Is this all in my head?

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bondisun

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Good morning, and thank you very much for taking the time to read my post. I will try my best to adhere to the posting guidelines for this particular forum and also keep this as brief as possible.

Throughout last year, I began to experience bad cramps throughout my body - but in particular in my feet, abdominal muscles and neck muscles upon exertion (yawning triggered the neck muscle spasms for example). The foot cramps were not provoked - but woke me in the night. I also noticed muscle twitching in the abdominal muscle occasionally on a nighttime when lying in bed. Didn't think anything of it. I also noticed that I was becoming stiffer - especially when going from seated to standing, and upon waking. I had a lot of tightness in my upper back which I put down to bad posture from being a computer user during the day for work.

Fast forward to October/November last year, I began noticing what I assume is 'perceived weakness' but also some pain on my left side, and had an exam with a physiotherapist whose only note was brisk reflexes. As someone who suffered from quite a lot of work stress, it was put down to that. Then, I started to feel what I can only explain as being 'creepy crawly' sensations in my lower right leg - which upon investigation was visible muscle twitching. After a few days, this progressed to my left lower leg (calf muscles) and over the course of that last 5 months has progressed to the arches of my feet, and other areas throughout my body including my shoulders, thighs, back of thighs and others.

I felt very anxious about this so consulted my GP, who did various strength tests and concluded nothing serious, however I did ask for the opinion of a neurologist to which he agreed. Whilst waiting for the neurology appointment, I experienced lots of sensory symptoms including burning in my lower legs and forearms, tingling and crampy type feelings, sometimes full blown cramping. These were put down to my anxieties - however, they were very physically limiting as even walking became difficult.

I saw the neurologist in March, who did a short clinical examination, listened to me talk about the muscle twitching and pain I was experiencing but told me that he thinks it can all be attributed to stress. He ordered an EMG and thermal threshold testing to be complete, however, these tests have been postponed due to coronavirus.

Since then, although still being able to function daily - I am no longer able to walk as far or for as long as I could. I am having to sit down and then get going again and am noticing that this is getting slowly worse. My left had has been tingling for around 2months now (more so my thumb and wrist) and is now shaking a little. I am finding it harder to lift things with that arm, like the kettle - it is causing me pain though I can still lift it up at this stage. I am also now experiencing more cramping - I only need to move my body in the slightest wrong way and something goes into a cramp. I am finding that by the end of the day I am physically exhausted from doing very little - and I am used to being a very active person usually.

Although I have not failed to perform any task, I am definitely struggling with my left hand and also with walking and my balance. Especially on my left side.

Twitching still apparent every day - mostly confined to legs at the moment but with odd zaps here and there. Trouble with walking (that pretty much everybody is convinced is perceived but you know your own body. I am struggling) and a shaky/tingling left hand - in particular my thumb are my main issues at the moment.

I am a 35 yo female just for reference.

I am awaiting the reappointment of the EMG, and understand that you are not doctors, but I was wondering if anybody could reassure me in any way or offer any advice on what I might do next to try and find out what is going on? I feel as though I have been labelled now with anxiety and stress and I do not wish for this to be a blanket placed over real symptoms.

Sending best wishes and thank you for reading.

I also had neck pain and experienced a worsening clicking/locking jaw over the course of last year which has gotten worse over the last few months too and I am concerned that this is a progressive muscular problem too - as well as the others. Thank you.
 

KimT

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You have quite a few sensory symptoms. Nothing sounds like ALS but a lot of it sounds like it could be fibromyalgia. I agree that stress can cause a lot of what you're describing but it certainly doesn't sound like ALS to me.

It's best to keep working with your doctors, get blood work done to check for B-12 and D deficiencies. If your pain and cramping continues, maybe seeing a rheumatologist could yield some sort of explanation.

In the meantime, cut down or quit caffeine, stay hydrated with water, eat lots of fruit and vegetables, stay away from junk food, and make sure you're at a proper weight, meditate, and exercise.
 

bondisun

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You have quite a few sensory symptoms. Nothing sounds like ALS but a lot of it sounds like it could be fibromyalgia. I agree that stress can cause a lot of what you're describing but it certainly doesn't sound like ALS to me.

It's best to keep working with your doctors, get blood work done to check for B-12 and D deficiencies. If your pain and cramping continues, maybe seeing a rheumatologist could yield some sort of explanation.

In the meantime, cut down or quit caffeine, stay hydrated with water, eat lots of fruit and vegetables, stay away from junk food, and make sure you're at a proper weight, meditate, and exercise.


Hi Kim,

Thank you for your reply, it's much appreciated. I had wondered about fibromyalgia too - but the muscle twitching is the thing that is of main concern to me, and the fact that my walking is getting increasingly more difficult. It is proving challenging to get any sort of medical help here in the UK at the moment due to Covid-19, but I will keep trying as I am really struggling so much.

I had a very severe vitamin b12 deficiency in my early 20's which was treated by injections at the time. They gave me another round of loading dose injections last month to see if this might be the problem again (as my serum result was 'normal').

I may need to schedule another call with my GP, although they are fed up and just want to rule everything as anxiety.

Sending best wishes
 

affected

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Great news is that you have no ALS symptoms presenting at all.
Have a good read here, reading through twice really makes a difference as there is a lot of information to take in there.

Your doctor is the one to keep talking to as that person has examined you and can best assess the situation. I know you don't think it is anxiety, but what if you went with that for a month and followed their advice to see if it makes any difference? Anxious people focus so closely they notice every single tiny thing and pile it on to evidence they are collecting.
 

bondisun

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Hi Tillie,

Thank you so much for replying to me - I really appreciate it a lot. I have read and re-read the stickie post as you suggested and you are right - I am not failing at any particular task (it is just feeling more difficult, which the sticky says is not indicative of anything serious). I do not have any atrophy that has been diagnosed by a doctor. I have brisk reflexes but I am also very anxious - which is a more reasonable explanation for that. I have a number of sensory issues which do not seem to be reflective of this.

I have spent the last two months doing all of the suggested by my doctors for anxiety - I am on medication and have completed a set of CBT sessions but I will continue to do that in the hope that I do get some relief for my symptoms and then perhaps I will need to go back to my doctor to find out what happens next.

Sending best wishes and thank you again for taking the time to reply.
 
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