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DanGB

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Hello, I’m a new member, I’ve been reading the board for the last few days and am posting really to seek some info from people who are knowledgeable about ALS. Apologies this is a little long but any input is appreciated.

I’m a 31 year old man. I have had an eye twitch since the age of about 18/19. I can supress it for a while but I always have to multiple blink to feel “right”. The urge never really goes away, but at random times it is better or worse than others, I’ve never really been able to figure it out. It has been persistent to present day, although I would say, and other people have commented, it has improved in the last 5 years or so to the extent that I can control it better, and that other people don't notice it as much. It often feels like one eye is twitching but when I look in the mirror as far as I can tell it is both. There is nothing particularly pleasurable about this, it just feels like something that has to be done.

As a child I had a twitch on my nose where I found myself compelled to twitch the bottom of my nose from side to side. And I’ve always felt the need to scrunch up my nose or move the muscle in my nose, although the urge now is not as great, certainly one of my less prominent twitches, although unlike the eye, there is something almost pleasurable about this twitch, it feels good to do. I also used to have the urge to make a kind of single humming noise sometimes, but aside from occasionally when I'm in bed before I go to sleep I don't have a strong urge to do this any more. I have never really had any other vocal tic, so have never really considered tourette's as a possibility.

Over the years I have developed other twitches, some where I have the urge more than others. The eye blink is the main one that I feel most, but I have the urge to move my ears up and down. I didn't always have this and I can't remember when it started. As I've got older some twitches have developed and others have subsided. I used to have the urge to twitch my calf muscle a lot and the muscles in my buttocks, but this is now less frequent, although still present. Since February this year I've felt the need to tighten my neck muscles, so you can see the muscles through the skin. The urge to do this has decreased very slightly from a period of intense urges from about February to August of this year, but it is still frequent.

I've always had habits and rituals that I occasionally like to perform like scrunching up my toes and running my little fingers across the nail of the finger next to it, and rubbing my hands through my hair to my right, even when I know my hair looks fine. As a child I used to like to rub the top of my mouth with my tongue, and very rarely I still find the compulsion to do this. I have never been sure if this is indicative of OCD or not but it has never been something that has affected my daily life or a constant. I have a light tremor, more than most people, but this has improved from when I was 16/17, when it was quite pronounced to being far less noticeable now.

What has worried me recently is that I have developed a twitch in the muscle on my right arm, the one going down the arm below the elbow, it is controllable to a point, but causes some discomfort and tightness if I suppress it for too long, and I feel it, although to a lesser extent on my left arm too. The feeling is not pain, more tightness and a light dull ache, almost not noticeable, but different to how my other twitches feel. I also have the urge to twitch the muscle on my wrist, which I have never had before. This has only developed in the last few weeks and is worrying me that it could be the sign of something much worse. There is stiffness, mainly in the right hand little finger, which has come and gone over last few days but is particularly bad today and it feels a little numb. The stiffness isn’t in the left hand. I can pick things up and do things with the right hand, but there is a dull ache in the arm.

I know I should have gone to the doctor about my twitching a long time before (and I am booking an appointment in the next few weeks when I have time off work), but, and I know I shouldn't do this, after googling symptoms, I am concerned that the twitching in the arm could be related to ALS (we call it MND here in the UK), Parkinsons or MS. I'm aware the only way to get a proper diagnosis is to see my doctor, but could anyone help with pointing me in the direction to what this could be? Does it sound consistent with ALS?

My twitches are to a significant degree lessened by alcohol, although I do not drink frequently, perhaps once or twice a week, and also, when I smoked, cannabis to some degree. The exception is the eye twitch which is almost always there to some extent. Is this normal for other twitchers?

As some background I feel in good health. I cycle about 35 miles a week on average and eat a lot of fruit and veg. I am vegan, but have only been for a few months and even before that I didn't drink milk. I take supplements including multi-vitamins and vegan cod liver oil substitute, but I don't think change in diet is the cause of the recent twitches as I ate meat for the first 25 years of my life.

I have always suffered with what I'd call low level anxiety, it has never stopped me doing things, but I do get very nervous in certain situations sometimes to the point of shaking. I would describe myself as an anxious person, but it doesn't rule or ruin my life, I just know it's there. As an example I recently had to do a speech to about 200 people and before hand I was shaking, felt ill and could barely hold my notes, but when I delivered it, it was fine and this is consistent with how I generally feel, that I can do things that I am anxious about but they always turn out fine. I have only had one panic attack in my life, which was earlier this year and extremely scary, and have not had one before or since.

I have had periods of depression, but never severe enough to really affect my life for a period of more than a few days. I used to have more volatile mood swings until my mid twenties but these have subsided greatly and I feel much more in control of my emotions most of the time. I don't know if it is relevant, because my eye twitch started earlier, but in my early twenties for a two year period I regularly took recreational drugs such as cocaine and MDMA. However, although I have occasionally used these drugs since it has been at most a couple of times a year since I was 23/24. I smoked cannabis for a sustained period from when I was about 27-29, but have only smoked maybe 5-10 times since across the recent two year period.

Any advice or suggestions or indeed anything anyone has to say would be much appreciated, and thanks for taking the time to read. I do suffer quite badly from health anxiety so if I am being ridiculous please tell me to go away, I won’t be offended! (although I will obviously still get checked up by the doctor)
 
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Nikki J

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It does not sound like ALS/MND to me. Please don't worry about serious neurological diseases and go to see your doctor as you plan. I think you know this in your heart. If you REALLY thought it was MND you would not be waiting a few weeks until it was convenient.

Please do read the sticky for our take on twitches
 

Vincent

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First off, we are not doctors here so diagnosing is not our specialty. Having said that, nothing in your post sounds like MND. Twitching is so common that it is not a diagnostic symptom. MND is a disease of muscle failure. The nerves that control movement die. |When seeing your doctor, mention your concerns, but also mention anxiety, I think you will find answers there.
Vincent
 

lgelb

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Dan, there can be no doubt that:

  • What you describe is not MND
  • What you report is, however, treatable, to the point that you can feel better and control the "twitching" and urges to move to a greater extent

Print out what you wrote below, condense it into shorter, chronological form w/ time periods, frequencies and intensities, and bring it to your GP.

All the best.
 

DanGB

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Thanks for your words, I saw the doctor, she suggested it's very much time to get the anxiety under control. Best wishes to you all.
 

gooseberry

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I was going to suggest some help for your anxiety. Glad you are already getting it.
 
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