A thank you and an update

Status
Not open for further replies.

Babycakes

Active member
Joined
Mar 24, 2017
Messages
32
Reason
DX MND
Diagnosis
04/2017
Country
US
State
CA
City
Pacifica
Just thought I'd say hi.
I have MND and have been trying IVIG for the past 8-9 months. We just stopped it....9 months ago I had symptoms/EMG changes in only my right arm...now I have some subtle changes in my back and left hand (although I can't tell that there are any changes).

I'm still working, but a bit less. I like my job, and its a space where I can pretend nothing is wrong...that's really nice.

No clue how fast or what will happen tomorrow, but that's life.

I'm grateful for you all sharing, it helps to read sometimes.
Kim
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,118
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Welcome Kim. I notice you’re from Pacifica. Are you following at Forbes Norris? You might be a good candidate for the NurOwn stem cell trial that they are doing (see my thread under Drug Trials), though I don’t know if the recent IVIG would disqualify you.

I hope your progression remains slow.
 

Babycakes

Active member
Joined
Mar 24, 2017
Messages
32
Reason
DX MND
Diagnosis
04/2017
Country
US
State
CA
City
Pacifica
I don’t think I’d qualify. My progression so far has been really slow. I first noticed cramping/weakness in my hand about 3 years ago. The trial sounds fascinating though.
 
Status
Not open for further replies.
Top
AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks useful features of our website. For the best site experience please disable your AdBlocker.

I've Disabled AdBlock