Recent content by kiara

Hi they found some fibrillations and twitching and myotonic discharges in all the muscles tested, they said I may have neuromyotonia so I had a blood test to see if I have antibodies against potassium channels. I'm still waiting for risults. They said my emg were not so bad cause my motor units...

Hi Lolita it's a good new you're pregnant of baby three. I had some tests last friday, my emgs were not normal they found fibrillations fasciculations and myotonic discharges....they said it doesn't really seem to be als but there's something wrong going on with my muscles, I also had some blood...

Hi, my vision isn't normal yet, I have this double vision going on almost every day but not all the day, it comes and goes....as in your case I also have wasting in hands feet thumbs calves and the specialists are concerned about this because is not a symptom of neuromyotonia. They said there...

Hi Derec I had the tests yesterday. I haven't the results yet but during the emg they said they found fibrillations, fasciculations and myotonic discharges in almost all the tested muscles, they said it doesn't seem so bad cause despite these findings my motor units appeared to be normal in...

Hi, his symptoms make me think about some rare diseases called periodic paralysis.....take a look at hypokalemic periodic paralysis and hyperkalemic periodic paralysis on web and see if there are similarities with your husband's issues. Good luck

Hi Derec, I read your message to tb12 saying you have problems with your joints popping and cracking. I have the same problem, I developed the popping and cracking of joints when all this mess started and it's getting worse and worse: all my joints cracks hard when I move and it's not normal...

Hi, I'm going to have some tests on 23 and 24 of May in a specialistic clinic. Symptoms are slowly getting worse: twitching everywhere, stiffness and weakness in all body....I've also developed vision problems like blurred and double vision....don't know what to think, I hope the clinic will...

Hi, I read that probably you have Ehler danlos syndrome. I know that this syndrome in some patients causes severe problems of impaired swallowing and gastroparesis, some people with Ehler danlos have to be fed by G-tube or by intravenous cath for the whole life. Ehler Danlos is a very...

Hi and thank you for your preyers. Unfortunatly I'm still in limboland waiting for the day hospital, I think they are going to call me this month. How are you?

Hi Derec, if your MRI was also clear I don't know what suggest to you...these issues we are going through are really complicated. I started one year ago with widespread twitching, weakness, loss of muscles in hands feet and ankles. All my tests were clear too but I got worse during months so now...

Hi Derec I read about your symptoms and wondering if you had an MRI of your brain, wide pupils are really not a symptoms of motor neurone disease, it can depends from brain issues or from metabolic discorders. Greetings

Hi, have you ever been tested for myasthenia gravis? this disease can starts with weakness in the bulbar area and shortness of breathe and it's more common in young age than MND. Has your shortness of breath been confirmed from specialists or it's only perceived? Did you have some tests like...

I'm really sorry for you and I don't understand why doctors don't want you to go on a vent. It's your life and you have the right of living it as long as you can even on a vent. Here in Italy all doctors have the duty to vent every patient that is in respiratory failure unless he has chosen...

Hi, I'm sorry you're having these issues, especially at a so young age. I'm sure that lack of iron can cause a lot of symptoms like fatigue, poor stamina, shortness of breathe but it cannot cause nerve damage and abnormal emg. Anyway nerve damage can be caused by a lot of things more treatable...

Hi Lolita thank you for your message, I'm not going very well... general weakness is getting slowly worse and I have problems walking couse my legs are stiff and heavy, especially the left one. I can't walk more than 15 minutes. I asked about ME to my gp, he says I have symptoms like brisk...