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Loosing My Mind...HELP!

Hi all!

Very long winded post but im hoping someone can help me. I currently have no feeling on the right side of my face with eye twitching and insanely distorted vision, this is day 3. Every month and a half for the past 5 months I have experienced a barrage of symptoms which has knocked me for 6.

It all began in high school at about age 14-16 where I began getting an awful tremor I couldn’t write or hold a pen to paper after numerous scans and tests they couldn’t find anything and diagnosed me with benign tremor.

Fast forward 2 years and I am sat in college when suddenly just like that my left side of my body paralyses. Cannot feel or move my leg im pretty much dragging it behind me. Go to A&E where they do scans, eye tests the lot. Conclusion… they have no idea !

Fast forward another 4 years I start to get extreme fatigue like nothing I’ve ever experienced in my life I cant wake in the mornings, emotional mood swings like nothing ive ever experienced, but thought nothing of it then suddenly bam I suddenly begin walking into doors, stammering my speech, brain fog the lot for around over a month. I go to my GP, just tiredness!

They check my blood levels, hormones in blood etc all normal.

A month later the tremor is back aggressively and uncontrollably and this time its not only my hands but my head too, it looks like im having a full on seizure half the time. I go back to my GP who refers me to neurology because I mention both my aunty and grandfather both have MS.

A month goes by tremor eases off still waiting for the Neurologist and URGENT MRI then as if by magic like clockwork here I am with no feeling to the right side of my face with an awful numbness/electric feeling in my legs. So back to my GP I go who sends me to A&E where they take me for the MRI of just my brain (with no dye) and nothing shows, no lesions, no scarring absolutely nothing! The DR (not a neurologist) says that because theres no lesions I don’t have MS and that theres nothing wrong with me!

I am honestly loosing my mind! I am exhausted, emotional and well and truly done. All that seems to happen is that I go around in circles and I dont know what to do. Is there something Im missing here? They haven’t done any nerve tests or anything they didnt even look at my spine. Im just utterly confused!!

Please if anyone has any advice or can help me in anyway! I am just about done and am fed up of feeling like this.

Oh no i just wrote a ton of stuff and it deleted it all.

it was very complex answer as well.

Basically i think you need to calm down and take deep breaths. I think your triggering panic attacks. Your scared really frightened and have been for a long time.

i am gutted i had written such a lot to try and help you, i wont do justice to it now.

You are seeing the neurologist you said you have an appointment. it can take years to get a diagnsosis of MS it took me 16 years an i am still here, so if it is MS it will show itself positiviely one day, in the meantime, is there anything going on in your life apart from this weird stuff that could be triggering it. Are you stressed at uni, work, relationship did anything happen to you when you were young that could have started you on the road to all this weirdness?

You say it started when you were between 14-16 did anything happen to you that you dont talk about.

You say your aunt and grandfather has MS do you think you have MS? Have they scared you in some way by saying something to you?

Your mind is a powerful tool, it can take emotional stuff and turn it inwards on yourself, by presenting you with the oddest and weirdest things, that would associate with someone you are close too. Almost like a mirror image.

Numbness, tingling, tremors, balance, speach…the list could be describing MS.

BUT not everyone presents that way I didnt for example.

IF it is MS then it really will show itself, but the more you panic over the possibility of it being that and not getting answers is doing you more harm emotionally and you are becoming totally stressed over it.

that is why i think you need to treat these feelings as a form of panic attack, you are panicked as you are scared you have MS, and the panic can also trigger off werid stuff as well.

when you feel frightened try and deal with it as if you are having a panic attack i am not saying you are by the way just trying to find a way to help you calm down over this.

  1. Use deep breathing. …
  2. Close your eyes. …
  3. Practice mindfulness. …
  4. Find a focus object. …
  5. Use muscle relaxation techniques. …
  6. Picture your happy place.

can you talk to someone about all this? I know you have reached out to us, and i am doing my best but i dont know you, or your circumstances i dont want to give you the wrong information or help i cant help you i can only really try and reach out and support you.

You may not like what I am saying, but to me your making yourself worse. If it was MS with you have issues with tremors and numbness in face I think i would expect the doctors would expect to see lesions or plagues in your brain.

It is scary, look at your life are you going through stuff have you been through stuff what could be triggering this right now?

this is my journey 16 years it might give you a giggle. but i know how you feel beleive me but i was fortunate to have positive proof of MS but unfortunate that i was too old to have MS so it was ignored.

https://livingdailywithmultiplesclerosis.com/2018/03/04/the-beginning/

i am just so sorry i lost all i typed. I hope you will get further support from our lovely group, and that you can finally get answers, but believe me just because your aunty and grandad have MS doesnt mean you will. xxxxxxxxxxxxx

Thank you for your comment crazy chick. I’m a mother of 2 and a care assistant for my brother so you could say my life is pretty stressful. These occurances seem to happen at the end of a stressful period. In school was my exams and the pressure of that. College was when I was taking my AS levels and half of this year has just been a barrage of stress from my husband being made redundant and the daily pressure or having 2 children and working full time. I definitely think stress is a contribution to all of this, and testing for MS was the starting point is my family history seemed to point to it all. I’m very greatful that I’m able to see the neurologist soon it’s just all having such a big impact on my life, if I don’t work I don’t get paid etc it’s like a snowball that I just want to end. Xx

Hello

Crazy Chick has written a great answer to you (it’s a bugger when you lose everything you’ve typed!).

I don’t think there’s ‘nothing’ wrong with you. Clearly there’s something, but as CC says, it could be panic attacks, a response to stress maybe. It certainly seems that you have plenty of stress in your life.

As you’ve been tested several times over, and your latest MRI clearly shows no brain lesions, old or new, it seems that MS isn’t causing your current symptoms. I can understand why you’re so frightened - your symptoms sound really scary. Having family members with MS obviously puts the thought of MS into your head. But you do need to trust the doctors you are seeing.

As you haven’t been seen by the neurologist, I suggest you write down a timeline of what has happened to you, how long things have lasted and the relevant dates. This will be useful when you come to your appointment. It may also be of use to you, to have a clear linear picture of what has happened and when might assist in dealing with the stress in your life and these symptoms.

There are other diagnoses that share symptoms with MS. One of these is functional neurological disorder. Have a look at https://www.fndhope.org/what-is-fnd/whatisfnd.html Other disorders also share symptoms with MS, your neurologist may be able to pinpoint a clear diagnosis.

I wish you the very best of luck with your neurology appointment.

Sue

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Hi I have RRMS diagnosed about 16yrs ago now.You didn’t mention if you have had a lumbar puncture test? Also I have some damage in my spine so it would be good if you at least had an mri of your neck, you need an actual appointment with a proper neurologist. MS isn’t actually genetic although my mums cousin had it so I think there must be some connection. Over the years I have realised that GPs have no idea about the symptoms of ms! Others who have commented are right you need to try not to get stressed, get second opinions,and persist if you are not happy with the answers they give you.And yes it can take years to get a diagnosis depending on the symptoms.My local hospital is pretty rubbish really the mri scanners etc are really old I managed to get referred to a better hospital where they actually have a great neurology department.This could be an idea if possible.I mean you can’t suffer with these symptoms with no answer.Hang in there and persist to get some answers.Good luck x

Bertha27 you wrote: Over the years I have realised that GPs have no idea about the symptoms of ms!

HUN you are so right, they have no clue, my surgery had not even heard of PPMS, so what chance have I lol.

a lot of GP think it is just a bit of brain fog, fatigue, and balance issues, no PAIN.

they also believe its one glove fits all which is not true. everyone is different.

several years ago I was told by a doctor a neuro actually for someone with MS I could hold my own when talking and my communication was good. I have seen a lot of videos with people describing their MS etc, and in general for example the ones with PPMS seem to have very little issues with their speach. Yes when i am under stress I can babble, and loose words, but i think we should be drooling and rolling our eyes and have floppy heads or something.

xxxxx

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