I tried using a cane the other day and it didn't help much, for the shakey feeling, I actually felt shakier all over because I was putting the weight on my arms AND my legs. So I'm not so sure a walker would be that helpful.
I did learn that leaning has to be done just right or it won't work. I can lean with my back against a wall or a counter and I almost completely stop shaking. Yet, if I lean on my arms on top of a counter, the shaking just moves to my arms and upper body. The shakiness seems to calm some if I lean my torso against the counter, if it's not appropriate to turn around lean my back against the counter. So not touching the counter with my arms but only with my abodomen, helped some. Just touching a wall seems to be helpful. Going downstairs seems to be better if I grab the rail and sort of lean back as I go down the stairs rather than leaning on the hand and the railing. Sort of counter intuitive to how I'm feeling, but the trick is to keep the weight of my body off the limbs as much as possible.
So, I am seeing a new neurologist, my third, in about three weeks. I'm going for migraines, and the OT stuff. Finding this community has been so helpful. Thank you all for your stories and your willingness to share them with others.

Marlana
jo larson
Posts: 6
Joined: Mon Mar 24, 2008 4:13 pm
Location: orange county, california

Re: Progression

Post by jo larson »

Marlana - Everything you wrote, I could have written the very same. Ditto to everything, even the same year that I felt the shaky legs start. The story of this disease. Have you seen a movement disorder doctor yet? I would recommend going to a teaching university, if you have one nearby, for a diagnosis.
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

Hi Jo,
I have only been to two neurolotists primarily for migraines, and just a side question about feeling shaky and off balance. I would try to show them and of course, they always just looked at my hands, ask me to hold a piece of paper, and I was always sitting, so no tremors. I have only in the past few months began to understand how it relates to standing. So going to the neurologist in a few weeks, originally scheduled to focus on migraines again, is now the first one I will be seeing and able to demonstrate the OT symptoms clearly.
I am near OHSU a teaching hospital in Portland, OR, but I don't know how my insurance will cover it. But, I'm on the path now, and plan to see where it goes from here. Thanks for the nudge toward the movement specialty, I think that's probably my next stop after this doctor.

Marlana
jo larson
Posts: 6
Joined: Mon Mar 24, 2008 4:13 pm
Location: orange county, california

Re: Progression

Post by jo larson »

Marlana, as a suggestion I would recommend that you copy the first page of this site and send to the doctor before your appointment with him. I say that because most neurologists have never heard of POT and it will clue him in on what you believe your problem is with the shaky legs. My daughter and daughter-law-law both suffer terribly from migraines and my heart goes out to you having to experience that in addition to POT.
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

Thank you Jo, I've already decided to take in parts of various things I've found on this site. I had not thought of trying to send in the info ahead of time. I may give his office a call and see if that would be ok to do. Good idea.

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

Re: Progression

Post by gloria »

Marlana: I'm afraid I'm going to nudge you a little bit more just as Jo has been. We can not diagnosis over the internet but I would not bet against OT however it is important to have an official diagnosis. Do you know if the hospital you are planning to go to has a Neurological Movement Disorder Center ? If they do than that is the place to go. Once you have the proper diagnosis you will know better how to arrange your life, adding coping skills ,etc. and we are here to help. Gloria
Marlana
Posts: 48
Joined: Thu Jul 28, 2011 3:31 am
Location: Portland, Oregon

Re: Progression

Post by Marlana »

Thank you, Gloria. My appointment with the neurologist is in a few weeks. I originally scheduled it for migraines, but since then the tremors have taken a big leap, so now I'm going in for both. I did find out that there is a Movement Center in Portland, that is considered one of the top in the country for its work with Parkinson's. My insurance doesn't cover it, so I"m going to go to the Dr. I have set up with first, since he is covered by my insurance. I've read reviews on him, and he sounds like he listens and may be a good place to start, since I still do have to deal with the migraines.
When I meet with him, my plan is to ask for an EMG to get a proper diagnosis. Then either that will happen, and he'll work with me, or if he doesn't then I'll likely go on to the Movement Center at OHSU: Oregon Health Sciences University in Portland. If it's going to be an ongoing situation, then I may need to change my insurance or something.
Anyway, I've been doing tons of research, and am going to push for a rollator with a seat. I've tried a regular cane and it feels even less helpful than walking with my white cane (I'm legally blind), so the walking pole style of walking works better for me. I've seen one person who used a rollator with the handles rotated upward, which created more of a hiking stick posture than the typical leaning on your hands stance that is typical of a walker. So, I am hoping that will work better. It's the seat I'm actually after, but I'm a little to shakey for the Flipstick or even the 3 legged canes.
So, yes, a proper diagnosis is what I'm after. Then I'll be able to figure out next steps for coping and medication and all of that. So glad you are all here.

Marlana
magnbud
Posts: 23
Joined: Fri Feb 06, 2004 5:33 pm
Location: Oklahoma

Re: Progression

Post by magnbud »

Your description of your symptoms and how you lean on counters is exactly as I would describe mine! Good luck to you .
golfnut
Posts: 192
Joined: Thu Apr 08, 2010 10:05 am
Location: Sweden

Re: Progression

Post by golfnut »

Re progression:
I could stand for about 45 seconds before the tremors started at the time I got my OT diagnosis in Dec 2009. The standing time then rapidly declined and proper standing time now is 6 seconds or so without meds.
When I spoke to Dr Bain in London last year (2011) he said that his experience looking at his patients with OT, was that the progression was rather quick initially (when the OT set in properly so to speak) but that the progression then slowed down drastically. You still get worse, but the timeframe is longer - perhaps as long as 10 years compared to the initial quick progression over 2-3 years or so.
(this is how I remember his explanation)

I am now on medication and have increased my standing time before I can sense tremors to about 12 seconds. After 30 seconds the tremors are very visible, but bearable - and after a minute it's quite wobbly - I almost hop up and down! :) This is when I measure the time at home.. In a stressful situation, a crowd at the theatre for example - I think it becomes worse. But if I'm "normally" stressed at the office - the tremors are not affected but behave as usual.

About leaning: If I lean on a counter with an arm, or hold onto something with my hands, the tremors can "travel" to my arms/the item just as described above. But if I can lean bodily on something, take most of the weight away from the legs, I can stand guite a long time. Standing on one foot and leaning on something is also a good thing for me.

I hope this is useful for someone.
I'm 50 years old, soon 51 ;) and was diagnosed Dec 2009 - but have probably had mild OT long before.

best regards
the Golfnut
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