New to the forum? post a quick introduction

[gloria]

Hello Phyllis:
I understand how you feel that you would like to meet other people with OT we all do and it is very helpful to us. However when you registered you forgot to leave your location in your PROFILE and although you are giving this info in the above posting it will only show with this post and not be on the membership list which would show with your location whenever you post again. For example: On the right side of this post my name and location automatically shows whenever I post. We are a rare disorder and it is important to give the geographic picture of where we are located. This would help connecting with others living within a reasonable distance and for researchers planning studies. Your general location is all that is needed and it is not recommended to post specific addresses. For other reasons “why and how” to leave your location  just click on the following:   http://www.orthostatictremor.org/phpBB3 ... f=16&t=313 .

Hope this helps, Gloria

[Sketches]

Gloria, thank you. I have just updated my profile. I hope it helps to find some folks in the area. I think it might take a while for me to learn to navigate this site. It looks as if there is a wealth of information here, even though there is not much I have learned out there in the world.

Where is the best place to post where people are most actively participating?

Thank you again for responding.

Phyllis

[vbourgon2]

Has anyone surveyed forum members to see if thyroid issues are common to most/all those with OT?

[Sketches]

Vbourgon,
My blood tests show elevated thyroid antibodies and nodules, but thyroid hormones are usually normal. Also autoimmune to intrinsic factor and elevated ANA. So I get monthly B12 injections, which are somewhat helpful.

Phyllis

[gloria]

Phyllis : I was tested a number of months ago with very low B12. I'm now taking a prescribed supplement to help with this and also assist nerve funtions and production of the myelin sheath. So far I can not see any real improvement but have been told that it can take for some 6 months. I'm wondering now how many other OT people are low in B12 since many years ago there were a few cases of OT people sighted where their tremors stopped after taking B12 shots over a period of time. Very interesting????? Gloria

[Sketches]

Gloria, Yes, my B12 was low, but it was due to the problem with intrinsic factor. My body could not absorb B12 through my stomach so that is why I get monthly injections. I believe that the injections do make a difference, but it did take a while before I felt the difference. B12 definitely helps strengthen nerves, but the body must be able to absorb it properly. Even if the levels are low/normal in USA, they may be considered to be low in certain other countries, and even the low/normal readings according to US guidelines can cause problems.

[MaureenB]

Hi Sketches and Gloria
a recent blood test showed I also was not absorbing vitaim B12 through my stomach.I have had 6 injections of B12 over 10 days and will have one injection every 3 months to top up.
My aunt and grandmother also had the same problem,(Pernicious anaemia) My aunt is still going strong at aged 92..
My Doctor alowed me to have the injection a few years ago because i had read it may help,with balance , however it was discontinued as it did not help the O T,,, But now it appears my body is not absorbing it .Time will tell if it helps O.T.long term.
Its also interesting that my Thyroid test has come up ,board line on two occasions. My Dr is keeping an eye on that.
Regards to all
Maureen.

[admin]

Has anyone surveyed forum members to see if thyroid issues are common to most/all those with OT?

In response to the earlier post by vbourgon2 about testing for Thyroid issues we have posted a new poll. If you have a moment please answer the quick questions, you will need to be logged in to the forum.

Link to Thyroid questionnaire

[admin]

As a result of the discussion about B12 deficiency, there is a new poll. If you have a moment please answer the quick questions, you will need to be logged in to the forum.

Link to B12 questionnaire

[admin]

and... the third item on todays todo list is that Gloria posted a new update on her "experience" page:

http://orthostatictremor.org/my_experience/index.html

the latest post is on the bottom.

[linwoll]

Hi -
My name is Linda, 66 yrs old, and I officially was diagnosed last November, after having had symptoms for approximately 18 months. I had done some research on the internet about my symptoms, and thought that OT was probably what I had (sounded like the least of many evils listed with same symptoms) and saw my GP. She had never heard of OT, she thought I was saying orthostatic hypertension, but I knew what that was and told he this was not that. She referred me to a neurologist, who did say that she thought it was OT. I was scheduled for an EMG, but mostly to rule out peripheral neuropathy. From other reading that I have done, it sounds like there should be some measurements of the tremor from that, but I was lying down, so ??? Since early December I have been on Neurontin, starting at 300 mgm three times a day, and it has been raised to 900 mgm three times a day. I was experiencing some numbness in my fingers, so recently I was told to start lessening the dosage by one pill once a day until symptoms were better.Does anyone else have experience with this medication? I have seen some improvement since on this medication, I can take a shower without sitting, same with drying my hair. Hardest thing is grocery shopping. Glad to find a place where there are other people with the same experiences, and frustrations.

[gloria]

Hello Linda: Thank you for posting your introduction to OT. I'm glad that you found a neurologist who knew the symptoms of OT and suggested a EMG however the EMG to measure the OT tremor Hz needs to be done standing with sitting reliefs . I have had 14 years experience with Neurotin (Gabapentin) and no side affects. It only moderates the symptoms at this time for me but I know when I forget to take it. Taking a shower without sitting and drying your hair sounds good to me! You find grocery shopping more difficult because of the unknown's of being in a public environment and the challenges that can happen. Gloria

[Raven]

Hiya I have orthostatic tremor, I was diagnosed about three years ago ,but have had the symptoms since 2008 about eight weeks after a kidney transplant, I also had heart surgery that year , so I thought I was very weak when I shook ,I started trying to get strong by exercising and strengthening my core , but after any thing I did I felt exhausted and was in pain and ended up worse off . I attended transplant clinic on a regular basis and kept telling them until three years went by and I was referred to a neurologist and diagnosed with ot. Like others , it was a relief to be diagnosed . Then the bad news sunk in ,there is no cure yet , all the meds I have had don't help they only make me sleep all day (which I don't want to do) or make me gain excessive weight ,I am only 5ft tall and all that weight makes me breathless, and being a kidney patient I must be careful I don't do anything to risk becoming diabetic . I try to live as normal a life as possible , I live alone , and I'm not a moaner, but I do get exhausted physically and mentally and I have to rest my body a lot . I'm independent and always have been I find it hard now to keep that indepence going as I need more help now. I can't hang washing , put petrol in car , do my ironing ,wash windows , cook safely , stand in a queue ,stop and chat ,dance and so many other things that I'm sure you all can't do either. Just lately when I go to Ireland to visit my son , I have been stopped and searched ,stopped and asked to search my bag and stopped after customs for a drug tool to test if I have anything in my bag ,I think it's because in their eyes I must look suspicious when I'm going through because I'm tremoring , getting anxious and always fidgeting and looking for the next wall to lean on or the next solid pole or fence to hold on to , so the next time I'm getting help ,I am now looking to get a walking stick with a seat ,I don't have trouble walking fast but can't walk slow or stop ,I have noticed I am getting worse. I have to listen to my body and don't push it any more if it needs a rest ,that's what I do ,ooh that's enough for now thanks very much raven

[gloria]

Hi! Raven:


" I have to listen to my body and don't push it any more if it needs a rest"

Those are great words of advice. I am so glad that you joined the forum and look forward to hearing how you are doing.

All the best,

Gloria

[sharonmathews54]

Hi! My name is Sharon Mathews. I am a returning member. My actual first post was back in 2009. I was so depressed then because I could not find out any answers from the many doctors that I had been referred to. That's when I was happy to find your site and see that I am not alone with Orthostatic Tremors.

My tremors started right after having a terrible sinus and double ear infection. At first I was put on two weeks of antibiotic and then another six weeks of antibiotic. When the infection first started I could not get out of bed or even turn my head from side to side. My husband was out of town on a business trip for several days and when he returned he took me straight to the Emergency Room at the Brandon Regional Hospital here in Brandon, FL.

My first real answer to my problem came when I was referred to a neurologist at the University of South Florida here in Tampa, FL. Her name is Theresa A. Zesiewicz, M.D., F.A.A.N. She called in another neurologist who did testing that measured the tremors as they were happening. He confirmed that I had Orthostatic Tremors. He said it was the worse he had ever tested. They prescribed different medications. I remember Gabapentin and Neurontin. Other doctors thought I was having panic attacks and prescribed paxil, effecxor and several other drugs. Nothing helped and only made me more sleepy to the point I was falling asleep driving.

Right now I am house bound. I do go out occasionally with a wheelchair. Most of the time I do not have help to load the wheelchair. I am afraid to drive due to breaking down or being stopped by a police officer for any reason and he ask me to step out of the car and do things that I am not able to do. Now days they don't listen to your problems and think your just not wanting to cooperate with them. Maybe I am just watching too much TV. LOL

The OT has progressed to the point that I have great difficulty even getting to the bathroom. I have fallen and had my legs lock up on me so many times. I use my walker and pray to God and Christ Jesus to help me make it to the bathroom. So far I haven't figured out what I could do differently to get there much easier. Cooking is very difficult for me so now my husband is doing most of it and buying the groceries too. I am so thankful for all he has done in helping me. Turning around is very difficult now and being able to sit down on the walker is almost impossible. That's why I now rely on the wheelchair if I have to go out of the house. Hubby helps me into it and I don't have to keep standing and sitting over and over. It was so embarrassing in public and I almost landed on the floor so many times.

Having OT has made me so very depressed. I haven't given up completely yet. Had problems with insurance and seeing the doctors that knew me well. Now I am on an HMO. Next week I will see my new primary. I am praying that he will be understanding and knowledgeable about OT.