- Messages
- 11
- Location
- Melbourne Australia
Hi everyone, first time poster, male in my mid 50s.
I'm having all sorts of issues right now and I don't even know if this is the right forum to post in.
About 2 and a half years ago I was having leg cramps and burning feet, about 3 months later this turned into all over muscle twitching which is still going every day, all over including my face and tongue. I've had MRIs and been cleared of MS, and 4 EMGs over an 18 month period and been cleared of MND. Over the past couple of years, my stress levels have often been quite high due to the worry that I might have MND, and also work stress and poor sleep. Two sleep studies show very little stage 4 sleep and waking up often (I didn't need a sleep study to tell me that!!)
My last EMG was a couple of weeks ago of 11 muscles including left & right side of tongue. Nerve conduction tests also ok. So enough EMGs, I'm turning into a pin cushion! The only "issue" noticed on my last EMG was fasiculations which the neurologist said are completely benign (benign in terms of MND). He was actually pleased to catch them on the EMG so he could tell if they were pathological or not.
Reflexes are all in tact with no signs of upper motor neurone.
Since about 6 months ago I am noticing atrophy of arms, hands, thighs, feet, neck, my GP and the Neuro agree it's atrophy but both suspect it's more fat atrophy rather than muscle, my muscle strength appears to be normal. I have gained considerable abdominal weight. My hands have become like road maps due to veins and what simply looks like a loss of bulk on the tops of both hands. I do know that I have lost muscle bulk in many places and was wondering if cortisol might have a role to play there. The skin in the inner side of my forearms arms and on the top of my feet has become very soft like a baby's skin.
My feet are also losing bulk and have been getting quite sore including peeling skin along the small toe side and sores which will only clear up using cortisone cream which I don't want to use for too long. Feels like bone pain inside my feet along the top, and also pain in the arches and big toes. Shoes that are a little on the tight side make my feet burn and to stop this I have to take shoes and socks off. Skin along the sides of my feet gets very red.
I have had a swallowing problem since Dec 2013 which has been checked by an ENT, and two EMGs which both included bulbar, nothing found (which of course is great news). I swallow fluids ok but find it hard to push down solids which are a little dry. Dry swallowing just feels dysfunctional. I thought I might have a TMJ problem as I do have bruxism and wear a night splint, but my dentist says no TMD so no idea why there's a swallowing problem.
I'm noticing that I am becoming itchy but there's no rash or spots, just random itchiness including on my face. My mouth and throat are often quite dry, voice goes hoarse easily, eyes are dry, skin is dry, and tongue feels a bit like burning and some tongue pain deep at the back somewhere. Eyebrows have drooped and feel very puffy on my eyelids. Is there anything left to go wrong?!?!?! Of course there is, I seem to sweat more than usual. And there's a kind of numb sensation over my eyes and forehead and eyes feel like they're getting puffy and they sometimes sting, there's also sometimes a sensation over my forearms and top of hands like there's a stocking on them.
I take daily vit C, magnesium powder with amino acids and calcium and some other vitamins (a Blackmores product), vit B complex, pro biotic tablet. Last blood test showed mildly elevated levels of CK, AST, ALT but a repeat test showed CK & AST had returned to within normal limits and ALT was on the way down too. Vit B12 and blood sugars are fine, TSH is fine. Blood pressure is fine but I do get heart PVCs which I'm told are also benign. A year ago my ferretin levels were too high but had returned to normal after 6 weeks, I think bad diet played a part there while I was on holiday. I'm also having a bath 2-3 times per week with those dead sea bath salts thinking it might be a magnesium issue.
Medications include Avanza and Nexium.
I'm thinking that my stress has triggered something but what? My Neuro has now said that I have BFS due to benign twitching being confirmed and the amount of time that has elapsed since the twitching started. I don't really think about MND now but do wonder if something else might be causing the twitching and all these other myriad of symptoms.
I'm sorry for my long disjointed post, it's difficult to put this into some sort of order and not forget symptoms. If it would make things easier I could summarize symptoms if that would help?
A rheumy said I've got symptoms of fibro but I don't really have the specific tender points, although I do sometimes get some muscle pain. I'd really appreciate any comments.
Cheers!
I'm having all sorts of issues right now and I don't even know if this is the right forum to post in.
About 2 and a half years ago I was having leg cramps and burning feet, about 3 months later this turned into all over muscle twitching which is still going every day, all over including my face and tongue. I've had MRIs and been cleared of MS, and 4 EMGs over an 18 month period and been cleared of MND. Over the past couple of years, my stress levels have often been quite high due to the worry that I might have MND, and also work stress and poor sleep. Two sleep studies show very little stage 4 sleep and waking up often (I didn't need a sleep study to tell me that!!)
My last EMG was a couple of weeks ago of 11 muscles including left & right side of tongue. Nerve conduction tests also ok. So enough EMGs, I'm turning into a pin cushion! The only "issue" noticed on my last EMG was fasiculations which the neurologist said are completely benign (benign in terms of MND). He was actually pleased to catch them on the EMG so he could tell if they were pathological or not.
Reflexes are all in tact with no signs of upper motor neurone.
Since about 6 months ago I am noticing atrophy of arms, hands, thighs, feet, neck, my GP and the Neuro agree it's atrophy but both suspect it's more fat atrophy rather than muscle, my muscle strength appears to be normal. I have gained considerable abdominal weight. My hands have become like road maps due to veins and what simply looks like a loss of bulk on the tops of both hands. I do know that I have lost muscle bulk in many places and was wondering if cortisol might have a role to play there. The skin in the inner side of my forearms arms and on the top of my feet has become very soft like a baby's skin.
My feet are also losing bulk and have been getting quite sore including peeling skin along the small toe side and sores which will only clear up using cortisone cream which I don't want to use for too long. Feels like bone pain inside my feet along the top, and also pain in the arches and big toes. Shoes that are a little on the tight side make my feet burn and to stop this I have to take shoes and socks off. Skin along the sides of my feet gets very red.
I have had a swallowing problem since Dec 2013 which has been checked by an ENT, and two EMGs which both included bulbar, nothing found (which of course is great news). I swallow fluids ok but find it hard to push down solids which are a little dry. Dry swallowing just feels dysfunctional. I thought I might have a TMJ problem as I do have bruxism and wear a night splint, but my dentist says no TMD so no idea why there's a swallowing problem.
I'm noticing that I am becoming itchy but there's no rash or spots, just random itchiness including on my face. My mouth and throat are often quite dry, voice goes hoarse easily, eyes are dry, skin is dry, and tongue feels a bit like burning and some tongue pain deep at the back somewhere. Eyebrows have drooped and feel very puffy on my eyelids. Is there anything left to go wrong?!?!?! Of course there is, I seem to sweat more than usual. And there's a kind of numb sensation over my eyes and forehead and eyes feel like they're getting puffy and they sometimes sting, there's also sometimes a sensation over my forearms and top of hands like there's a stocking on them.
I take daily vit C, magnesium powder with amino acids and calcium and some other vitamins (a Blackmores product), vit B complex, pro biotic tablet. Last blood test showed mildly elevated levels of CK, AST, ALT but a repeat test showed CK & AST had returned to within normal limits and ALT was on the way down too. Vit B12 and blood sugars are fine, TSH is fine. Blood pressure is fine but I do get heart PVCs which I'm told are also benign. A year ago my ferretin levels were too high but had returned to normal after 6 weeks, I think bad diet played a part there while I was on holiday. I'm also having a bath 2-3 times per week with those dead sea bath salts thinking it might be a magnesium issue.
Medications include Avanza and Nexium.
I'm thinking that my stress has triggered something but what? My Neuro has now said that I have BFS due to benign twitching being confirmed and the amount of time that has elapsed since the twitching started. I don't really think about MND now but do wonder if something else might be causing the twitching and all these other myriad of symptoms.
I'm sorry for my long disjointed post, it's difficult to put this into some sort of order and not forget symptoms. If it would make things easier I could summarize symptoms if that would help?
A rheumy said I've got symptoms of fibro but I don't really have the specific tender points, although I do sometimes get some muscle pain. I'd really appreciate any comments.
Cheers!