Hi Stan, How are you doing? My husband found towards the end of his als that his eyelids became weak. However, we have a friend with early als and he is finding that his muscles in his eyelids are weak. I guess that this happens with some patients and I do not think that it is a common side effect, but who knows. There are so many variables with this als thing that nothing surprises me anymore. Good luck to you and please post whenever you can. God Bless.
:?: Hi every one,
regarding my eye weakness ,when my wife noticed my eye a bit off and lazy ,she phoned the neurologist and he said it is due to the ALS and since i have this disease for ten years no other person has complained or noticed it as they pass away within five years but my wife didnot buy the doctors theory and put the antibiotic drops in my eye and massaged my eye lid and around the eye and now i have the perfect eye and vision.As we believe that since my nose needs to be suctioned a lot maybe a musle got pulled or some thing and with proper cleaning and massage it is better now,so please do your own research if you have to as the doctors are not always right as they tend to blame every thing on the disease.Would you believe they never did an MRI or any Ct Scan or any thing but since one doctor said its ALS every one sang the same song,i have this disease for ten years and am on the ventilator for over 7 years and at home and not once gone to the hospital still able to speak and swollow but the neurologist or the doctors are not curios or want to know why is it so,wish some one will try to find out what exactly is wrong with me and if it is ALS why i beat the odds? thanks every one andd keep your hopes up i believe some day we may have one doctor with humanity and love to help forgotten people like us.
I'm glad you have been given 10 years plus. According to my doctors and research of my own. There are people who live 10 or even 20 years with this disease. There seems to be no ryhmn or reasoning to it. A gift from God is the best i can do. However, it is rare for this to happen. I do appreciate the tip about the eye problem though as i do have trouble with mine on occasion. Take care and may you have peace in your days. Marlo
So you have been on a ventilator for 7 years huh? I am assuming it is attached to a trach. Dad just got the ventilator/trach combo a couple of weeks ago. We are learning and adjusting each day. He will be coming home from the hospital by the end of next week, which we are all looking nervously forward to. Would you mind sharing any problems you have come across with your vent, or tips that a "newbie" like me might need to know. I am trying to get as prepared as possible. Last night, at the hospital, I changed dad's inner canula (a tube that enters the trach) for the first time and suctioned him (you stick a tube down towards the lungs and get all the gunk out for those of you who don't know what I am talking about). I was SOOO nervouse but didn't dare show it. I want dad to think I am confident in working with him. Needless to say, it went really smooth and was much easier than I thought it would be. I am thinking that this whole trach/vent thing might not be as big of a deal as I originally thought. So if you have any good advice about your vent, I would really appreciate it.
I (Salma Sultan Ali) from Pakistan beg to say that my father has been suffering from Motor Neuron disease(ALS). According to Doctors of Aga Khan University the treatment of this, is not possible. Sir please do some thing. We are three sisters and one youngest brother. He is only supporter in our home. We all brother and sisters are studying now. He is middle age and very nice man. Sir pls. Being a human being do some thing pls. We are really worried about it. Sir he feels more weakness in his left leg and arm. Sir he is alright about his speech and brain. Sir I request you a lot pls. Do some thing. Pls. Pls. Pls. Sir, Answer me.
I am sending his current proved report.I hope you will be take some action on my application. I always be remain thankful to you. God bless you.
Electromyography and Nerve conduction Report
Limb temperature was 35.0 degree centigrade .left median (APB)and ulnar (ADQ) motor nerves showed normal distal latencies , CMAP amplitudes and conduction velocities along with normal minimal F wave latencies and waveforms. Left posterior tibial motor nerve showed normal distal latency, CMAP amplitude and conduction velocity with normal minimal F wave latency and waveform. Left peroneal (EDB) motor nerve showed prolonged distal latencies, low CMAP amplitude and slow conduction velocity with not recordable F wave latency. Bilateral H reflex studies normal symmetrical latencies and waveforms. Left peroneal (TA) motor nerve showed borderline normal distal latency , normal CMAP amplitude and slow conduction velocity. Right peroneal (EDB)motor nerve showed normal distal latency, CMAP amplitude and conduction velocity with normal minimal F wave latency and waveform. Right median (F2), ulnar (F5) , radial and bilateral sural sensory nerves showed normal peak latencies, SNAP amplitudes and conduction velocities. Needle EMG exam of bilateral vast us medial is, first dorsal interposes, biceps, right tibia is and left gastronomies muscles showed active enervation with fasciculation (except for right first dorsal interposes and biceps where presence of active enervation could not be commented upon), rapidly firing naturopathic MUP’s with reduced interference pattern. needle EMG exam of right geneoglossus, masseter and orbicularis oris muscles showed normal insertional activity,normal MUP's with normal recruitment and full interference pattern. Needle EMG exam of right upper, middle, left lower thoracic and right lower lumbosacral paraspinal muscles showed active denervation. Right lower cervical paraspinal muscle could not be assessed property.
Current electro diagnostic study is abnormal. The finding are suggestive of diffuse acute and chronic neuropathic process affecting anterior horn cell which is appropriate clinical con. May have motor neuron disease
i want to ask you.My father found a muscle itchng on his eyelids and eye sight also became weak. is it happen in mnd what should we do.pls advice me. he feels a pain in his left arm and around backneck . he cant sit more than 15 mint. he want to rest on bed all time. he want to sleep all time. the muscles cramping is the big problem for him. Should he use Riluzole now?.