Myalgia Paraesthesia mis-diagnosed

[Spiderpig 123]

Hi,

Around 3 years ago I was woken in bed thinking someone ad broken in and plunged a knife straight into my this, I screamed in pain and (I look after my mum on my own and she has advanced dementia,) I had woke get up and she came rushing into my room to make sure I was OK.

I'm not confident in the big bad world and didn't want to see the Doctor, I thought I might have slept funny on my thigh

Over the next few weeks my outer hips and right thigh started to lose sensation, while being hypersensitive, for example if I bang into anything you would probably hear me scream in pain,

I suffer an anxiety disorder (amongst other problems) so I kept putting it off saying to myself it will get better but I swore to myself if it spread I would go straight away., (guess what's coming), about 3 months later I woke up with a numb patch on my outer thigh, so doctor I had to go, terrified.

He arranged for me to see a neurologist (8 month wait), he did some standard, touch your nose, squeeze my hands, push and pull my arms etc,

I asked him at the end "do you have any idea at all), he said" Your symptoms are Myalgia Paraesthesia which is a trapped nerve in my groin that blocks all feeling in your outer thigh", I asked if this was normal in both legs and (this is the convoluted part) he said that the chances of both legs having trapped nerves in both legs he has never heard of,,

He said there are two surgeons in the UK who may be able to release the pinched nerves and I would at best have a 50/50% chance it would work but the other 50% is life in a wheel chair.

I have been hounding my Doctor for another appointment to be arranged but as usual it will be another 8 months., I'm on 2700mg of Gabapentin, the highest dose and nothing anymore, they tried Ampitriptyln but nothing at all, , I nearly called Ambulance 2 nights ago as I just developed a stabbing pain which I can only describe as someone pushing a needle straight through my thigh and it's being moved around inside all night, literally for 10 hours, no sleep at all again,

If Myalgia Paraesthesia is unheard of in both legs why was I diagnosed with it, I did look on the Internesite regarding it and it's essentially a fob of where they can't diagnose as the haven't seen it before, so I'm labelled with a diagnosis that the Doctor and Neurologist don't believe I have just been given the label of having Myalgia as it's easier to label it rather than say "We don't know what it is so we will do more tests.

Any help would be much appreciated and thanks for listening

Take care

SP

[Davit]

I have myalgia in both legs and I have pain and swelling lower down toward my ankles. It is due to having my lowest vertebrae collapse on the nerves coming out of it. There is no repair. It has solidified so the pain is not too bad. I do not dare fall down though and can not ride horses or anything that would jar it. I have this in my neck too, that one can hurt very bad sometimes. I'm limited to lifting no more than 20 pounds. I weigh 176 pounds this morning. I have been as high as 230. I'm better at this lighter weight. I bought a hospital bed so I can get in a position that does not put pressure on my spine and pinch those nerves. I can not stand very long so have things to sit on spread all over. I do almost all my gardening sitting. Eighteen inches is my ideal sitting height. I got six plastic cable reels from a hydraulic supply store and I find them ideal. They don't rot in the garden either.

[Spiderpig 123]

I have myalgia in both legs and I have pain and swelling lower down toward my ankles. It is due to having my lowest vertebrae collapse on the nerves coming out of it. There is no repair. It has solidified so the pain is not too bad. I do not dare fall down though and can not ride horses or anything that would jar it. I have this in my neck too, that one can hurt very bad sometimes. I'm limited to lifting no more than 20 pounds. I weigh 176 pounds this morning. I have been as high as 230. I'm better at this lighter weight. I bought a hospital bed so I can get in a position that does not put pressure on my spine and pinch those nerves. I can not stand very long so have things to sit on spread all over. I do almost all my gardening sitting. Eighteen inches is my ideal sitting height. I got six plastic cable reels from a hydraulic supply store and I find them ideal. They don't rot in the garden either.

Well that is reassuring to know, Worrying my Neurologist didn't know that, and what I thought that may be a coincidence, I have noticed (how can I describe the feeling, it s starting to get like fluttering In my ankles really irritating but only started 2 months ago like restless leg syndrome,

When you had your examination (if you don't mind me asking) , did they manage to find the nerve that is trapped with their box of gizmos. they seem to enjoy torturing you with:blush:

Nice to meet someone who knows how painful it is and I find I'm reallyreally clumsy now😡

Hope to speak to you soon, it may be helpful for both of us.

Thanks again,

SP

[Davit]

It shows very clear on an Xray and would be clearer on MRI. It looks like two fat pieces of spaghetti in a ball of flour. There is a slight space around then. The six above still look like vertebrae but are fused together. They do not bend. Between my spine and my knees I am five and a half inches shorter. The biggest out of my knees. They literally removed my knees and pinned in metal ones.
I definitely know about pain, pain that morphine would not even touch at times.