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Hi. I’m sorry you’re been going through such a roller coaster. I’m much in the same boat. Been following your updates intently. If you’re open to sharing, I’d really like to hear how things turned out at the Mayo for you? I’ve seen six neurologists and still nothing definitive. I’m thinking about booking an appt at the Mayo Clinic as well.
Does thumb shaking a indicator of ALS? By shaking I mean the entire thumb is shaking not just a single muscle. You can see the movement clearly
Not really sure how to navigate this site but pm me.
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Fasciculation1
Unfortunately, we don’t have the ability on here to PM. We can only communicate like this on profile posts I believe.
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Fasciculation1
I’ve been keeping up with your posts. I’m really sorry about what you’re going through. I have many similar problems with most of them being lower motor neuron dominant. I go for my fifth EMG in a week and a half to see if it shows further denervation issues.
Hey man. May I ask why do doctors think it's ALS if it has been 3 years and you are so young? The timeline progression would be extremely rare. What did your neuros say?
Good morning. I’m sorry you’re going through all of this. I know it’s very frustrating. We have some very similar symptoms, especially the widespread atrophy and twitches, to include lower thighs and knees. I’ve been going through tons of testing for the last 18 mos and still no answers yet. If you happen to find any answers or get a diagnosis, I’d appreciate you sharing.
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Fasciculation1
I go for my fifth EMG next month. They wanted to wait six months from last to see if I progressed. Had the full workup (MRIs, blood work etc) and nothing showing up. I fear my fifth EMG is gonna show progression. The only failure I have is not being able to right heel walk. My rt tibialis anterior is about 80% atrophied.
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Fasciculation1
It’s weird because things seem mostly confined to my right side but wide spread, which the ppl here say isn’t how als started.
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Fasciculation1
I think it’s als as most other stuff has been ruled out
3 month neuro clean... 8 month neuro with neuromuscular specialist clean with fasciculations on exam and emg in leg..1 yr with diff neuro diagnosed with chronic denervation in other leg, no neuropathies ? Fasciculations + denervation = ?? Confused,
Hi,
We have common symptoms. In addition my joints started making sounds since Dec. If there was a way to share, I could message you. But I will ask for a consult with a different neurologist. My neuro is basing his judgement from first week of Nov when I was fine. Now, its bad fatigue, joints, breathing issues, grip weakness, etc.
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soulkatha
extremely sorry. wish there was an edit option. I meant "I am choosing to believe I don't have an als"
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Annony12
I am choosing to believe it isnt ALS as well. I finally got in with a different PCP who is at least looking in to it further. I have an EMG scheduled for this Friday. let me know how yours goes :)
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soulkatha
Hi.. how was your emg? My rheum were all normal. Saw a second neuro muscular today. Said I had lots going on and for my age they don't fit together. He performed a thorough clinical weakness test which I am pleased about. He didn't even mention als. Said I had good strength. Emg and brain mri have been scheduled for next month.
I literally have the same symptoms as you. My fingers (the pinky and ring finger) on each arm have spasticity which is worse open waking up. There is a pulling sensation which pulls them downward to the palm. I also have what you described in your left shoulder, range of motion pain inside the joint. Hyper-reflexive, positive Hoffman and mild clonus in left arm. full body fasciculations.
Hi Laurie, sorry to bother you, but I wondered if you could email me the BIPAP notes I have seen mentioned in various posts. My brother has just received a machine and has had a not very good night. He is ringing the clinic but I wondered if there was something in your notes that might help. Many thanks, Sam
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Samkl
I should mention it is a Resmed Bipap S9.
Hi, I am sorry to disturb you, can I ask you if you found out what was wrong?
Thanks for your time.
Hello. Did IBUDILAST WORK for you?
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jethro
no, i throw it away. i tried orally, but i couldnt. make yourself a pills, it is easier way.
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jmendozd90
why did you throw it away? Why you couldn't? Thank you! ...I'm not yet diagnosed, but, my swallowing is declining; on November, a speech pathologist told me I had mild pharyngeal weakness, reduced tongue base reduction and reduced epiglottis inversion. I want to start taking ibudilast before it is too late.
Hey there. Saw your posts, how are u doing?
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franklind
Terrible to be honest.
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Lasx
You got any issues swallowing or talking? How old are you?
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franklind
I just turned 29. I have issues with my voice and some issues swallowing. The voice has been getting progressively worse but I don't notice the swallowing progressing the same.
Did you have your MIP or MEP finally tested? My fvc was normal but my mip and mep were low as was 2 volume tests including rv which points to als.
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