worsening neuro symptoms. scared

Posted , 6 users are following.

Hi I hope someone can't help.

I've been unwell for 8 months & getting worse fast.

My main symptoms are itchy burning pain in several areas including neck & back of head, weight loss despite eating lots, nausea, fevers, Rash, dizziness & worsening neuro symptoms.

The neuro things are scaring me the most as getting worse quickly & I can't take much more.

They started when the burning pain & itching hit my neck. They include, muffled hearing, feeling like I'm not conscious (not like being tired or foggy brain, it literally feels like my brain is shutting down, numb & I can't even speak or think), breathing difficulty (not hyperventilating or feeling tight chested more very shallow & slow like I have to think to breathe like my brain wants to breathe but the message isn't getting through), numbness in neck, back of head, face & pins & needles in hands, rapid heart rate, jumping with fright easily.

These are getting worse especially when falling asleep. Often I keep waking having to think to breathe. Its hell. This us all getting g worse alongside the neck pain. There are a couple of small lumps there. I can hardly move my head & often that makes the symptoms worse. Could something be affecting my nervous system? I'm getting very disabled by it all as very unwell, lost tons of weight, no energy & feel sick. I had to use a wheelchair to go to the shops recently & had to come straight home as couldn't hold my head up with the pain & the hearing loss & lack of consciousness got so bad I didn't know where I was & could hardly speak. I love going shopping so fed up I can't even manage that.

I've had MRI of brain & spine which were normal but no scans of the soft tissue.

Has anyone else had these symptoms? The breathing one especially. Drs misunderstand what I mean & say anxiety but I know how anxiety related breathing feels & its totally different. I'm not fighting for breath just have to think about it or it doesn't happen automatically.

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  • Posted

    So sorry your feeling this way. Have you seen a neurologist yet? Or did the gp do the mri? Reason being, ask the neuro if you can see a specialist like a muscular dystrophy dr. My neuro sent me to one cause he couldnt find anything. They explained to me they look at the nervous system and everything for things others don't know to look for. Its worth a try!! If you think you have a little anxiety tell your gp to give you something to help you calm down until its looked at. I wouldnt go to far with it thou. Go to hospital if its bad enough. Dont put yourself through that.

    One thing i learned about the nervous system. Everything is connected so if your nervous, anxiety, or in pain its going to react. Itching, burning, sweating, shaking. It use to happen to me when i first had to go out in my walker or wheelchair. Please make sure you get check fast don't let them put you on referral hold for months. Be persistant about it. Take care!!!. Let us know.

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  • Posted


    I'm afraid my message is not going to be of much help to you.  I am sorry about that. I'm not a doctor of any description.  I do have DYT1 Dystonia which means that every inch of my body is moving all day, it stops when I sleep.  Even as I write I've severe pain but there's nothing that will relieve it.  I get some respite from this incessant movement and pain by having acupuncture and Deep Tissue Massage from a physiotherapist.  Maybe you'd consider one or both of these options.

    Best wishes


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  • Posted

    Hi Mandy I know just how u feel ,after about half hour of getting up I get a stinging tingle head then I get this horrific headache I can't bear the pain , I been to A E twice now , they gave me a ct scan and discovered a cyst ,the hospital said that if u scanned 100 people 75% will have one and it's nothing , I then went back to my go who has referred me to a neorologist ,some days my eyes hurt and I can't focus very well until about 1 o'clock in the afternoon ,the docs put me on anatriptaline and codrydomol for the pain ,it has taken the edge off but I have had this headache now for a month ,my opt for neorologist is 27 th June seems so far away as I am fed up with it now ,I'm normally a fit 64 yr old but I feel I'm old before my time , keep in touch let me know how u doing 

    my best teresa x

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  • Posted


    Imhad similar symptoms about 10 yrs ago, what are your symptoms as to the breathing and what are your fears? Do you get breathless after doing the simplest thing, or all the time. Mine is exertion, I'm in pain, I have to lay down due to the pain. It's then that the breathlessness hits me.  I eventually had a diagnosis but had to go privately. I will answer any questions. Keep me posted

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