Help anyone recognise my symptoms

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I've been suffering with something for 9 months now and the main issue i'm having is that what started off with shoulder pain and pain in the side of the head has turned into me slowly losing sensation throughout my body. I haven't lost the sensation of touch but I can no longer sense anything going on in my body. It started with the back of my neck and skull and then moved to my Scalp and chest and now it's pretty much the whole of my body. 

To me if feels like I can't feel anything beneath the skin in my body or head. I can't feel body temperature, hunger, bladder fullness, heart when it races, it's like i'm totally disconnected from all my internal sensations. 

I have some kind of tension all the way down my body from the back of my head to my back and abdomen but I can only feel a little bit but the tightness is always there and seems to pull in the middle of my back.

I also have allergic rhinitis in my nose.

I have been trying to get on with with things as normal but it's getting frightening. The docs said it was anxiety and depression at first but it doesn't seem that way anymore. Now i'm on the waiting list to see a Neurologist but this continues to progress bit by bit.

My body seems to go into a weird shock right before I lose sensation and something seems to rush through my head. forgive my lack of ability to explain but I can't feel much anymore just know the something floods my forehead and my body seems to go in slight shock. Even the way sound travels through my ears is different now It's like all the tissue inside doesn't carry the noise the same way. 

I tried to go running and I couldn't feel my heart beating or blood rushing it's all very strange. It's like my body died it must be working. It isn't working that well though, my heart rate goes up and down according to my fitbit, My stool is always yellow and my food doesn't look that digested. My back is tight and sore. I don't sleep well. 

Psychologically I feel very out of it a lot and my brain feels like it's in a dreamlike state these days. I'm able to converse and 

I'm worried my body is shutting down i'm worried I wont be able to feel properly again or if this will spread to affect my function rather than just my sensation.

I've tried a lot of massage and therapy but nothing has worked. I know I must wait for a professional but I wondered if anyone recognises what i'm going through.



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  • Posted

    I'm glad to hear you'll be meeting with a neurologist. Have you had a CT or MRI?

    It sounds like a compression issue. It's not something that can be guessed at without imaging.  Things like cervical or spinal compression, thoracic outlet syndrome or even a slight herniation of cerebellar tonsils can all cause those symptoms.

    The fact that you're able to run and go about your daily activities is encouraging. Unfortunately living with these kinds of symptoms is stressful and it sounds like you definitely have some health anxiety going on. It may help to speak with someone .. a friend or therapist to address your fears.

    I would suggest logging your symptoms while you wait for an appointment. List where the pain/sensations are, anything that precipitates it and how/when it resolves. 

    Unfortunately doctors, especially neurologists are quick to dismiss patients, women primarily, as 'depressed, anxious or hysterical'. Stick to the anatomical facts when relaying your symptoms . The more concrete information you provide, the easier it will be to identify the problem. 

    Best of luck to you!

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    • Posted


      Thank you so much for your response.

      I've been keeping a diary of my daily symptoms for a month or so to try and track whats happening especially as I get weaker and more spaced out. I used to run I can't any longer it just antagonises my system I can't feel any rush off it but If I physically exertion or too much stimulation of any kind seems to make things worse.

      I haven't had any scans of any sort which Im frustrated about but I think the GP doesn't want to send me for one they want the Neurologist to send me for one. I'm supposed to be having a CT scan of my Sinuses by ENT but i'm still waiting on my appointment for that. I've had one ECG and bloods which came back clear.

      I definitely have health anxiety or anxiety about being out of control of whats happening in my body...i'm pretty scared and find it hard not to. I've been going to CBT therapy and I reach out to my friends a lot. Its hard waiting when I see myself slowly deteriorate and disconnect from the world bit by bit. 

      I will keep the descriptions factual and to the point about my symptoms and stay composed It took me 6 months and a note from my psychologist to convince the doctors this wasn't all in my head. 

      Thanks again for your comments hopefully I should have some answers soon.

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  • Posted

    Hi have you had any MRI done ,I have the same not as bad but I have a Syrinx on my spine cord that causes that sort of sensations ,also lesions on my cords from the c2 to the c7 ,
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    • Posted

      Hi Carole

      I have a Neurology appointment on Friday I'm hoping this will be what her orders.

      I've looked up Syrinx and I can tell hot and cold water and if it's sunny I can feel the warmth etc but I can't feel my own body temperature I can feel somethings happening but not the warmth it's the same if I blush I feel something in my cheeks on the skin but I don't feel the warmth. is that how it works for you?

      It's Very strange. All of it is the most crazy sensory experience I can't imagine feeling normal again now.

      I've had lower back and mid back problems for years and more recently shoulder and neck pain. I do think there is a problem there if it's not causing everything it's causing something.

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  • Posted

    Hi just to let you k ow I also can feel hot and cold water and also the wind Sun etc,I can also feel touch ,but on the inside it's numb,these syrinx effect people all different ways some cant walk or use their hands im also fairly new to all this syrinx stuff but like you read up about it ,all i know how i have been affected by it with weak muscles in my legs and arms,all sorts of funny things happening to me but now I know what is causing it puts my mind slightly to rest,good luck on your diagnoses and you get the answers you need ,don't get fobbed off ,you will proberly get told you have fibromyalgia if they can't find a answer like most people get told until you actually after years of trying to finally get a good luckand hope all turns out for you ok x

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