Old 04-24-2016, 11:56 PM #16 (permalink)
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Default Re: hoping to be wrong

Merrs, there's not much to see in any photograph--the doctor really has to tell. But I must say the index finger looks out of place. Worse, you said the pinky isn't moving? At all?

Even if there is atrophy there, that's not neccesarily ALS. Other radiculopathies can do that.

Regarding twitching. My wife had no twitching at the beginning, but later we saw some. It seemed to be that when a twitch developed, that area would be the next to become paralyzed. Some people report lots of twitching. And again, twitching is not usually ALS. Lots of things cause twitching.

Finally, I'm afraid while creepy worms under the skin can appear in ALS, they can appear in other stuff, too.

I guess I haven't given any help. Maybe someone smarter than me will come along.
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Old 04-29-2016, 02:03 AM #17 (permalink)
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Default Re: hoping to be wrong

Your hand looking like that could be a form of arthritis. But, I'd definitely get in checked out.
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Old 05-05-2016, 10:17 AM #18 (permalink)
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Default Re: hoping to be wrong

Mike,
The pinky moves in but doesn't have much grip(can't open a jar if someone else puts the lid on). When my hand is open flat the pinky won't go back against my ring finger and it won't straighten anymore than the photo. It is not tight, just doesn't do what I ask. No pain and I don't think my ring finger is out of place but maybe, I am hypermobil. The fingers move good at that knucle(the closest one to the hand) but not the further ones. Also now my ring finger is about the same as the pinky and my left hand is almost as bad as my right. And across my shoulders is where the creepy crawly twitchy is.
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Old 05-05-2016, 10:53 AM #19 (permalink)
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Default Re: hoping to be wrong

Kim,
I wouldn't think arthritis because there is no pain involved.
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Old 05-05-2016, 02:16 PM #20 (permalink)
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Default Re: hoping to be wrong

Oh, I thought I had mentioned in my initial post(but didn't). I can't move my toes, when I try to curl them they sorta spread(?) In between the 2 small toes and the three bigger ones.
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Old 05-06-2016, 12:04 AM #21 (permalink)
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Default Re: hoping to be wrong

There is hypermobility associated with genetic disorders that can have features of myopathy, such as connective tissue disorders. Who/what specialty are you seeking care with?
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Old 05-06-2016, 01:12 AM #22 (permalink)
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Default Re: hoping to be wrong

I am scheduled to see a neurologist on Tuesday. I see a cardiologist for autonomic dysfunction. And my primary care believes that I have Ehlers danlos hypermobility type.
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Old 05-10-2016, 03:27 PM #23 (permalink)
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Default Re: hoping to be wrong

Well...sooo. Went for my neorology exam this morning. Hyperreflexia at the knee, other reflexes absent. No plantar response at all. No toe movement, definate hand weakness. He order 3 bloodtests(alt,ast,and ck) and an emg. Wait til July for emg unless someone cancels. He was pokerfaced and refused to speculate or rule anything out. Thanks again for listening(reading).
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Old 05-10-2016, 06:25 PM #24 (permalink)
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Default Re: hoping to be wrong

You said your PCP did x-rays. Is there a reason no MRIs have been done? Sorry you have to wait so long.
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Old 05-10-2016, 07:18 PM #25 (permalink)
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Default Re: hoping to be wrong

Kim,
Mri was done on the lumbar back in February.
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Old 05-14-2016, 02:48 PM #26 (permalink)
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Default Re: hoping to be wrong

Also, I mentioned hypermobility to my neuro and he said that isn't the cause. My blood work also came back fine. My CK came back 32, is this a good sign?
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Old 05-14-2016, 03:12 PM #27 (permalink)
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Default Re: hoping to be wrong

Merrs, you're doing right by following up with your doctors. Let us know what the final diagnosis is.
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Old 05-14-2016, 03:42 PM #28 (permalink)
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Default Re: hoping to be wrong

Ehlers-Danlos is a connective tissue disorder. CTDs can present as myopathy, as I had mentioned. If that emerges as the leading differential, I would see a medical geneticist somewhere like OHSU.

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Old 05-14-2016, 03:48 PM #29 (permalink)
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Ok....just uuuuuuhgggggg waiting around for the next step is trying and I don't like stressing my husband. He is rather convinced I am having motor neuron issues and I am trying to convince us both otherwise but I am failing. My pcp who is a fnp saw me yesterday and based on whatever the neuro put in his notes has declared me permanently disabled and that I should begin the ssdi process. I was hoping that the ck results would indicate something but there is a lot of conflicting information.
Anyway, I have 5 younguns that want my attention while I can give it (what ever this is is both slow and fast at the same time, slow because I can still do many things; yet fast because there is something that gets harder or impossible every few days...they are small things in many ways but add up quickly. The latest is that my typing is off...I am on a touch screen phone and typing with my thumbs and they don't do what I ask, I have to type with the stylis and I can't type on a keyboard anymore) I am a social buffoon and I hope I don't hurt anyones feelings or offend, I keep posting here because I don't want to discuss nameless symptoms with the people around me because there is no diagnosis yet but I want to chew someones ear off about it. And it really seems silly to me to complain about something like my thumbs on a touch screen. Ok enough, off to the younguns. Got to get out of myself!.......Thank you all for listening!
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Old 05-14-2016, 03:59 PM #30 (permalink)
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Default Re: hoping to be wrong

Have you asked for a copy of the neuro notes? You should have copies of everything for your own records anyway but your statement about the pcp recommending ssdi based on whatever the neuro notes said makes me think you don't know? I do find that what they commit to paper sometimes has a different tone than what was said in person. Also if you are going for ssdi without a firm diagnosis you need to know what is and is not documented
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