Just wondered if anyone here has been diagnosed with the above, must say its completely changed my life.Writing , computers, eating in restaurants (or at home) would be good to share and maybe exchange tips?
You had lots of views… but no replies… so, I guess none of the Forum have been diagnosed… so far.
Would you like to tell us a little about this illness…how it was diagnosed…and … perhaps… how it affects your life…
I was diagnosed by a neurologist.
I should have called it Essential tremor.
It is what it says on the box, starts with slightly shaky hands, gets worse, now I can’t write, eating is difficult.
Has now gone to head and…only slightly, legs.
I don’t know anyone who has been diagnosed with this horrible illness. I have looked it up on Internet and from the data I have read it can affect people in their 40’s upwards.
I do hope that you are receiving treatment and advice, as you say talking to someone who is affected would be of great help to you.
I advise you to tap ‘essential tremor forums’ into Google and you will see that there are several groups there. Maybe try joining some and see what that can give you in the way of support and tips.
Good luck and warm thoughts …
Sounds a little bit like Motor Neurone Disease, which my mother had.
Yes, you need all the support you can get.
I have it, since my teens but it’s got progressively worse in the last 5 years - I’m 61. It affects my hands only at this point, thankfully.
People, of course, get very confused about it and think I must be a drunk or a nervous wreck. It’s embarrassing at times but more of a nuisance and frustration normally.
You can join more than one group on Facebook for support. Have you seen a neurologist in France? Deep brain stimulation surgery has helped some ET sufferers.
Alao, have a look at the International Essential Tremor Foundation (US Based) for lots more information. Wish I had tips to share but I haven’t figured out how to handle it myself!
Essential tremour is really nothing at all like MND, or ALS as we Americans call it. It might worsen over time (more pronounced tremour, affecting fine motor skills) but it is NOT fatal or even life-threatening. It is linked more closely to Parkinson’s than anything else, but without the severe problems of Parkinson’s. Some studies also show a slight correlation (not causation) with early onset dementia but there is no proof of that.
Like many “quiet” conditions, ET has not been studied very much, even though it’s estimated that between 5 and 10 % of the population suffers from it.
Good news to learn that ET is not life-threatening…
Thanks so much for all your info and for taking the time to reply.
There is a medication for it which is helping somewhat, Primidone, helps a bit…
Thanks so much all of you who replied
Definitely will try a forum (and give up tea and coffee!)
We’re here whenever you want to visit… sometimes it is useful to chat amongst strangers… and, also, it is sometimes encouraging to learn of someone else’s experiences…
It’s very good that you have shared this information on this forum, Geri, and I endorse what Stella ànd others have said to you. Please will you continue to keep us on SNF abreast of your progress and/or hindrances so the we can share in them and, where possible, bring some sort of support and encouragement along the way?
Hi Stella, interesting you mentioned Motor Neurone Disease, I have a friend who believes she has MND but self-diagnosis as we know is a very dangerous thing. She is currently awaiting tests to eliminate other things. How did the early signs of the disease manifest themselves with your mum ?
Hi Peter… as you say, self-diagnosis is a very dangerous thing.
With my Mum… She simply mentioned to the Doc that she seemed to have something wrong with one of her feet… after she had taken a nasty fall on a stretch of pavement…
A stumbling gait is one of the first symptoms of various illnesses… and after certain tests, she was diagnosed with Myasthenia Gravis… she went downhill swiftly and was given 6 months.
Time went by with regular visits to a London Hospital for tests and observations (forget which hospital)… as her condition deteriorated they used her as a guinea-pig, as her illness was so rare in those days. (she was quite chuffed to be of use). By the time she died, 3 long years later, the lines had become blurred between MG and MND with the Docs favouring MND.
I would urge your friend to go for testing. Medicine has advanced so far now… and there is every chance her condition (if any) is NOT what she is worrying about. The uncertainty, the not-knowing… that can be hell on earth.
Thanks for that Stella, she has an rdv for electro nervy tests thingies (I can’t recall the technical term !) in a couple of weeks.
Hi again Stella,
The tests, which invlved needles and electrodes fom the shoulder to the fingers showed she has some kind of ‘blockage’ just above the elbow. She sees a surgeon in ten days to discuss the next step which may involve surgery.
Good news, so far then… Medicine is coming along in leaps and bounds…
Let’s hope the surgeon can offer a solution to the blockage…
Yes Stella, that would improve her quality of life if she was able to have full use of both hands. It’s a strange condition cos’ none of the docs or other medical people have seen it before !
Oh well, fingers crossed (pun intended !).
I am updating a little on ET, the primidone is a little help but on one half tablet a day I defy anyone to stay awake all day
if I am going out for a meal with friends I always have a glass of wine before, it stops the shaking but be warned, comes back later much worse!
Does any have info on this “Deep Brain Stimuli” (I think its called)?