Fears of Motor Neurone Disease

[KatieD]

Symtpoms I have been having twitches all over my body (mainly at rest in bed or when sitting on sofa never when I'm active), burning sensations on my skin, pain in my muscles or muscles feel tender to the touch, arms get painful when I'm doing strenuous stuff and legs often hurt the next day like I've walked ten miles, dizziness, reoccurent sore throat, tightness across adams apple area, tiredness. I do feel worse at night and slightly better in the mornings. I don't have any real weakness anywhere, I can still do stuff but it just hurts afterwards. My GP has now said he thinks it could be Chronic Fatigue? or Fibromyalgia? But I am so, so, so anxious about it being the onset of something serious like Motor Neurone Disease and I'm sure this level of anxiety is not helping with my symptoms. I had a brain and neck MRI about four/five years back which was clear and again reality tells me the length of time I have been suffering these things doesn't add up to MND but the fear and panic is strong :(

[nomorepanic]

I get all of these too. I have never suspected MND though.

I think some of mine is down to the drugs I am on.

You should talk to eggy on here - he thinks he has MND so maybe you could help reassure each other that you don't.

[KatieD]

Thanks will look for Eggy, any reassurance helps

[Gareth]

Hi Katie

Just wanted to let you know you're not alone... On certain days I have MND, MS, ALS, and a variety of neurological conditions. I started feelling ill about 14 months ago now and have felt progressively worse since then.

I get - Massive muscle tension and muscle pain to the point of finding it hard to move my head, difficulty standing and walking in a straight line, stiff on one side of my body so that I have great difficulty moving my right leg when walking, confusion, slowness of movement and thought, serious fatigue, weakness in arms hands and legs, constant feeling of being off balance, need to hold my arms and legs tight to my body to stabilise myself when sitting, numbness in face and hands, tingling and burning skin sensations in my feet... I could go on.

I have a Neuro appt but not until January (earliest they could do). Until then I try to live my life and do the things I used to do but I feel so very ill all of the time it is difficult.

All the best,
Gareth

[itoldyouiwasill]

Symtpoms I have been having twitches all over my body (mainly at rest in bed or when sitting on sofa never when I'm active), burning sensations on my skin, pain in my muscles or muscles feel tender to the touch, arms get painful when I'm doing strenuous stuff and legs often hurt the next day like I've walked ten miles, dizziness, reoccurent sore throat, tightness across adams apple area, tiredness. I do feel worse at night and slightly better in the mornings. I don't have any real weakness anywhere, I can still do stuff but it just hurts afterwards. My GP has now said he thinks it could be Chronic Fatigue? or Fibromyalgia? But I am so, so, so anxious about it being the onset of something serious like Motor Neurone Disease and I'm sure this level of anxiety is not helping with my symptoms. I had a brain and neck MRI about four/five years back which was clear and again reality tells me the length of time I have been suffering these things doesn't add up to MND but the fear and panic is strong :(

Hi Katie. As you your last sentence said, these things do not add up to MND but you have fear and panic...I was in the same boat as you and know only to well how that fear and panic compels us to fit our symptoms to those fears and then all rationality flies out of the window.

MND disease is not defined by twitching or sensory symptoms, it is defined by objective and clinical weakness...you do have this so you are safe as any other member of the population in discounting MND.

I would suggest you are stuck in the classic self fulfilling loop of anxiety leading to symptoms and then fear of these symptoms leading to more anxiety and thus more symptoms....yep, it really is a case of pouring petrol on a fire.

The 2 possible diagnosis that the GP has suggested are seen as diagnosis by exclusion and both are heavily linked to anxiety and the physical symptoms it produces. I can tell you hand on heart that I have experienced pretty much everything you have and also feared MND, MS amongst other neuro nasties. I got through this and I'm sure you can too, remember anxiety can produce whatever symptoms it wants and it needs fear to survive...it knows what you fear and it is only to happy to oblige.

[daybyday]

I have these same neurological symptoms and of course the fears.
Thing is...they go away when the anxiety is down. I was just thinking today that when I was feeling good, and then something rattles my nerves I would instantly feel off balance, weak limbs, massive tension. When I calmed, it was gone.
Difficult thing with 24/7 anxiety is there is never that calm down point. And so my panic rises just keeping all the symptoms there.
I had to visit a neurologist a few months back for Bell's Palsy and all the motor skills test she did were fine. I even asked if I had MS or Parkinsons or the like and she said no.