MyHeadHasGone
New member
- Joined
- Jun 3, 2021
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
Hi all,
I'm a male, a few days away from my 34th birthday, living in the UK. My mother has relasping-remitting MS which she self diagnosed when initially doctors didn't think it was MS.
Apologies if this is long, I've been waiting for a neurologist since Jan 6th on the NHS. Initially this was because I recognised a couple potential symptoms of MS and I've had a brain scan before with a previous scare, I had pins and needles and a lot of burning, mostly in my legs and glutes. This subsided around April and I'd have one week of symptoms and nothing the next. Then on the 7th of May my thumb started twitching uncontrollably when I was trying to sleep. It was pretty violent, putting weight on it would not stop it and it twitched up to maybe 10 times a minute at most. Unfortunately I decided to research what was causing it and it made me more anxious than anything in my life so far.
Since then that same twitch hasn't reappeared, and especially not to that level, but I do get random "one pulse" twitches literally in every part of my body. Rarely it's more than one pulse and sometimes they're so strong they move the body part. The wonderful FAQ on this site has helped me mentally but hypochondria is rife in our family. I get set back all the time mentally, such as when my fingers or toes decide to move by themselves, or today when I noticed I have a persistent "twitch" on my stomach, you can see it when I'm laid down. I can't feel it happen but it's my only 100% of the time persistent body movement. I want to add that although sometimes my left side feels "off" like it's not a smooth movement I have zero weakness so far. Knowing about weakness has led me to test my body with little workouts each day and I must admit, I've only got better with each day. My only other concern is that if I watch football, or play the football video game, sometimes my leg my twitch, as if to make a tackle. Naturally as a bit of a hypochondriac I fear hypereflexia (although I do know only a doctor can diagnose)
I've had a phone conversation with my GP (PCP) and I'm on week 2 of a 3 month course of 25,000 IU vitamin D tablets, I have pushed for a private consult with my mother's neurologist which is £250 and on June 14th, although I don't think I can afford private testing. I've also got in touch with "steps 2 change" which is a mental health service here in the UK, my sister used this to undergo CBT to aid with her anxiety. My phone consult is at the end of the month, but going forward I feel this will help me as it's become apparent that I, myself cannot control my anxiety. I couldn't imagine what I'd be like under worse circumstances.
I keep a diary of how I felt each day, this will hopefully give some more information to the neurologist that I may otherwise forget during the consult. I read the FAQs here many times a day, I know that twitching without any other symptoms like failing limbs means I'm unlikely to have an affliction but I'm just so scared. I'll gladly keep updating if this can help other people also worried about their symptoms but I'd also like some opinions, on what I could do further to help myself and if my symptoms could by chance be ALS/MND.
I'm a male, a few days away from my 34th birthday, living in the UK. My mother has relasping-remitting MS which she self diagnosed when initially doctors didn't think it was MS.
Apologies if this is long, I've been waiting for a neurologist since Jan 6th on the NHS. Initially this was because I recognised a couple potential symptoms of MS and I've had a brain scan before with a previous scare, I had pins and needles and a lot of burning, mostly in my legs and glutes. This subsided around April and I'd have one week of symptoms and nothing the next. Then on the 7th of May my thumb started twitching uncontrollably when I was trying to sleep. It was pretty violent, putting weight on it would not stop it and it twitched up to maybe 10 times a minute at most. Unfortunately I decided to research what was causing it and it made me more anxious than anything in my life so far.
Since then that same twitch hasn't reappeared, and especially not to that level, but I do get random "one pulse" twitches literally in every part of my body. Rarely it's more than one pulse and sometimes they're so strong they move the body part. The wonderful FAQ on this site has helped me mentally but hypochondria is rife in our family. I get set back all the time mentally, such as when my fingers or toes decide to move by themselves, or today when I noticed I have a persistent "twitch" on my stomach, you can see it when I'm laid down. I can't feel it happen but it's my only 100% of the time persistent body movement. I want to add that although sometimes my left side feels "off" like it's not a smooth movement I have zero weakness so far. Knowing about weakness has led me to test my body with little workouts each day and I must admit, I've only got better with each day. My only other concern is that if I watch football, or play the football video game, sometimes my leg my twitch, as if to make a tackle. Naturally as a bit of a hypochondriac I fear hypereflexia (although I do know only a doctor can diagnose)
I've had a phone conversation with my GP (PCP) and I'm on week 2 of a 3 month course of 25,000 IU vitamin D tablets, I have pushed for a private consult with my mother's neurologist which is £250 and on June 14th, although I don't think I can afford private testing. I've also got in touch with "steps 2 change" which is a mental health service here in the UK, my sister used this to undergo CBT to aid with her anxiety. My phone consult is at the end of the month, but going forward I feel this will help me as it's become apparent that I, myself cannot control my anxiety. I couldn't imagine what I'd be like under worse circumstances.
I keep a diary of how I felt each day, this will hopefully give some more information to the neurologist that I may otherwise forget during the consult. I read the FAQs here many times a day, I know that twitching without any other symptoms like failing limbs means I'm unlikely to have an affliction but I'm just so scared. I'll gladly keep updating if this can help other people also worried about their symptoms but I'd also like some opinions, on what I could do further to help myself and if my symptoms could by chance be ALS/MND.