Myasthenia Gravis, get a specialist. Your eyes are screaming this and you have all the symptoms. Have you been checked for this? Look it up and see if it fits. Have you had an EMG? And mestinon works wonders! Hopes this helps!
@rebco77 I have been tested for numerous conditions, I am not sure about MG. I did have a EMG but it was only on the muscles in my right leg and feet which was giving me the most problems at the time. The problem is i have some many symptoms. I am usually told that my constellation of symptoms doesn't fit anything they are aware of. The only thing I know of that they do fit is Myalgic Encephalomyelitis. Interestingly the muscle weakness it causes had been likened to that seen in MG.
@kaazoom * One test is for antibodies against the acetylcholine receptor.[3] The test has a reasonable sensitivity of 80–96%, but in MG limited to the eye muscles (ocular myasthenia) the test may be negative in up to 50% of the cases. Have you had this done? This is the most common test.
@rebco77 Unfortunately, although Myalgic Encephalomyelitis has been listed as a neurological disease since the late 1960's, many doctors no longer recognise it and it is usually assumed to be the same as CFS. Most of the real experts in CFS believe Myalgic Encephalomyelitis is not the same as CFS or is a sub-group. I have assumed this is what I have (one neurologist did diagnose this early on in my illness) as no doctors take me seriously any more!
i havnt seen your previous vid so I may be out of the loop in terms of how this all started and how long its been going on. have similar problems and have basically been made by the neurologists to feel that im a bit of a mystery!
Yes, I can see a marked improvement in your walk when you go backwards. Has anyone tried massaging your legs to help prevent them from getting stiff (that helps me sometimes)? My dad is almost 70 and healthy for his age (seems healthier than me anyway!), except for a little trouble with his knees. He finds it much easier to go backwards when he's going down stairs- I don't know if that's relevant.
No I haven't tried massage. I have been given some stretching exercises that can help for a bit. I do know that some types of action dystonia can react like this. I have found a couple of articles about people who have dystonia, who cannot walk forwards without their legs spasming, but can walk backwards ok. I'm not sure this is diagnostic though.
Either way, "it's all in your head". I'm sure you know what I mean. I wonder myself about my neurological problems and realize that they are intertwined and the "base source" doesn't really matter. I'm sure that your recent resurgence has a lot to do with your "anniversary" as it's all interconnected; as a fahter, I understand. . I would like to see a video from you of your perspective of things from the beginning... I think I may have a similar problem in the beginning stages.
I am fortunate as I do not usually need a wheelchair, except if I go out somewhere for the day. I can manage short distances with a walking stick. I do have a mobility scooter but have problems using it especially for long period or in crowds. I get dizzy, lose concentration and suffer from overload. In fact most of my symptoms get bad sitting upright too long. I've been given some stretching exercises by a physiotherapist. She gave me exercises to improve my balance but they made it worse!
I hear you, as we both share the same issues here. Going places, seeing friends, eating out, watching a movie ~ I have recently found out that it is less tiring on me to use the wheelchair, plus it buffs my biceps. The scooters make me dizzy, so I usually end up crashing in to someone or some thing like a large, stacked section of cereal boxes. One by one. All to the floor. If I hadn't been in a wheelchair, I would not have had this memorable day. God Bless You. Highest Personal Regards, Dr M
What does your GP/doctor think about using a wheelchair with large tires? This will allow you to sit. Better than standing. This will allow you to go left or right, whenever you want...I'm just thinking whether this simple cardiac workout would not only make us more healthy, but allow our muscles to grow with exercise. Without exercise, all muscles shrink. I'm not ready to shrink. Got a wheelchair today and will keep data on my activities. Self-experimentation for me. And fun. Independent
Myasthenia Gravis, get a specialist. Your eyes are screaming this and you have all the symptoms. Have you been checked for this? Look it up and see if it fits. Have you had an EMG? And mestinon works wonders! Hopes this helps!
rebco77 1 year ago
@rebco77 I have been tested for numerous conditions, I am not sure about MG. I did have a EMG but it was only on the muscles in my right leg and feet which was giving me the most problems at the time. The problem is i have some many symptoms. I am usually told that my constellation of symptoms doesn't fit anything they are aware of. The only thing I know of that they do fit is Myalgic Encephalomyelitis. Interestingly the muscle weakness it causes had been likened to that seen in MG.
kaazoom 1 year ago
@kaazoom * One test is for antibodies against the acetylcholine receptor.[3] The test has a reasonable sensitivity of 80–96%, but in MG limited to the eye muscles (ocular myasthenia) the test may be negative in up to 50% of the cases. Have you had this done? This is the most common test.
rebco77 1 year ago
@rebco77 Unfortunately, although Myalgic Encephalomyelitis has been listed as a neurological disease since the late 1960's, many doctors no longer recognise it and it is usually assumed to be the same as CFS. Most of the real experts in CFS believe Myalgic Encephalomyelitis is not the same as CFS or is a sub-group. I have assumed this is what I have (one neurologist did diagnose this early on in my illness) as no doctors take me seriously any more!
kaazoom 1 year ago
there´s a video on youtube of a woman who got dystonia after a vaccination:
she has even much more problems than you, walking forward -
but the "strange" thing is:
if she runs, she can talk and run normal !!
But obviously it is not a psychological problem-
but there must be something in the impulses that goes wrong...
I don´t know excactly where...
but it´s very interesting!!
I pray, that you find out more, God willing!
Mikel
FallaciesDetective 1 year ago
Hellooo!
i havnt seen your previous vid so I may be out of the loop in terms of how this all started and how long its been going on. have similar problems and have basically been made by the neurologists to feel that im a bit of a mystery!
MegaDeeva 2 years ago
Yes, I can see a marked improvement in your walk when you go backwards. Has anyone tried massaging your legs to help prevent them from getting stiff (that helps me sometimes)? My dad is almost 70 and healthy for his age (seems healthier than me anyway!), except for a little trouble with his knees. He finds it much easier to go backwards when he's going down stairs- I don't know if that's relevant.
neelubird 2 years ago
No I haven't tried massage. I have been given some stretching exercises that can help for a bit. I do know that some types of action dystonia can react like this. I have found a couple of articles about people who have dystonia, who cannot walk forwards without their legs spasming, but can walk backwards ok. I'm not sure this is diagnostic though.
kaazoom 2 years ago
Either way, "it's all in your head". I'm sure you know what I mean. I wonder myself about my neurological problems and realize that they are intertwined and the "base source" doesn't really matter. I'm sure that your recent resurgence has a lot to do with your "anniversary" as it's all interconnected; as a fahter, I understand. . I would like to see a video from you of your perspective of things from the beginning... I think I may have a similar problem in the beginning stages.
parrotpilot 2 years ago
I am fortunate as I do not usually need a wheelchair, except if I go out somewhere for the day. I can manage short distances with a walking stick. I do have a mobility scooter but have problems using it especially for long period or in crowds. I get dizzy, lose concentration and suffer from overload. In fact most of my symptoms get bad sitting upright too long. I've been given some stretching exercises by a physiotherapist. She gave me exercises to improve my balance but they made it worse!
kaazoom 2 years ago
I hear you, as we both share the same issues here. Going places, seeing friends, eating out, watching a movie ~ I have recently found out that it is less tiring on me to use the wheelchair, plus it buffs my biceps. The scooters make me dizzy, so I usually end up crashing in to someone or some thing like a large, stacked section of cereal boxes. One by one. All to the floor. If I hadn't been in a wheelchair, I would not have had this memorable day. God Bless You. Highest Personal Regards, Dr M
DysautonomiaMD 2 years ago
What does your GP/doctor think about using a wheelchair with large tires? This will allow you to sit. Better than standing. This will allow you to go left or right, whenever you want...I'm just thinking whether this simple cardiac workout would not only make us more healthy, but allow our muscles to grow with exercise. Without exercise, all muscles shrink. I'm not ready to shrink. Got a wheelchair today and will keep data on my activities. Self-experimentation for me. And fun. Independent
DysautonomiaMD 2 years ago