5 years of hell, any advice would be appreciated!!

Posted , 2 users are following.

hi all

So my muscle twitching started 5 years ago, after i was bitten by around 20 ticks, around two months later i fell into the MND hole and ive never come out really. I have been tested for lyme by the NHS and it was negative although my friend at the time who was also bitten was positive.

Since then 4 years ago i had a emg that confirmed mild motor nerve damage. After this i was told it was repairing so left it. Fastforward to the present I've had two more within the last month, one normal... i never believed it so paid for another which came back like the first noticing issues. My neurologist dismissed it and put it all down to anxiety. Its not! Note they have all ruled out MND in their eyes as 5 years in they have told me id be severely impaired by now and would have no strength at all. However they did note brisk reflexes, this also makes sense as im really jumpy all the time. Someone will just touch me accidentally and i will jump out of my skin.

Over the years my symptoms have got so much worse. Noticed atrophy all over my body, nothing has failed as such but there is weird motion everywhere like all my joints cogwheel, stutter almost. Every single one of my joints crack, grind and tendons snap all over, ive seen people mention hypermobility which makes sense as i can almost dislocate my wrist and shoulder. My hips do the same where if i squeeze my legs the joint pops. This just seems to get worse. This is how i have gaged its getting worse and is the only thing the doctors say isn't normal.

Regarding the twitching they are crazy and happen 100's of times everyday all over my body, some small and others massive. Some hurt and others dont. I also get random jerks where a limb will fly on its own or my head will turn slightly due to a spasm. I get them most nights too.

I have constant acid reflux and major bowel issues where every movement is urgent. My eyes have gotten worse with constant floaters and random sharp pains that come and go.

The worst symptoms of all though are what i first thought to be brain fog. Over the years its just got worse to where i say the wrong words all the time when i speak and now to where i forget things all the time. Its becoming unbearable as i get confused all the time. I cant remember things i did moments before like whether i washed my hair in the shower etc. I cant plan or coordinate anything so its starting to effect my work. Every night i wake up confused not knowing where i am. What ever it is its effecting my brain and i dont know what to do. I'm 27 and the way things are going im not sure ill ever know what this is.

If anyone has experienced similar i would really appreciate being able to talk. I noticed a few people from years back have had similar issues.

1 like, 1 reply

1 Reply

  • Posted

    wow our symptoms, other than the bowel issues are the same. I have just PM you.

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