Whats your experience

I have had twitching for 9 months,on every muscle in my body ground glass opacities and constrictive atelectasis of both lungs. I feel like I am having difficulty talking and definite muscle loss in both arms and face. My GP said he is stumped. MY husband,sisters and girlfriend say when I see a neurologist after the first of the year they will tell me nothing is wrong. What do you have to do-die before you can get a diagnosis or anyone to believe that something is wrong.

[Idab]

Just about - I nearly died last year from a misdiagnosed burst appendix ending in pancreatitis over a space of 8 months - when they couldn't find the appendix and said that it had been 'auto-digested'!- this is when the red flags were raised.  I was referred to a Neurologist via my gastro specialist who recomended I have my swallowing difficulties /gnawing leg/muscle/bone pain/ deathly fatigue and skin numbness on the back of my neck seen to.  My current Neurologist, although he has diagnosed me with Myositis, it took him just over 6 months to make this diagnosis and still I don't believe that this muscle condition won't lead to muscular dystrophy.  I cannot believe that loss of muscle use does not lead to some atrophy???  Anyway, I am on cortizone treatment and we will see how far this gets me.

Please don't give up - as mentioned before - I think it should be considered a crime when a specialist is unable to diagnose a patient - afterall they are taking our money or the states money and not fulfilling their service.  Also makes you think why they spent so many years studying and they cannot make a senseful diagnosis - it is not like they don't have enough conditions to choose from.  The process of elimination so often used in mis/un diagnosis is pathetic and only causes unnecessary delay, brings on anxiety/depression and wastes a lot of money.

Take care

[chelsea3322]

Thanks for giving me another possiblilty besides ALS. I read that statins can cause some problems. I tried to take 3 different ones and finally told the doctor-no more. He sent me a registered letter firing me as his pt. I wonder if many people with als have tried statins with or without success.Does myositis cause muscle twitching. Does ALS cause muscle burning?

[Idab]

Hi, not sure about ALS causing burning, but Myositis doesn't cause twitching as such - I have slight tremors running through back of arms and down back of calf muscles, but you cannot see these.  The main symptoms for me have been the gnawing sensation (this is supposedly the inflamation (inflammation)) in the femur muscles and extreme weakness/pain in arms and hands/fingers, swallowing difficulties, neck burn/numbness and deathly fatigue.  Only when you strain your muscles as in exercise - even light exercise such as walking up stairs can you feel them burn - my explanation is that they feel as though they are tearing from the bone - very painful - I live on anti-inflammatory medication for this.

Good luck and I hope you find out what is troubling you soon.
Take care