Hello from me..

[Tony1973]

Hello All,

Just thought I would like to say i've been looking around at messages and posts on this forum and what a wonderful group and site this is for information and support.

I'm currently waiting for Neurology appt. and although I know no one here is going to diagnose anything, i'll just put up my journey so far, so future people can see whats what if they also have the same in the future, plus for me mentally it might help as I'm struggling.

48 yo. I was a runner and cyclists but recent calf pain that would not go away and then achilies injury forced me to stop about 12 weeks ago and rest.
8 weeks ago , in the morning i got up out of bed and noticed my arms tremoring as I did, when under load from pushing myself up off the mattress - bending forward i noticed that my trunk caused a judder/tremor, so i decided to check my legs and leaning left or right and putting weight on them caused muscle to judder/tremor as well. When i "hugged" myself my arms and shoulders tremble. some vision issues as well.
My calf pain had gone by this time, but when i went to the GP the next day, they were worried about something and referred me to a stroke clinic where i had a CT scan.

I was in full panic mode and resting tremors developed in my arms and tingling in my face and lower lip. i hardly slept for days.

I went back the stroke clinic a week later and they told me the CT scan was fine - a junior DR gave me a full neurological assessment like finger pointing and visual checks and push/pull things and reflex check. There must have been something there, because she wanted to get me into an MRI scanner immediately - however it took another 2 weeks to get into the scanner.

my anxiety went through the roof - unable to sleep i got some tablets from the GP, however things got better with my resting tremors and they totally vanished. the lip one comes and goes. the tablets make me feel really twitchy and seem to enhance my tremors, but they do get me to sleep.

MRI scan came back yesterday after 3 weeks of waiting as normal.

so since then symptoms are - arm / leg / trunk tremors under strain. juddery motion of arms and legs, off balance turning , some leg "give" when walking and every few days my head/neck develops tremors under load too, if i look up at something my head begins to shake. vision wise i seem to be unable to lock onto something and focus for more than a few seconds.
BUT today i've now developed "fasciculations " in my leg muscles , both sides, not constant , 10 times a minute , and one in my lower stomach which is really annoying.
and last night as i go to sleep and dream about something my muscles want to do what i am seeing and twitch and wake me up....

i've had almost no contact with NHS over this whole period - GP's refuse to do anything until scans come back which has been terrible for me, and only ever have phone calls with them. I have managed to get a face to face on friday.

Currently my brain has locked onto MND and i'm spiralling into oblivion mentally -

i've phoned the Samaritans but just end up hanging up and crying
i end up crying with my partner almost 3 or 4 times daily
i told my parents little about it and brushed it off and they think everything is ok with a normal mri being shown.
i down the GPs tablets when i'm sick of being unable to sleep for 3 or 4 days in a row
i struggle to take interest in anything.
I have no appetite and struggle to eat.

so thats me so far.

i'm thinking of going private but there seems to be 3 weeks wait locally (newcastle is closest), so i might try further afield

thankyou for reading if you got to the end

best wishes.

[shelly21]

Hi Tony. Its a very worrying time when things are happening physically and not getting fast answers.

So now ct and mri are done you need a fast track neuro appointment. You have got bang on the g.p door.

But I waited 4 months to see a neuro on the nhs. If you do go private make sure you do your homework and ask out right if they have mnd experience.

In the meantime can you go on anti anxiety medication?

[PeterPan]

Tony1973 Hi, as you’ll know from reading this forum there are probably 101 things this could be. As you say you’ve ‘locked onto’ MND even though this is unjustified at this stage. Anxiety and ‘thinking the worst’ are common responses but they make life really hard for you and those around you.

My advice would be to focus on just one step at a time and to get help for the anxiety. As Shelly says, do your homework about which neurologist you should see if you go privately and be sure that you can opt back into the NHS if/when you need to. Best wishes

[Tony1973]

Thankyou so much for taking the time to reply - yes anxiety is my biggest issue - i struggle with it without medical issues, so having to wait and wait really sends me in a spin.

How can I find out what a Neurologist specialises in? just the hospitals own websites?

[Tony]

Hi Tony

I went private but left my NHS appointment in place although it was months away at the time. The key test was a Nerve Conductivity Test (they stick electrodes in your muscles). It’s not unpleasant. Need to just get in front of a neurologist a find out what’s going on.

[Marc from London]

Hello

Sorry to hear all this.

can fully understand the emotional stress. I too get sometimes emotional but only when I share my lethal diagnosis with people I am close with

all the best you
Marc

[Tony1973]

Well thanks for all the advice, its great just to talk isnt it !

2 things the last few days..

I got a letter from the junior DR yesterday, who saw me at the stroke clinic who forwarded it on to neuro - honestly i dont think she is thinking its me, she said "no tremors detected" - yet i can remember as bright as day showing her my tremors! she even said "oo thats unusual" .....but on the letter she said everything was clear . gutted I am so worried Neuro will put me at the back of the list.

i got a strange chest tightness in the front of my chest near the chest bone for 2 days now and my "acting out" my dreams is getting worse.

I am seeing my GP today so will raise these issue plus anxiety

but while typing this message and searching online - i've booked a private Neurologist for next friday at lancaster. (circle group - BMI i think it was)

So thats at least 1 date i can focus on.

best wishes to all.

[Ellie]

... its great just to talk isnt it !

Most of us wouldn't know... 😏

[Tony1973]

Getting more muscle flickers in calfs and other places all the time. Keeps me awake.

Left leg giving way almost every 4 steps and feels loose..
Got private neuro appt tomorrow
Still no NHS appt letter yet

Gp has given me beta blockers and sertraline as im spiralling into my own world of thoughts

What happens if I cannot get around ? Drive? How do I get help? Work? Money... What do I do if things get worse, every week there are two or more things new.... I'm in rented house with stairs, im so worried....

Sorry everyone sorry

[Piglet]

Tony1973 good luck for tomorrow xx

[Marc from London]

Getting more muscle flickers in calfs and other places all the time. Keeps me awake.

Left leg giving way almost every 4 steps and feels loose..
Got private neuro appt tomorrow
Still no NHS appt letter yet

Gp has given me beta blockers and sertraline as im spiralling into my own world of thoughts

What happens if I cannot get around ? Drive? How do I get help? Work? Money... What do I do if things get worse, every week there are two or more things new.... I'm in rented house with stairs, im so worried....

Sorry everyone sorry

Hi Toni

sorry to hear you are in a phase of diagnosis and finding a way to deal with it all. Stay strong even if it’s gets though.💪

best wishes
Marc

[Tony1973]

thanks everyone for the well wishes - it didnt go like i thought - after zero hours sleep and a long drive , he hardly let me finish my symptoms, but i showed him my tremors and he said

"how strange"

and after a quick typical nuero exam, he said they were probably from too much exercise but i should get EMG tests done anyway - he will sort it out, but there is a big backlog here in the north and it could be a few MONTHS.

i asked him about my muscle twitches he said they are probably anxiety

i asked him about my problem with my neck and throat and voice - and concerned all if it was connecting up to like MND - he said MND doesnt affect the face, when i mentioned about losing speech he said "look its very unlikely that its going to be that, but lets do the EMG and i can book you another visit..." so we await the EMG booking.

I was going to cancel the existing private Neurological consultant in Lancaster on friday but i think i will go to it anyway and if an EMG is needed , see what he/she can do in getting one sooner - whoever comes in first the other will get cancelled.

i know its going to break the bank for me anyway, but i dont care anymore

[Marc from London]

My private doc back when I was being seen first time did say from the beginning that nothing is off the table and until a proper diagnosis was made, MND is a possibility but could only be confirmed or ruled out after a range of checks. (MRI,EMG, NCS…)
it’s tough to hear but there is no room for false hope.

Hope you get more “lucky” with the private doctor in terms of honesty and speed of diagnosis. Waiting month for an EMG is just ridiculous.

Marc

[matthew55]

Hey Tony. I hope you never have to join us. If you get me. 😉😜😁😋xx

[Arcadian]

Sorry to read what you are going through.
I felt frustrated waiting for a Doctor's practice to consider some strange sensations weren't going away after a few months.
I sorted a private physio assessment and they emailed my GP in whatever muscle and reflex terms are more meaningful than me trying to describe.
I went back to my GP practice to push an appointment, now they had a physio report and that seems to have helped focus things, but I also now select a narrower choice of GPs there regarding getting referrals and interaction.
Sadly I think I'd still be waiting for my neck MRI if I hadn't pushed an external physio assessment (and that was with existing neuromuscular issues awareness at the practice).

I hope you get some clarity and at least feel efforts are being made.