Low mental strength and symptoms

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MyHeadHasGone

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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.
 

lgelb

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That is a large Vitamin D dose, with potential harms. The notion that synthetic vitamin D supplementation will prevent or ameliorate MS, though of course it is associated with less natural sun exposure, is questionable, as per the linked review. And genetic risk with MS is low.

I see no reason to worry about ALS, but certainly reason to seek treatment for health anxiety, which can improve your life regardless of any other disorders you acquire in future.

Best,
Laurie
 

MyHeadHasGone

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Thank you for the reply, sorry I didn't mention that I have such a large dose of Vit D because I had a blood test that showed that I was deficient, it was the only abnormality in my test. Feels like it might be genetic as mum is currently on 20,000 IU vitamin D tablets as well. I've also spent the better part of 14 months inside now, so I need to make an effort to go out more.

Thank you for your thoughts and reading them has made me feel better. I can assure you that I will be taking therapy for health anxiety very seriously. I'd like to think I'm a very rational person but as soon as something happens to my body my brain goes into overdrive! Such as the stomach issue I mentioned above, apparently we have a large vein running down through the middle of our bodies and you can see it pulse when laid down. But seeing my stomach move made me worry so much more than it should have. I'm genuinely excited to start therapy and you're absolutely right, it will improve my life.
 

MyHeadHasGone

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Hi all,

Today was my rescheduled neuro visit. It hasn't been a long wait but unfortunately I fell into the trap of looking deeper on here and found the extremely rare cases of twitching being the first symptom. If any other CIBALS visitors are reading, do not do this. Eventually you'll find something that confirms your own bias and it'll be your mental downfall as it was for me. This is already a very rare disease, the odds are in your favour.

The neurologist is not only my mother's but also a professor, he's been on documentaries here in the UK and when I learnt it would be him, I was happy to go private. He did an entire body checkup on me, he tested my reflexes in arms and legs, which were both normal. He did some poking and scraping with what looked like a thumb tack, he looked at my body at rest, stood up. He did all the tests I was doing to myself to see if my body was working (walking on toes and heels, touching nose with eyes closed, balance test stood on both feet) he even took my blood pressure. I have an entire diary of symptoms I did my best to show him everything. For any CIBALS visitors I had
  • Started with burning headache, followed by burning legs, shoulders and arms
  • After this largely went away I had creepy crawling feeling in legs, slight tingling
  • Twitching started one night 2 months later in thumb, next day went everywhere, mostly one pulse but very rarely a few pulses. No more tingles, only very rare burning
  • Some fingers and a toe move side to side by themselves, can really feel the toe move
  • Feeling of too much blood moving around body/really strong pulse, moves entire stomach and can really feel it in a lot of places
  • Weird almost electrical jolt in elbow region when doing press-ups (likely poor form)
  • Blood test revealed low Vitamin D - prescribed 25,000 IU tablets for 3 months
He asked me what I thought it could be, and since I only know MS through mum I said that, and when google said MND/ALS i just wanted it ruled out. He told me that as I have no loss movement, and my symptoms months before started with sensory nerves he assured me it was absolutely not MND, and not MS either. He even refused to test me privately as it'd be a waste of money. He is going to test me further on the NHS but again he said they'll all come back fine. It's likely BFS but he again reassured me I'm in good health. He did insist I should go through with my mental health therapy, I admitted it may be a real issue.

I feel a little stupid, firstly I don't want to fall into the trap of what my mum (unfortunately rightly) did was question the neuro and insist something is wrong. I'm twitching now but when my anxiety dies down they may well do too. Obviously nothing can be ruled out completely without testing, I don't even know what testing I'll be getting but if the best neuro in this area says you're fine, you're fine!
Mostly I feel stupid for coming here, I've been bothering legitimately ill people WHILE I'VE BEEN TAKING UP SKATEBOARDING AGAIN, how can someone be worry about MND whilst skateboarding in the daytime? I may return to post again once I get around to being tested but I'm healthy, I do trust the professor and the last thing I want to be is one of those people who think they have something for years, I've even seen it on here.

Thank you for taking the time to read and reply to my post, I wish you all the very best.
 

MyHeadHasGone

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Update -
My mental state has relapsed. I'm hyper aware of my body now and I noticed that I can't tense my left calf when sat down on a chair with my feet on the floor flat. The right calf I can tense the side of my calf in this state. I didn't notice this until after my neuro visit so I booked a physio visit at the doctors. I explained that my right calf is my "jumping" leg when I skate, and it's also my standing foot in football, so having uneven calves could maybe be explained (even though i've only just started skating recently again). It was determined that I have functional weakness and I should skate the other way and do calf raises and I may get the neurological link back in 3-6 months. I can move my left calf in all other situations, it's just this extra side of calf movement I can't even figure out how to move it.
I got a letter back from the neuro and I'm having another blood test, nerve conduction studies and a brain scan but it's only for my reassurance (so I can move just fine, but I didn't know about this calf issue). I also had my first group CBT session. Unfortunately one of the tasks was a muscle tensing task. I had to stay behind and tell them I can't do that because this is absolutely going to affect me mentally.

Should I be worried about my left calf? It is like the FAQ says, it's like the wifi signal has gone and I have nothing there. It is also smaller than my right but that makes sense to me why. For reference I really can stand on tiptoes and heels and as my letter says my reflexes are still normal and my plantars are flexor.
 

ShiftKicker

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Hi there- it really seems like the anxiety is getting the better of you. This forum is not up to the task of reassuring you if you can't believe the expertise of a highly regarded neurologist, previous replies here, nor your doctor. Please understand that we are not unsympathetic but we do not have the bandwidth to provide you with the type of reassurance you are asking for.

There are some terrific online resources out there for when your CBT sessions seem insufficient- the folk on No More Panic forums are great at offering peer support and many have been where you are right now. Please use them to lean on when you are looking to get some reassurance as they are able to help you more than the folk here can.

I am closing this thread. Please do not open another.
 
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