Hi all !
Hope you can share your thoughts on this
I apologise for the length of this post in advance
Right to start off.
5-6 years ago one day my upper eyelid on my left started twitching which at first I thought I was tired stressed ect. So I tried to get more sleep , less stress. After three months of constant twitching I started to grow concerned it was driving me nuts!
So I started taking magnesium pills ect and stopped any caffeine. Then one day it stopped! Great!
The next morning when I woke up the lower eyelid on my right began twitching I thought then this isn't right.
And then shortly after everywhere was twitching on and off calves , thighs , shoulders , abs you get the picture. And is wasn't just a twitch sometimes it felt like what I can only describe as a rumble in my muscles like a spasm but not painfull and also sometime my muscle would "pull up for a second or two and drop back" (sorry im trying to explain the best I can)
I though I have either MS or ALS. From the literature I had read this was ALS.
I went to my GP and told him of my concerns. He said " the chances of someone of 26 having ALS is 1 in a million. He said it was as likely as me walking down the road and finding a bar of gold. It could happen but very unlikely ".
I went away with that in mind but the twitching ect continued so I returned and said I would like to pay to see a neurologist.
2 weeks later i saw a neurologist by that time twitching had subsided somewhat but not gone.
The neuro was very thorough and test my reflexes , strength , balance ect , and said " you dont have ALS or MS , I would have found something clinically but you are totally normal. Its benign you are fine"
I took this a gospel and just went on with my life.
The twitching subsided further but never went every now and then I would get a twitch here rumble there.
Fast forward 5-6 to now .
Driving home from work beginning of april suddenly my right hand which I was driving with suddenly was complete pins and needles . It lasted 30 secs or so. I immediately thought thats MS.
By the time I got home my finger tips on my right hand felt strange all I can say is the felt bruised not painful but as though there were injured within the hour my other hand fingertips were the same. I thought MS didn't present symmetrically so thought it cant be that must have injured them at work.
5 weeks later the sensation had remitted somewhat but was still there. Then I started noticing when I bent my neck forward I had a rumbling in my back and tingling in my feet (lhermittes)!
Went to the GP four times they said "trapped nerve , disc problem but not ms balance ect fine " He sent me for a cervical MRI.
Before the cervical MRI systems mildly developed when I walked my dog and got a bit hot I would have little areas of tingling in my thighs and abdomen that would get worse when bending my neck forward.
So before the results of the cervical came back.
I again had to pay to see a neuro and again clinical was fine but he said " it sounds like Lhermittes ill send you for an MRI of your brain and cervical but I cant find nothing wrong with you " same as the previous neuro.
When the results of the cervical came back it was inconclusive and said " there are two areas in c-spine that seem to be in keeping with demylenation but could be artifact "
When I went for the brain and cervical a month later the radiographer done my brain and cervical and then brought me out of the machine he said "when was your last MRI and on what ? I told him on my cervical and he then told me that while I was there he was going to do my whole spine before I could ask anything I was back in the machine . They did the whole spine then brought me out gave me an injection and then did the whole thing brain ect again. I new then that this was trouble because they were doing this off there own back and not from request of my neuro. I was in the MRI machine for 2 hours!
When the results came back they were bleak. They read " Several ovoid t2 hyperintence/ t1 low signal lesions in the corpus collasum , basal ganglia , left external capsule and sub-cortical white matter"
I don't really have a clue what this means and neither does my GP except its MS.
Now I think that the MS was starting all them years ago with the muscle twitching 5-6 years ago. Surely all those lesions would not have appeared from as recent as April this year.
And I wouldn't have even thought MS if I hadn't have these sensory symptoms the old muscle twitch / spasm I would think its still benign and could well be I really don't know.
Tell me what you guys think of this epic post (sorry to anyone who took time to read it)
Do you think I had it all them years ago ?
Also as a bonus the NHS haven't got an appointment with a neuro for me until the middle of December
So looks like I will be paying to see one again -£250 !
Back to top