How is everyone?

[irish4411]

Thyroid issues are big in my family tree. My grandmother, mother, cousin and aunt all had thyroid problems including hyperthyroidism and Graves disease. ( I wonder if the combination along with my dads Parkinsons kind of set me up for this)
I have nodules on my thyroid that are being monitored every 6 months because they seem to be multiplying but no other thyroid complications as of now.
I found a couple of pretty small articles discussing Graves disease and OT when I googled it. Not much information though.

Like you said, too late for us but we all have families to be concerned about just in case there is a familial link.

Susan

[Marianne]

Hello all: Funny so many of you mention thyroid problems could be an underlying condition of OT. I had thyroid surgery back in 1977 for an overactive thyroid. The doctors did not take all of the gland; however since 1977 I have become underactive and have been taking thyroid medication since then. The OT did not rear its ugly head, however, until 1996 (almost 20 years later). This is the first time I have heard that perhaps thyroid problems may affect or be an underlying cause of the OT condition.

Another burning question to ask my physician when I see him in about a month.

Take care

Kaylie

[irish4411]

Kaylie,

My Mom had exactly the same thyroid issue as you. She takes thyroid meds for what is now an underactive thyroid. Has been for years. However, she is 82, with no OT at all.

It kind of floored me when the doctors at UCLA seemed so sure of themselves about a possible thyroid connection. They were referring to articles they had and were conferring with each other, it was all so new to me, so at the time it didn't really have the relevance to me then that it does now.

Susan

[MikeS]

Hi Everyone
As well as parkinsons my dad also had a thyroid problem I remember him having an operation to remove or do something it was over 40yrs ago.
We are doing a great job here of info sharing I wonder if there is someone who could collate this info and do something with it? Any volunteers ?
I would also like to know how many would go to an OT meeting Im guessing in America ? At this stage take cost out of the equation just a head count.
Thank you again to everyone for keeping this post going .It dosent matter if somethings are repeated or we just say how we are feeling today.We are all giving each other support ,tips ,help and who knows the info we are digging up may even help the neuroligists.
Keep Smiling and Posting
Mike

[Marianne]

Hello Mike and "Company",

It's just amazing how little tidbits we hear from our doctors start us up doing our own "research". I've got lots of topics to discuss with my doctor in September. I'm even going to ask him if he knows of Dr. Bain over in the UK. Since my physician was rated as one of the top 10 doctors in New Yorker magazine, surely he must know other physicians in his field (neurology) even though they are not Americans.

Mike, if another OT meeting is held (in the US), I would come if I got up the nerve. 3 years ago (when I thought that my OT could hold me up) I traveled by plane to Florida to visit my Mom. I left NJ early in the AM so there were no waits on the security line. However, on my return I left FL in the early afternoon and when I saw the lines at security I almost fainted. I should have asked for a wheelchair right then and there, but you know our pride. Well I stood and stood on the line and by the time I got to my turn, my heart was racing and the security guards could see it on my face. I don't know how I managed but after going through they saw my great discomfort and asked if I was OK. I told them no but that if they gave me a chair it would help. They offered to take me to the gate in a wheelchair, but pride set in again and I made the short walk to the gate. I promised myself that from that day forward, if I ever had to travel by plane, I would request a wheelchair, from the curb to the boarding gate. Like you, my OT has now progressed to a point where I can take a few steps at home and then sit but when I venture outside the home, out comes the scooter. Like one of our other OT buddies, I have a stool in almost every room of my house.

I have resisted the use of walkers and scooters because of my pride, but I'm not going to let myself be taken over by this OT so even though I am using a walker or a scooter, I am still the same wife, sister, daughter and grandma.

Stay well and in good spirits!

Kaylie

[ALC]

Hi all,

My family history includes essential tremor, epilepsy, and restless leg syndrome - several family members. I'm the only one with OT. The diagnosis letter from Yale to my GP documents multiple recorded cases in medical journals of a familial connection between RLS and OT. My Yale neurologist told me that the current research indicates that OT is a spontaneous genetic mutation and that I have probably had it all of my life. That's why it's unlikely to be passed on to children. I am now 44. When I think back on it, I remember many, many years ago having leg tremors as a symptom of severe stress. But the threshold for the tremors continued to lower until the point that they are always present, just worse with stress.

I have not heard anyone mention having completely disabling moments. I once (stubbornly) climbed up a lookout tower with my kids on a vacation. I thought going down slowly would be easier on my legs. The muscles cramped up so much that I temporarily could not move. A rainstorm hit and my family ran for cover in a nearby building. By the time I had limited movement and got myself inside I was drenched to the skin. Humiliating. But lesson learned! Now when I climb anywhere I have my kids go on ahead. When they give me the "all clear" I literally run down the steps and it seems to trick my OT. I end up tired but not paralyzed. Or I just waive from the ground

BTW, I take .25 mg of clonazepam three times a day (7 months so far) and it has literally changed my life. I don't know if I'm in the honeymoon stage, but I was deperate and it helped so much. Doesn't get rid of the tremors, but takes the edge off. It has improved my speech, since I also have essential tremors of the tongue and jaw. I do not, at this dose, feel a change in personality or tiredness. There are many posts on this site that are anti-medication and based on those I was very reluctant to take any - this is the first prescription I have taken in my life. If you give it a try you can always opt out if it does not work for you. My Neuro also said that response to this medication is also part of the diagnosis and a way that they can confirm that there is not something else going on. It's great if you can get by without it, but I just wanted to report that so far it's helping me. I'd love to think it will last.

Amy

[Chris]

Hi Mike and all
I guess I must be different but there are no tremors of any kind in my family. No one has thyroid problems that I know of as well. About 15 years ago my family doctor did mention to me that my thyroid was a bit slow and put me on meds for about a year. I didn't really notice any difference and he subsequently took me off them. I don't really think I have a problem tho because everytime I have lab tests it seems to be fine. I do have a weight problem which I have been working on for the last while and it is really slow going. I have had a weight problem most of my life but has only been harder to deal with since I have reached menopause. That is also when I first started really experiencing my tremors.
If there is another meeting in the U.S. I would really do my very best to attend as long as it isn't between the middle of April to the middle of May. The meeting at the end of April this year was unfortunately the worst timing for us and both my husband and I really wanted to attend. He is a big support for me and we really would like to attend together. It would be really nice to meet in person. We are on the west coast of Canada but with enough notice could pretty well go anywhere in North America. I really enjoy reading all the posts so keep at it.
Chris

[jolarson]

It is great that so many are posting. It gives us all some clues that maybe our doctors have not mentioned. I am lucky to be healthy except for the POT even though I will be 80 next month. If I didn't have this stuff I really would feel the same as I did when I was 60 or less. But I have asked the doctors at UCLA if it could be possible that having bilateral hip replacement at 69 (both hips replaced at the same time) could have brought this on. They all say no in addition to my orthopedic surgeon. I do remember having moments before the surgery of not being able to stand occasionally but not even giving it a thought other than I must just be getting old. But I still wonder if there is a correlation since it was a traumatic surgery. I also think all our doctors are just getting the information from reading the same material that we research on the internet. It would be wonderful if they would read our posts on this site for insights as to what we all go through and experience. I am hoping Kaylie that when you see your doctor in September and you take your lists of complaints of OT that maybe he'll have some answers. I take my lists to UCLA and they really are trying but just giving me other meds that I have terrible side effects with. I am leaving next week on a trip where I will be changing planes etc. and then being in a situation at a convention where standing is almost all one can do. Obviously I have great anxiety and am using a wheelchair for the getting on and off the planes and those provided at the convention site. I cannot let pride stand in the way of enjoying the moments. But it really is a test for me to see if I ever will do it again. I have my handicap tags that Jeff helped me with and that will be a great help. Keep smiling........................

[ALC]

Jolarson,

Your post reminded me to mention that the minor occasional tremors I had earlier in my life became disabling only after emergency surgery. I've always believed there was a connection. April is a difficult time of year for me, too, since I work full time. But I am definitely interested in attending a second conference. There seems to be a lot of US east coast members and Columbia Presbyterian in NYC and Yale seem to have interested neurologists...

Amy

[stella R]

HI
I too have thyroid disease.
Also 5 of my sibblings also have it.
One of my sisters had to have a tumer removed from hers.
One would wonder if there is any connection to O T.
3 of my sisters have tremors also.
stella

[Marianne]

Hello Stella: Thyroid disorders, Graves disease, etc. are conditions starting to pop up in our lives. The last time I saw my neurologist in May, he ordered thryroid function lab work. I will see him in September and you can be sure that the topic of thyroid disease and the medication many of us take to control it comes up in the conversation.

I will post again after I see him on 9/15.

Take care,

Kaylie

[MikeS]

Hi Everyone
I have been in contact with Richard in England and he has been getting a lot of info about vitamin B12 .Hopefuly it will all appear here soon.
Another question I have now started to get a lot of aching in my legs especially after walking when it starts I begin to stumble and have to find somewhere to sit quickly I was ok till a few weeks ago I could walk and didnt need to stop and sit Anyone else lucky enough to have this added bounus?
Keep smiling
Mike


information on B12 from Andrew:

Hi,

I joined yesterday and my name is Andrew.

I’m 44 and have had OT for 5 years.

As you can imagine I have been down the route of MRI, EEG, EMG, blood tests, etc.

I have tried Parkinson's and anti-epileptic drugs but found them to have too many side effects.

My wife heard about vitamin B12 being useful for other shaky illnesses, and for me this has worked really well increasing my quality of life from 50 to 95%.
My consultant Peter Baine says that there is some anecdotal evidence for B12 helping some OT sufferers.

Swallowing B12 does not work, but I found that under-the-tongue (sub lingual) B12 in high doses works well and really quickly (in about 2 hours).

I take 4mg (4 milli grams or 4,000ug micro grams) a day works for me (2mg in the morning and 2mg at night). Recommended Daily Amount (RDA) is 1ug micro gram.
I’m told that there are no known side affects of high dosage B12, though it can be a slight laxative for some people.
I use Solgar 1mg sub-lingual tablets (about £18 for 250 tablets) from health food shops or online.

Interestingly enough, B12 deficiency has a high overlap with OT symptoms. See Wikipedia.
My B12 blood level is 3000 (normal 50-1000) and there is some anecdotal evidence that high B12 levels in the blood can also indicate B12 deficiency. But I am assured that this is not the case for me.

Regards,

Andrew

[Marianne]

Hello Everyone::

Mike, You mention your legs aching. I do get lots of aching in the legs but only when I over exert myself and stand too long, e.g. when I try standing in my walkin closet looking for something to wear, trying to groom my flower beds on my front lawn, standing at the kitchen counter trying to pour coffee, walking over to the fridge to get the milk and counting out my meds for the day. The coffee preparation and counting my meds out doesn't take long and is no problem for those who do not suffer from OT, but for me it seems like a lifetime before I can sit down. Sometimes I can't even finish doing any of the above unless I first sit and rest for a while. So, in addition to having to deal with tremors, I know that if I "over-stand", my legs will start to ache as well because I am forcing myself to stand.

On another subject, I have a question for all of you. Since many of us are getting more and more immobile, does any one have suggestions on exercising? Walking used to be mine and although I am overweight (always have been) its getting worse now. I am watching my diet (underactive thyroid doesn't help the weight). The odd thing is that I eat about 1/2 of what I used to consume, yet because there is no exercise, the weight continues to climb. I have a Pilates machine but have not used it in a while; I thing I'll pull it out and try a few simple exercises on it and see if I can manage them.

I'll look forward to your suggestions.

Take care all,

Kaylie

[Chris]

Hi Kaylie
I too struggle with my weight....have done most of my adult life as well. When I follow a stict weight loss program such as Weight Watchers I find it works somewhat but you are right about needing more exercise. I have a set of walking poles which really helps as when you go for a walk you get a full body workout because you are swinging your arms as well. They don't really help with the tremor when you stop walking but I feel more secure when I am walking. I try to get out for about one half an hour per day and I do feel better. I get a lot of leg aches too when I stand too long doing anything.....I have now put a stool in my closet so I actually have time to think about what to wear. I have stools and chairs all over the house for most of my daily chores and we now have lots of benches in the garden. In fact one of my friends asked the other day if I actually sit on them all. I couldn't get things done without them and my trusty garden cart.
Hang in there. Chris

[gloria]

Hi! everyone: In answer to Kaylie there is a form of exercise that I have gotten a lot of positive comments from OT friends throughout the years and that is Yoga. If you go to the upper right hand side of the forum pages and in the Search box type "chair yoga" you will find a posting from my daughter-in-law Beth about an online free chair yoga instruction. Also, if you go to http://www.Amazon.com and type in "chair yoga" you will find a number of DVD's you can order. Yoga addresses a calming effect on our stress driven OT through proper breathing, posture and overall good health. Joining a Y facility, for swimming or if they have any programs for the disability challenged is another avenue. Mike, your inspirational question" How is everyone?" is now up to 7 pages of responses! This is what we are all about helping and listening to each other. We are also giving the medical community a closer look at our disorder. I'm very proud of our OT family. Gloria