Firstly, I'm keenly aware what some of you are going thorough, and I'm in awe that you all still give advice and aid to others. A truly good sign of humans overall. Thank you. And I wish nothing but goodness to you all.
I'm terrified I have ALS. My main symptoms are arm/leg weakness, some twitch, and hyper reflexes in my knees. I also get some twitch in my neck, and I've noticed my tongue is lopsided.
I've had a horrendous couple of months in terms of health, I've been ill for about 10 months since a bad bout of shingles (which started at C4 went into my right ear and down neck). Since then I've had severe issues with balance (veering to left, feeling like I'll fall), weakness overall, vertigo, 'dead' right arm sometimes, and I've been unable to live normally - like walk/drive/work.
Since then I've been diagnosed with Chiari malformation and a small brain anyeurism (which they've determined was incidental finding and is low risk rupture, so just annual scan monitor). Chiari unlikely to be causing symptoms, as I've no headaches.
Ive seen a neurologist and two neurosurgeons. Neurologist review in Nov. Reflexes were all clear, unremarkable. Same with neurosurgeon in Jan. I'm back with neurologist this week, and terrified because my symptoms are progressing.
I no longer believe, oh that won't happen to me. At 35yrs and after the past year of being ill, and diagnosis. I can't rule anything out. Unfortunately because all my scans (brain and spine) are clear, it doesn't leave a lot of other reasons. In a way I want to 'try' to be prepared of any other nasties that may arise. Crazy I know.
If I just list some of my symptoms, is there anyway any of you kind people could tell me if any of them sound like ALS (please):
- Heaviness weakness in right arm, from shoulder, down side of arm, to forearm. Weakness. Grip is ok still. It can be terribly bad, sore, weak, sometimes improve. Feel like you can't lift it. It's been happening 4/5 months but worse lately.I've tried the Hoffmans test, pretty sure its negative, but hard to do on yourself.
- Shaking in arms. Mostly right. A lot. Entire arm.
- Right foot/leg weakness, pain or cramp back calf, front shin and front of foot. Sometimes an ache in hip. No drop foot. Negative Babinski (I think). Happening about 2months.
- Hyper reflex on right knee, by neurosurgeon. Pretty sure that wasn't there in Nov.
- Some jaw twitch, like my jaw does a tiny seize. I've had neck seizes in past at back head, which I'm not worried about. These are new.
- I've noticed my tongue is lopsided to left, and my soft palate on right droops down more than left.
- Some twitchs in my right leg, especially above knee. It's like the leg flexes, altho I'm lying down in bed. Some other twitches which I'm trying to ignore, they don't seem v.frequent.
- I do vestibular physio exercises daily. One involves walking while throwing ball between hands. I've dropped ball on few occasions on my right hand. Also dropped one phone, right hand again, smashed screen.
- pretty sure I don't have any muscle wasting.
- have had neck issues a long time, neck seizing stiffness, soreness. Likely the Chiari.
- clear MRI spine all clear, so nothing like disc issues etc.
Is there anyway my symptoms could have increased so severely in 3 months that neurologist will now think ALS?
I'm terrified to get an EMG as in a weird way I don't want to know. I know I'll obsess even if its negative ALS, but has 'findings'. I know I'll obsess if I don't get it done to rule out anything. I do absolutely appreciate that this isn't a real dilemma in comparison to your realities.
I'm well aware I have severe anxiety too, which I know doesn't help at all.
It's just I hate the feeling like my right arm and leg are wasting away. Of feeling weak all down one side, while walking. Feeling almost like I'm having the slowest progressing stroke of all time (but loads scans MRA/CTA apart from anyeurism would've showed issue).
I've started walking more, as my balance has improved slightly past few weeks. More exercise than I've done in a long time. Which I do realise may be increasing arm/leg issues (but both which were there before starting exercise).
Any help at all really appreciated. And again, I'm well aware my situation isn't yours, and so I'm sorry for asking for advice/help.
I want to be as prepared as I can be for neurologist appointment this week. The last time I was there I was told about anyeurism, it was the worst day of my life (at least so far).
I'm also really worried she'll suggest EMG test, which as I've explained I almost don't want to know answer.
I hope against hope she'll say reflexes are all ok, and that symptoms aren't ALS and that I don't need any tests.
I'm terrified I have ALS. My main symptoms are arm/leg weakness, some twitch, and hyper reflexes in my knees. I also get some twitch in my neck, and I've noticed my tongue is lopsided.
I've had a horrendous couple of months in terms of health, I've been ill for about 10 months since a bad bout of shingles (which started at C4 went into my right ear and down neck). Since then I've had severe issues with balance (veering to left, feeling like I'll fall), weakness overall, vertigo, 'dead' right arm sometimes, and I've been unable to live normally - like walk/drive/work.
Since then I've been diagnosed with Chiari malformation and a small brain anyeurism (which they've determined was incidental finding and is low risk rupture, so just annual scan monitor). Chiari unlikely to be causing symptoms, as I've no headaches.
Ive seen a neurologist and two neurosurgeons. Neurologist review in Nov. Reflexes were all clear, unremarkable. Same with neurosurgeon in Jan. I'm back with neurologist this week, and terrified because my symptoms are progressing.
I no longer believe, oh that won't happen to me. At 35yrs and after the past year of being ill, and diagnosis. I can't rule anything out. Unfortunately because all my scans (brain and spine) are clear, it doesn't leave a lot of other reasons. In a way I want to 'try' to be prepared of any other nasties that may arise. Crazy I know.
If I just list some of my symptoms, is there anyway any of you kind people could tell me if any of them sound like ALS (please):
- Heaviness weakness in right arm, from shoulder, down side of arm, to forearm. Weakness. Grip is ok still. It can be terribly bad, sore, weak, sometimes improve. Feel like you can't lift it. It's been happening 4/5 months but worse lately.I've tried the Hoffmans test, pretty sure its negative, but hard to do on yourself.
- Shaking in arms. Mostly right. A lot. Entire arm.
- Right foot/leg weakness, pain or cramp back calf, front shin and front of foot. Sometimes an ache in hip. No drop foot. Negative Babinski (I think). Happening about 2months.
- Hyper reflex on right knee, by neurosurgeon. Pretty sure that wasn't there in Nov.
- Some jaw twitch, like my jaw does a tiny seize. I've had neck seizes in past at back head, which I'm not worried about. These are new.
- I've noticed my tongue is lopsided to left, and my soft palate on right droops down more than left.
- Some twitchs in my right leg, especially above knee. It's like the leg flexes, altho I'm lying down in bed. Some other twitches which I'm trying to ignore, they don't seem v.frequent.
- I do vestibular physio exercises daily. One involves walking while throwing ball between hands. I've dropped ball on few occasions on my right hand. Also dropped one phone, right hand again, smashed screen.
- pretty sure I don't have any muscle wasting.
- have had neck issues a long time, neck seizing stiffness, soreness. Likely the Chiari.
- clear MRI spine all clear, so nothing like disc issues etc.
Is there anyway my symptoms could have increased so severely in 3 months that neurologist will now think ALS?
I'm terrified to get an EMG as in a weird way I don't want to know. I know I'll obsess even if its negative ALS, but has 'findings'. I know I'll obsess if I don't get it done to rule out anything. I do absolutely appreciate that this isn't a real dilemma in comparison to your realities.
I'm well aware I have severe anxiety too, which I know doesn't help at all.
It's just I hate the feeling like my right arm and leg are wasting away. Of feeling weak all down one side, while walking. Feeling almost like I'm having the slowest progressing stroke of all time (but loads scans MRA/CTA apart from anyeurism would've showed issue).
I've started walking more, as my balance has improved slightly past few weeks. More exercise than I've done in a long time. Which I do realise may be increasing arm/leg issues (but both which were there before starting exercise).
Any help at all really appreciated. And again, I'm well aware my situation isn't yours, and so I'm sorry for asking for advice/help.
I want to be as prepared as I can be for neurologist appointment this week. The last time I was there I was told about anyeurism, it was the worst day of my life (at least so far).
I'm also really worried she'll suggest EMG test, which as I've explained I almost don't want to know answer.
I hope against hope she'll say reflexes are all ok, and that symptoms aren't ALS and that I don't need any tests.