MND concerns, can't think straight

[MyHeadHasGone]

Hi all, been sent here from ALSforums

In Jan I got a neurologist appointment on the NHS, my mum has MS and I know the symptoms. However a few months later I started twitching started in the thumb and moving all over, checking online was the worst decision I ever made, hypochondria runs in our family and as it turns out I'm no different. I read the FAQ on ALSForums all the time for reassurance but it was so hard to concentrate on anything in my life.

One month later I paid for a private consult with my mum's neurologist, he's been on TV and highly regarded so I knew I wanted to see him even if it cost me £250. The good news is that after my consult he told me that my reflexes are normal and my plantors were flexor. He would not let me go private since he believes all my tests will be fine but scheduled another blood test, nerve conduction study and brain MRI on the NHS mainly to reassure me. He thinks I have BFS and nothing sinister.

A few weeks after my twitching is still present but I noticed that sat in a car seat/kitchen chair I absolutely cannot move the inside of my left calf, but I can my right. I skateboard and play football and my right side is my jumping side despite being left footed. I scheduled a visit and got seen by an NHS physio. He determined that I shouldn't worry and I have functional weakness since I can calf raise and it's just the inside of my calf that I can't move. He said that if I do calf raises that should bring back the neurological link in 3-6 months. But when I got home this just started my anxiety off again, what this is the first muscle that's gone and my other calf muscle is taking over? Could I always not move this calf? This sounds like the wifi signal being lost analogy used in the FAQ.

I enrolled in steps2change, I've just completed the second week of CBT for general anxiety, which I'm taking seriously. I'm scared and annoyed with myself, sure I noticed my calf weakness after the neurologist consultation but he did clear me. I passed every test! I'm waiting for the nerve conduction study now, I've had no date on when this will occur but I'm struggling to focus some days. Debating whether to make another private consult but he has already told me I'm fine, and I know how good he is and how much he's helped my mum. So I also know that I should trust him.

[MyHeadHasGone]

I'm slipping into worse health anxiety now - my left calf is twitching non-stop and it's one of those twitches you don't feel, i only noticed since I was laying down and my mattress was vibrating.

I've finished my group CBT for general anxiety and now I'm moving onto one on one therapy which hopefully should happen soon. My last post talks about how I couldn't move my calf in a sat position but after a few sessions of trying, it's like my body figured it out.

I have a phone consult with the same private neurologist but through the NHS this time in 8 days. Then we'll determine what to do further. It's been just under four months since I noticed my twitching and I haven't lost any ability to move any body part which is a good sign obviously. My body likes to pick a part to twitch lots of a short space of time for a few days, I was checking my left arm maybe around 100 times a day for a minute at a time to make sure it doesn't do those constant twitches I've read about that you can't feel and you can't stop.

However just now this is what my left calf is doing and I think I've just had my first panic attack, it's been twitching by itself now for 10 minutes and just keeps on doing it, I'm scared out of my mind since the reading I did a while ago at my worst says these are the ones to worry about. I don't have any foot drop though. I feel so alone and weak right now, I don't know how to cope or what to do. The CBT I did was to set a worry time which worked for general anxiety but I'm not mentally strong enough to use it against this health anxiety, like I need more techniques

[niknakx]

Hey, I totally understand the fear. I’m currently going through the same thing at the moment and I know it is a debilitating fear. I just wanted to let you know that I noticed the same thing with my calves a few weeks ago and freaked the hell out. However, I read more and more from people with BFS and they all said that their calves feet where really common places to have twitches all the time.
What made me feel better was the other day I was lying on my bed watching my leg muscles twitch like crazy. I was freaking out. So I called my boyfriend over and got him to lie in the exact same position. And lo and behold he had twitching in the exact same place. Also tiny twitching that you could feel but only see. He has also shown me his foot twitching as well to try and calm me down.
I know it’s hard but trust me when I say most people also have 24/7 twitch in in their calves that they can’t feel or notice because they aren’t super hyper focused on their bodies like we are.
If you focus on any part of your body for long enough you will start to feel things. Like if you focus on your finger for enough you will eventually feel your heartbeat in it.
I wish you luck with your neurologist appointment. I’m am certain you are absolutely fine. Keep fighting.

[MyHeadHasGone]

Thank you for the kind words!

I lost control of my self really when it happened and started tensing the hell out of my calves and my left one in particular is still sore now! I do feel a little better about it after reading, and I should mention that the twitching did stop after 30 minutes and didn't start again.
Unfortunately I have tested positive for Covid and have lost my sense of smell and taste. My father who I moaned at for being hesitant with the vaccine has also got it and never did get the vax whereas I've had one dose. I feel almost like I'm on the Truman Show and this is all for someone's entertainment. I feel largely fine, like a slightly worse cold or flu but obviously I can't help but worry about my (idiotic) unprotected father. We both started feeling ill Wednesday so fingers crossed the worst of it is now over.

[MyHeadHasGone]

Good news! I've had an EMG today. The clinician has said that my neurologist will offer me a report but I tested perfectly, he sees nothing at all that would suggest MND. There is no degeneration or any proof that nerves have had to grow back.

I've been getting new ones recently in my jaw and around my face, but now I know it's not serious. I'm fully aware of the incredibly rare cases of a clean EMG before testing dirty. I've been twitching six months now and had symptoms since January so I'd like to think that I'm fine. I don't want to fall back into HA by thinking these things, the odds are in my favour. I'm still twitching now a little, but so does my sister, mother and father. Mine are just more frequent.

I had to walk to my MRI because of the fuel crisis a few weeks ago. It was only around 3.5 miles but my calves were firing non stop, it was bad. I was very anxious about reaching the MRI on time (and I got lost!) so I think that also contributed. This time I had to walk back 6 miles from the hospital after my news and nothing! I've still not had my MRI results back but I presume that means nothing was wrong. I'll get my full report in a few weeks but I start my new job Monday. I'm now focusing on putting all of this behind me. I genuinely didn't know what results I'd expect from the EMG, I got overwhelmed with emotion and had to apologise for crying in front of the clinicians when he told me how I tested. I do feel like an incredible burden has been lifted from me and I can move on.

I just wanted to say thank you, reading everyone's stories did help, as well as tell me just how serious mental health is. Soon I start my one on one therapy, so I'd love to work on that to help me for the future. Keeping my mind occupied really helped me either not notice or got rid of my twitching. I'm someone who loves alone time but I was actively trying to spend as much time with friends and family because I wouldn't twitch. Maybe this can help someone here.

[niknakx]

I’m so happy to hear your good news. I hope you have a very happy and healthy long life! Congratulations on wonderful results!

[HopefulforBSF]

That’s great news! I hope you can move on from this now! There is no reason anymore why you shouldn’t be able to, congrats

[MyHeadHasGone]

So some news. I've had my MRI results back. I've just been copied into the correspondence from my neurologist to my GP. It's a bit concerning. It reads as follows.

"Cranial MRI scab was fairly unremarkable with no evidence of demyelination. Spinal MRI scan showed multi level degenerative changes, worse at the level L5/S1 where there is a slight compromise of the left S1 nerve root"

So until I speak to my GP or neurologist I'm really worried! Multi-level degenerative changes sounds absolutely awful! I've started a new desk job and I have noticed my neck has been stiff for a few weeks and my left second toe often gets an electrical shock feeling. I guess I'm in the wrong subforum now since I don't think it's MND/ALS but I'm genuinely concerned

[kyllikki]

Hello! Do Not Panic, I know exactly what this is (I think!) because I have it too. :) Here's what it says in people-words, not doctor words:

1. You don't have MS (bain scan showed no delmyelination)
2. You DO have a few dodgy discs in your spine, worst at the place that gives people sciatica ("multi level degenerative changes, worse at the level L5/S1 where there is a slight compromise of the left S1 nerve root".)
This would match your description "my left second toe often gets an electrical shock feeling" perfectly.
Look up "L5-S1 dermatome" on the internet if you don't believe me. The weird "outer side of leg" feeling, the twitching, and the electrical shock feeling all track exactly against an impingement of the nerve at this disc.
I know this, because I have it too. :)

Good luck and ask them for some physiotherapy!

[MyHeadHasGone]

I just wanted to thank you for this reply to me. This definitely reassured me as the doctors could only get back to me last night, which is a very frustrating wait.

The GP who called me not only told me it was very common but also has experience in this as she also suffers from it. I have been referred to orthopedics and will be undertaking physio, which is fine by me, I have done this in the past with the torn meniscus in my left knee and I know it works. My GP also had an injection which will be an option for me too if physio doesn't work.

I was asked if I had any signs of sciatica, which I don't. I did tell her I do often get a stiff neck and sometimes that electric feeling toe/foot. She seemed surprised by this. I was mostly worried that I'd have to give up playing football and skateboarding, but I don't have to and being active is encouraged!

I got woken up by twitching in my dream, and I was twitching in that spot when I woke up. I do still get twitching but it does seem less than before. For the most part I feel on top of my anxiety. I haven't had my report back from the EMG but I know it won't tell me much more than what I was initially told when I had it done - perfectly normal.

[MyHeadHasGone]

Hi all,

I wanted to write an update because I'm currently struggling a little bit. I mentioned above that I had a physio consult. It seems I was poorly informed by my GP as the back specialist that I was referred to wasn't a physiotherapist, and just talked about how too many people get MRIs and I shouldn't worry. She also was not sent my MRI results, so I felt very let down by the system.

I have since then completed one-on-one mental health therapy - CBT. It was a lot of homework, but it did help somewhat. However, now that it has finished I feel down because I no longer have a therapist to speak with. I would have to self-admit to the service again which could be months.

I'm still twitching to this day, but I had some good news, my EMG results returned and my 'Results were fairly unremarkable'. Great news! Except now for the past three months I cannot walk for even 3 minutes without pain. My left top of ankle, and my muscles that control lifting my foot up (around my shin) become very painful and tight. This has really set my anxiety back, this has been going on for a couple of months now but the duration that I can walk is getting less and less. So much so that I'm trying actively to stop thoughts that I have upper motor neuron disease, that couldn't be picked up on the EMG. Curiously, my foot absolutely wants to give up on the 3-5 minute walk to football on a Monday night, but I can play just fine. There's a mixture of walking, but also running on my toes. I even walked an entire 18 holes of golf which lasted roughly 4 hours with no pain. I'm hoping that this is 'All in my head' but it's becoming increasingly more difficult to believe this. Who can't walk for more than 3 minutes? My mum who has MS can even do that.

[kyllikki]

Sending you a PM because I think if I post one more "Oh I get that too!" it'll just sound weird. The good news is we *both* can't have a ridiculously rare disease manifesting in a nonstandard way! (and as an aside, given that I do have a case of limited, genuinely documented, truly neurological-based failure, I'd vote for me being it, not you :P )

[MyHeadHasGone]

I'm really struggling again tonight. I have been going to physio for my leg, and I'm going there tomorrow but my leg has not improved, I can only walk for bursts up to 2 minutes before it tightens up and it's increasingly painful to lift my foot. I've gotten back in touch with my neurologist, I did want a private consult but it's coming through the NHS which may take some time.

I've been feeling my forearms tighten randomly when doing things, what has tipped me over the edge today is that I was trying to put my football boot on (because I'm on my toes, I can run and my leg doesn't hurt, unlike walking) and my left arm was super tight and painful. I couldn't replicate it and remembered that I shouldn't test for the sake of my mental health. I've gotten back home and obviously tested because I can't help myself and I'm probably at only 50% strength in my left finger. My worst area feels kind of 'weak'. I must admit that I've been feeling like getting toilet paper off the roll was a little different than usual, but I chalked it up to just thinking about it for the first time.

I'm hoping that all of this is caused by the compromised nerve in my back but no professional so far has even been concerned about it. So I'm scared, this might be the worst point I've faced. I can't stop thinking the worst, I have no one to take care of me if the worst were to happen. Yes I'm lucky that I can move everything and no part of me has failed, but the bad thoughts have taken over.