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Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,857
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
I just came back from the neuro and of course, he sent me down the hall to Dracula's department where a fair amount of blood was sucked from me. For now, it is still looking more like PLS than anything else. The bloodwork today is being tested for GM1 antibodies, other antibodies, sed and cpk rates and who knows what else.

He also thinks I will not totally lose my voice.

He doesn't think my shoulder problems are related to the neurological issues and neither does the doc at the ALS clinic (I spoke with him last week). The clinic doc agrees that it could be PLS.

No meds which is fine with me. The leg cramps have been going on for so long that I'm use to them and the stiffness is a pain in the neck (true and pun intended) but that pain is tolerable and there is always ibuprofen. Next visit in 3 months unless the blood shows something requiring attention.

Zaphoon
 
I feel CONGRATULATIONS are in order!

I would trade my ALS for PLS in a heartbeat.

I truly hope it never turns in to ALS for you!

I also wish you did not have either!
 
HellOOO Spastic King!

Well, I think the good news is, they say your voice will not be totaled. Although I don't see how they would know that. So, is this all good news for you or what? If it is PLS let's just hope it stays that way. Are you hoarse? Has your voice changed? I started out with being hoarse, to voice change. Now the mute button is currently in the ON position. I am glad you're getting close to an answer.
 
Joel,

Thanks for the well wishes! I'm with you!

Betty,

The voice gets hoarse and week. After the doc stated he didn't think I'd lose it completely, he followed it up by saying he could not predict anything with certainty.
 
so.... what are GM1 antibodies? Should I know this? I'm glad you didn't get any worse news anyway. As for your shoulder, is that to be investigated further?

Try not to tire your voice, try to not attempt to speak over ambient noise, etc. I've lost all low tones completely ~ can still talk high pitched baby talk to the animal menagerie here, although I get a good bit of a double reed sound effect at times, there is no volume at any pitch level.... I've never been a loud talker anyway, but I'm barely above, or just at a whisper after the first few words now. However, when you figure I've been voice challenged for 2+ years, that is not too bad really.
 
Rose,

Elevated GM1 antibodies are commonly found in neurological disorders like ALS, MS, multifocal neuropathies and lupus. The doc did say he'd be checking for auto-immune diseases because they run in my family.
 
Kim, so glad that there seems to be a plateau going on, with nothing worse showing on the horizon. Good news is always relative when we're talking mnd, but it sounds mighty good to me that you're hanging in there.
 
Beth,

Thanks for the support! How could I not hang-in there when I have someone like you setting the example as the "hanging-in-there queen"?

I'm in this for the long haul, voice or no voice, legs or no legs, arms or no arms.
 
Kim-
Yes, that is great news actually-love the part about voice or no voice, legs or no legs, arms or no arms,
What an inspiration you have been and will continue to be!
take good care,
brenda
 
Ahh, the good news, bad news scenario. Seen a lot of them but yours is a better one I think. Take R easy.

AL.
 
Still pulling for a pinched nerve Zaph! Love the attitude - keep on keeping on.
 
Hi Kim,
I am hoping that they find antibodies!
Laurel
 
I, too, am still hoping and praying that it is PNS! ;)

Thanks for the update!
 
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