Awaiting neuro referral - terrified

New diagnosis and before diagnosis
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Hi everyone,

I have just registered so that I can post and perhaps get some advice/views, however now that I am finally here I don’t really know where to begin.

It’s hard for me to recall exactly when I started to think that I may have MS, as I have had a LOT of symptoms arrive all of a sudden over the last few months but something that sticks out vividly for me is the first time I felt that ‘electric shock’ type feeling. I was on the tube, when I suddenly felt this most excruciating shock pain in my left shoulder/neck - I actually thought that I had been stung by a bee or wasp. The pain was over and gone within seconds. Then it started to happen more regularly - along with periods of numbness in my toes, tingling in various parts of my body, and a sort of ‘crackling’ feeling under my skin. I have also more recently been getting central chest pains.

I am a (just turned) 36 year old female with no previous medical history to speak of, apart from a brief period of sciatica (think this was due to my job in the ambulance service) and also twitches/jerks which I have had for years and years. I had investigations for these back in 2015/16 where I had an MRI scan of the brain and an EEG (and a sleep deprived EEG). I wouldn’t say that the results were completely normal, however I remember reading that there were no lesions on the scan, but that the EEG showed an insignificant abnormality “the origin of which is unknown” - I still remember those words - anyhow, I was discharged as the neurologist said that I had myoclonic jerks which are completely harmless…I didn’t think MS back then as I didn’t know what it was - and I wasn’t concerned once the neurologist discharged me and said these were normal, but now, with all of these other symptoms I cannot help but think that this is the start of MS. I have been to my GP (I have since relocated to a different part of the country) and she has referred me to neurology but I know that this is going to take months and months before I will be any clearer, and try as I might, I am thinking about it every single day. The symptoms not only hurt (the shock type pains more so) but they confuse and upset me. I am very active and love hiking and the outdoors and cannot help but think worst case and what might happen to my body next. Sometimes when I walk I feel that my knee ‘drops’ ever so slightly. I am overthinking everything.

I am not expecting anyone to be able to make me feel better, I guess I hesitated in posting here for the longest time as I wasn’t sure what I would gain, but I think that even typing this is getting it off my chest a little, and releasing some of the emotions I feel every day right now.

Thank you for reading.

Warmest regards,

S

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Morning love you handle, girlinabox neat. OK take a deep breath your getting way in front of yourself. what made you think this sensation could be MS? Lhermitte’s sign can be other things. Lhermitte’s Sign and MS: What It Feels Like, Treatment, and More Even down to low B12 MS well if you had all this back in 2015 I would expect you do have other things going on. MS is a tricky disease to diagnose, take me it took from 2000 to 2016 to be told i had PPMS. Yes myclonic jerks can be annoying but if you can ignore them as they are a symptom could be many things weirdly enough MJ is more common then people think. If they did an EEG they may well have been looking for epilepsy or similar. You say: ** insignificant abnormality** the origin of which is unknown… the words Insignificant means it was of little concern. so it could have just been a minor glitch at time of your EEG. I know your scared hun, I was too but 16 it took for me, and i am still here lol… MS is an odd thing. It really usually starts with significant pattern for RRMS and your symptoms seem to be pretty non specific spanned over time. Try not to focus on just MS it could literally be anything. Lhermittes sign usually presents itself when you put your head on your chest, it sounds more like your being zapped. so it could be you have an injury somewhere in one of your discs, maybe in your neck? Look up Arachnoiditis Syndrome it can cause: Severe shooting pain that can be similar to an electric shock sensation What i am trying to say is your symptoms could be a lot of different things. try not to focus on MS. I think wait now for your appointment, start a diary, and look back to when all this started what were you doing etc, as sometimes its a puzzle that can be completed before you go. You can write down the most severe symptoms to show the neurologist. try to just live your life as normal as you can. Hun I know how you feel really, 2000 I went blind, it was 2016 before i was told i had PPMS and in between i went through hell and back but i got through it, and weirdly enough at the time i never even thought of MS i thought i had a stroke. You can ask to see your neuro privately its not as expensive as you think i did it was worth every penny and that neuro has stayed with me since 2006 when my symptoms blew up lol. xxxxx good luck, you will get there. xxxxx

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Hello there, thank you for taking the time to reply :slight_smile: B12 def has been ruled out - first thing my GP did was run blood tests as that was the thing I was sort of hoping it would be! I don’t think the Lhermitte’s sign is the only MS type sensation - it’s the prickling and popping feeling under my skin, the tingling, the issue with my knee too…and the jerks which I have had for a number of years. On the Lhermitte’s sign symptom - I am not only feeling this in my neck, but in other places such as my toes, my fingers, my hip, and even my privates… - it is a very, very painful electric shock type feeling which is very brief in duration. I think they did an EEG because the neuro at the time said he couldn’t see any reason for the jerks so wanted to rule out epilepsy. It seemed to be like they just went down the wrong track and then all of a sudden I am discharged non the wiser. I wish they had done an MRI of my spine at the time. Apart from the jerks, which as I say have been going on for years, the other symptoms all started in the last 6 months or so. Thank you for the encouragement. I will start a diary. At the time this all began it was a very insignificant time so nothing to report on that front really. I managed to get a cancellation for my neuro apt so this will take place in January. I am very sorry to hear what you went through, I hope that you are doing well now and have got all the support you need. Thank you again, means a lot xxxxx