Movement Disorders :: Benign Familial Essential Tremor
May 21, 2014
wanting to contact others who have the same condition. Sometimes it is genetically related or not.
View 4 Replieswanting to contact others who have the same condition. Sometimes it is genetically related or not.
View 4 RepliesDoes anyone that suffers from Benign Essential Tremor suffer from muscle twitching involuntary jumps and cramp in hands and fingers?
View 8 RepliesI'm 19 Years old and I have Essential Tremor.
So, I've been taking Inderal for the last 3 months and it's not working on my tremors. Have you had any experience with Primidone and, if so, can you tell me if it worked on you?
I'm 19 years old and I have ET and anxiety because of that.
I went to my second appointment with my neurologist and I told him about my tremors and my anxiety. And that the dose I was taking (10mg Inderal 3 times a day) was not working. I was feeling no side effects or improvements on my tremors and anxiety. So this time he raised the dose to 20mg 3 times a day and he said that If 60 mg per day doesn't improve my tremors It's not worth to give me a higher dose. So, I told him If he could give me some medicine to take in anxious situations. He gave me Alprazolam 0.25 mg to take only in anxious situations in a maximum of one per week, because taking it in long term can affect my mental ability.
So, let me ask you some questions:
If 60 mg of Inderal per day doesn't improve my tremors, it means that's not worth taking a higher dose?
There is something alternative to improve my tremors If Inderal can't?
There is any anti-anxiety medicine that's not too strong that could calm down my anxiety and I could take it long term? (I only need to take it in 6 months or less depending on how I'm adapting, because I'm going to work for the first time outside my country for 6 months and I will feel very anxious because of my tremors.)
Since my doctor prescribed me Alprazolam 0.25 mg in stressful situations to calm down my anxiety, can I take a higher dose, like 0.50 mg If I feel that 0.25 mg doesn't get me more relaxed?
Recently when I find it difficult to begin certain letters, such as 'a', 'v', 'r' and 'd', when I am writing. I am studying Physics, and so write a lot of maths. I have never previously had any trouble writing letters, and consider myself to have neat handwriting. I have tried different pens, pencils e.t.c, and worry this might have some link with Parkinson’s disease, which runs in my Dad's side of the family. I am a male aged 18.
View 1 RepliesAfter 18 months of symptoms and various medical tests for eg DaT Scan, MRI and SSEP
Just started on clonazepam and see specialist neurologist again in Aug, can anyone advise what questions to ask and has anyone with this condition tried clonazepam ? Was also supposed to start on propranolol but am worried because I have low blood pressure so will discuss this at next app.
I'm struggling to cope with having tardive dyskinesia and can't stop lip smacking/tongue movements every day.
It's so embarrassing, not to mention socially weird. I feel a real freak and don't know if I can cope with having this for the next however many years.
I have looked on many websites for discussions on this, then stopped because it didn't cause much worry, but only recently am I trying to find help, which is hard to find. I post and post and it seems that nobody has any answers or even cares to answer. It is a very big concern of mine. I have many anxiety issues, I developed borderline personality disorder, and also suffer from general anxiety, all stemming from childhood. I have also rocked myself to sleep since I could remember. (Which I don't remember much below age 12). I am currently 18, and never had a problem coping with my RMD as it was harmless and all around soothing. Even in public or talking about something I was uncomfortable with I would subtly rock(Didn't even know till bf pointed it out) But I am now currently 17 weeks pregnant. I had no trouble sleeping during the first trimester as I was tired all the time, but now I'm having troubles sleeping and I'm afraid my RMD will cause harm to the baby, as I am aggressively rocking my whole body from head to toe back and forth for literally hours. I'd wake up with knots in my hair from it. My boyfriend would be able to wake me up too and stop me as I do it subconsciously, but he now sleeps through it. But I have woken up twice from it, and it really worries me that it will harm my little angel. It generally when I have nightmares(Which I do almost every night or I just don't dream)..or when I am stressed I believe. I really don't know much about it but I will be talking to my doctor about it (but I'm sure she will just tell me to find coping methods), but I was wondering if anyone has had to deal with this and what their first hand experiences were & how they coped with it because counseling and meds are something that haven't helped and I really can't or want to take any medication now as I want my baby to be as healthy as possible.
View 4 RepliesI'm seeing a neurologist next week because of the above symptoms. I'm a 68 year old woman and my GP said it's the way my body is aging! I'm not so much worried (about for example Parkinson's) as intrigued. I know lots of people suffer hand and finger tremors but I am a bit unnerved by my hands and fingers moving very, very slowly on their own. As I stop typing for a moment my right little finger has raised itself from the keyboard as if it were being pulled but very very slowly. My whole hand will slowly curl and even my arms will move on their own if I am "at rest". It's probably something with no explanation but I wonder if anybody else who has been diagnosed with a neurological/muscular condition has experienced this symptom. I do feel as if I am trembling right through my body and my feet will also move independently if I keep still long enough. I don't seem to have any other Parkinson's symptoms.
View 3 Repliesi have been suffering from this debilitating Chronic disease all my life, I was diagnosed back in 2006 by a gene test. Ever since I was put on a disability pension. I suffer from recurrent episodes of high fever and pain in all my joints, my life is made of pain, and with at least twice a month sometimes even more often I get high flares.
nothing I was given by my GP that really helped. I may have few hours of the day at times that I feel normal, this is when I take advantage of the time to do housework chores. My husband who was my carer was there for me, helping me on my daily progress, since he passed away (15 month ago) on a stroke I have been suffering even more, emotionally and physically.
Since September last year, I have been chased by Centrelink, who's telling me that back at the time they accepted my application for the disability I didn't have enough evidence to become eligible for that and had had made a mistake, so they asked me to bring evidence from specialist to do so, it was the time just before xmas.
now everyone knows that to get appointments with various specialists take time. Before I was able to see one, Centrelink had cut me off, I have appealed, and now waiting for the tribunal decision. In the meantime I have evidence from some specialists.
but from the ones that I was gone through the government system to see a specialist in the local hospital, it 5 month for the first appointment, then 2 month to do ct scans and xrays. Now I've been waiting another 2 month hoping to hear from them before coming may which is my tribunal day in May 18. a Doctor called me this morning asking if I have left a message in the hospital about the results of the scans, he said, your scans looking fine, only the liver is fattened, nothing about my debilitating disease or if I'll have another chance to see the specialist so they can advice me about my FMF problems. I'm shattered and so disappointed, he hardly finished talking to me and his beeper was buzzing, he continued saying sorry, I have emergency and was gone. Where am I standing here? What kind of treatment is this, I've been waiting now for at least 7 month to see and talk to specialist and this is what I get. I need a written results for Centrelink and I'm feeling lost. I don't know what to do. This is just a joke. Please help me to understand and get some wisdom here as I'm lost in this government system.
My husband has this condition and has been on statins for some years now. His levels are now good, he hardly drinks but his diet is awful - and always has been. Basically red meat, pastry, cakes and spuds, preferably with fat of some kind. My diet is good and all the right foods are in the house and available. This year he has been feeling unwell - aching all over and very tired. His weight is good despite the diet though. He has lived 7 years longer than his father, and I would like to keep him for many more. I am wondering if the statins may be causing the problems and whether the condition can be managed by diet and if so how the heck do I convince him to change? He is due to see his doctor next week.
I have only been on Gabapentin for 6 wks. 100 mg. 1 x day. Do I need to taper off. From what I read, I don't want to continue or increase it. I have essential tremors and they have been a lot worse. Also, I have extreme fatigue.
I am a female 62 years of age who has suffered with FMF since I was a child of 8 years old - but not diagnosed until I was 45 years old. The FMF attacks mimicked several different medical conditions - first I had my appendix taken out at age 8 because of abdominal pains, then at 32 I had a hysterectomy because my "attacks" happened during my monthly menstrual cycle, then the attacks continued and mimicked gall bladder attacks - so I had my gallbladder out! At the age of 45 I was diagnosed with FMF when I made a trip to Israel and visited specialists in this area of expertise to finally get a diagnosis. It was a long time to finally get a medical diagnosis as most of my adult life I was told by doctors that it was stress related and that I should learn how to control the stress in my life!
I was hospitalized each and every month for at least 4 days because of the severity of the attacks and the dehydration of vomiting. Colchicine has kept it a manageable level for me and kept me out of hospital. After 17 years I am now getting side effects of Colchicine of numbness in my hands and feet. Now I have to find another drug that I can use in order to keep the FMF under control.
I have been diagnosed with Familial Hypercholesterolaemia at the age of 5, after around 30 years of battling with doctors over my diet. Up until now, my combined cholesterol has never gone below 7.0 (without statins which I took for a few months around 5 years ago - it went down to around 4.0), and doctors continually insisted that my diet was at fault.
After another round of insisting that I take statins, I refused and was sent to the lipid clinic, where they looked at my history and proudly announced that my diet was not at fault and it was hereditary.
They then insisted I go on statins, as in their words, I have nearly 50 years worth of <fat> lining my blood vessels.
They did no cardiac tests or ultrasounds or stethoscope on my neck, etc., to find out if I was "furred up", and they then referred me back to the GP.
The GP didn't get in touch with me, so I made an appointment to see him, where he put me on a low dose of steroid.
I asked him about whether I should find out if I WAS at risk of heart disease before he shoved me on them, as in my mind, if my cholesterol had been so high ALL my life, then why did I not have any of the associated symptoms of FH, such as early heart disease, fat deposits on eyes etc?
Also I have reduced thyroid function (not reduced enough to be treated under the current guidelines however).
So, a couple of weeks later, at a pre-op for an upcoming gynae procedure I am to have, I mentioned about not having my heart looked at in years, and the kind nurse did an ECG and listened to my heart with a stethoscope. I was told my heart was ok.
What I would like to know is, would that "OK" on my heart health be a good reason not to take statins, or would further tests need to be done to ascertain whether I am at increased risk of heart disease - other than my cholesterol level.
I have read recently that if your heart and vascular health is OK, it doesn't matter what your cholesterol level is, it will still lower your risk - is that correct?
I am interested in finding other people who have inherited high cholesterol. I was diagnosed when my late mum had several strokes and me & my 5 older
sisters were screened.
It was just my eldest sister & me (the youngest) who had inherited it. 2 of my sisters 3 daughters had it, and both my daughters. Does anyone else have such a strong family history of inherited cholesterol?
I live in UK & am currently on Ruvastatin 10mg.
I was diagnosed as hyperthyroid about five months ago. I am so much better now however the tremor in my hands and the muscle weakness in my arms and thighs doesn't seem to have subsided (or even lessened) at all like the rest of the symptoms. I am really worried that these are going to be permanent problems. Has anyone else had tremors and muscle weakness from this condition, and did it eventually go away or should I be preparing for this to be a lifetime issue? If yours did go away, how long did it take and did you need to take any particular supplements or do any particular exercises to help?
View 9 RepliesThe doctor told me that I have a fatty liver & they told me that I shuold take 'Essential Forte' a vitamin tablet. I couldn't get the tablet.Is it worsen the situation if I do not take the medicine?
View 1 RepliesI am a mature adult female, I drink heavily. I'm a functioning alcoholic. I do not drink before work or when I have an appointment. But after I'm done for the day I often drink to the point where I cannot remember the next day. I have developed a tremor, that's an easy way of saying it, I shake during the day. Even after I've had nothing to drink for 4 or 5 days it persists. This is something that I noticed with my mother, who was also a functioning alcoholic later on in her life. I noticed it later on in her life. I'd like to know, is this a given for alcoholics or should I be looking for a deeper meaning?
View 14 Repliesi am malaysian recently did my blood test and found out that my TSH within the normal range (1.8) but my free T4 was 26.33 (12-22). free T3 was not done. i am experiencing all the symptoms related to the hyperthyroidism such as palpitation, tremor, intolerance to heat, weight loss(from 78kg to 65kg), always hungry, muscle weakness.i went and visit my endo, he said since the TSH reading normal, so you are not having hyper and he discharged me. but i can realise that i am having all the symptoms of hyper. can anyone help me?what i should do after this?
View 2 RepliesDoes anyone have information about this type of angina? Mine is quickly getting more aggressive in nature and my most recent episode two days ago caused me to nearly pass out with the pain. I do know that it is caused by a spasm and it is generally considered a benign condition, but it is not feeling that way anymore. Please share any real knowledge you may have on this topic with me. I really hate to call the emergency services if there is something else I can do to alleviate my pain beyond using my nitroglycerine spray and chewing the aspirin.
View 4 RepliesI have a very large 5.3 cm multinodular goiter that is benign. After my ultrasound my Dr. recommended a Thyroidectomy. He received my Radioactive uptake scan results and now he can recommend the RAI. I have an appointment next week to discuss my options further with him. Anyone that has been hyper with a large goiter and had the RAi, would you recommend it?
View 10 Replies