A Bizillion Other Things...

[TiggerLenses]

I was just curious to what other (bizillion) stuff I could have aside from ALS when:

I've had 2 MRI's (!), 2 CT Scans (!), multiple blood tests all in the past 3 years (with the last CT & MRI, blood work being under a year ago)

&

isolated fascic's where muscle is depleting
depleted muscle
depleted strength with spasticity
overactive gag reflex (this one's fun!) + night time drooling
crappy reflexes
overall fatigue too


I'm about to actually go mad sitting here all alone thinking about ALS... I can't see another other thing this could be - if I hadn't done all the brain scans + blood work I might feel a lot better...

 

[lydia]

tigger,

Just because you have all those clean tests does not mean the only thing left on the table is ALS. I have a multitude of (neuro-confirmed) symptoms, had a bunch of clean tests as well, and am starting to suspect I may never know exactly what is messing with me....but honestly, if this is as bad is it gets, then I can deal with it. Life could be so much worse.

Take care,

Lydia

 

[TiggerLenses]

well I still need to go for an EMG
and like I said my leg reflex was off. yet babinski was fine. ?
it's the atrophy (and the gag reflex...never had such a thing in my life) that's really disturbing me. It's like my one hand has turned to stone, it's nowhere near as strong or as flexible as it was even a month ago. comparing the two hands in size is a joke. I'm positive this is MND. and my fascic's have become isolated, and seem to progress to a new area after a while (the same way the fascic's were on my left elbow are over to my right now... it's taken a while to progress... same fahsion...).
but the legs? both down .5 cm? weird... I thought it was asymmetrical? like my one hand is smaller & weaker than the other...
I don't understand how I don't have any fascic's in my hand (well barely, that i notice anyway...) - it's all at my elbow mostly - yet my hand is deteriorating... so are my feet (I should have shown the doc!)

I wonder if stress can cause MND, 'cause God knows these past 3 years have been the most stressful, draining, devastating of my life... I wouldn't argue that it's significantly contributed anyway...

and the fatigue. I'm always tired now. I can sleep the day away. no energy whatsoever.

 

[lydia]

Please be careful using the word atrophy. Just because your limb appears to measure smaller does not mean it is atrophy. It could be measuring error, it could be weight loss, it could be deconditioning....(the polite word doctors use when describing someone who is no longer as fit as they used to be because they don't try to stay fit....).

I also have a hand that has reduced grip strength, loss of fine motor control, and a thinned forearm. And no ALS.

Analyzing the twitches provides no insight into what is going on with you. People with a multitude of diagnoses, as well as those still searching, experience every possible permutation of twitching behavior. The patterns in your twitching are not going to lead you anywhere. I have had twitches for over two years, they ARE 24-7, but their geographic distribution, intensity, and other characteristics are always changing. For example, I would have a spot that might twitch for a good 6-13 hours at a time. And then I might switch back to a couple twitches in leg, now in arm, now in butt, etc...where they jump with lightening speed around the body. The latest seem focused on left leg. I have no doubt that will change shortly as well.

...get the EMG and put this past you. Is one scheduled for you? Can't remember...

Lydia

 

[planningguy]

Tiggerlenses,

I would echo Lydia's comments in terms of not obsessing over ALS and atrophy (I think that's a common theme in many responses ot your recent posts).

I thought I mentioned this in one of your other threads, but there are many forms of neuropathy that can cause the symptoms you mention. There are myopathies and flavors of myositis. But it doesn't even have to be that foreign. You may have had a virus of an infection reek a little havok with your nervous system. You might have BFS severly aggrevated by stress and anxiety. All of this doesn't matter because none of us here are doctors. We can't diagnose you. Why you would trust the offhand comments of a virtual stranger, who is probably Googling and reading wilkipedia articles, over a medical professional is beyond me.

I don't know what you're reaching for. If its reassurance, I think a lot of people have tried to tell you there are a lot of bridges to be crossed and possibilities that have to be explored. If you're wanting someone to confirm or play with your fear, its not going to happen. Just as no one here will tell you that dull throbbing headache is probably a tumor, or that the rash that never seems to go away is flesh eating bacteria, no one is going to say, "Sounds like ALS," based soley on a description of your symptoms in a handful of posts.

I have many of the symptoms you mention, but my local neuro and a neuromuscular specialist have both said there is no indication its ALS. Have you been to a neurologist yet? Many of your posts mention waiting to get in on clinic hours. I would just hold off til the neuro, get your EMG, and move on.

Best wishes,

Robert