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sdsyd

Distinguished member
Joined
May 22, 2008
Messages
329
Country
US
State
sd
Sorry I haven't been around on the boards much, I miss hearing updates on everyone and your friendship. Things have been crazy around here. I did have my spinal tap and it was negative for any antibodies. Could have went on with a sural nerve biopsy, etc.

So- basically what the word on the street is- we don't have a Dx to hang our head on. I have NOT had any progression since Fall/early Winter, but no return of anything yet either- and no symptoms have went away.

We(dr's, hubby and I) decided to WAIT before trying any sort of treatment since the progression itself seems to have halted. The most recent studies show that trying to treat CIDP or MMN with the WRONG thing can actually worsen your symptoms and it seems like there's about a 1/3 chance without the antibodies to prove exactly what is going on: meaning- 1/3-no change with treatment- 1/3-improvement, 1/3 worsening...

My local neuro said " You are definately sick, but we just don't have a name badge to pin on it yet" I follow up next month. From my understanding some of these things NEVER get diagnosed. It is complex. I am just THANKFUL that it has not gotten worse and THANKFUL for the function I DO have.

I'm ok where I'm at for now. I am still working 3 dys a week- only 3 hours a time, but am proud to still be working.

My Grandma is on a downhill slide, but we knew she didn't want to fight. Her only living daughter- my Aunt is in OR and just had major surgery last week for cancer and cannot travel. MY Uncle from AZ will be here in 2 days. So, for the mean time my siblings and I are the primary advocates for Grandma. I go up about 4 days a week to be with her.

My kids are all great, and other than that~~ its life in general for the Miller family.

Hope you are all doing well. I think of you often, and continue to pray for "my people on the forum" but didn't have any exciting updates- basically I wanted to check in on you guys.

Much Love and Respect-

Cindy from FROZEN tundra- SD.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
Cindy,

Thanks for taking the time to update us....NO progression is definately a good thing.
Sorry about Grandma Rose.
 

lydia

Senior member
Joined
Jan 25, 2007
Messages
677
Country
US
State
ny
Hi Cindy, it was nice to hear from you. I understand about the no diagnosed conflict, but thank goodness for no progression (knock on wood). I am sorry your grandma is having such a difficult time. But how lucky she is to have you-

Lydia
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
Cindy,

It was good hearing from you again. Its nice to have things not getting worse, especially with you at your grandmother's side 4 days a week.

Here's hoping for a big turn-around for you!
 

joelc

Extremely helpful member
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
I can anly agree with what everyone else has already said! It is great to hear from you!
 

planningguy

Senior member
Joined
Jun 5, 2008
Messages
556
Country
US
State
Wyoming
Cindy,

Good to hear from you. I had been wondering how things were going in you neck of the woods. Glad the progression has stopped. Perhaps you are turning a corner. Let us know how things pan out...

I hear you on the frozen tundra end. That cold snap and ice storm was just plain rude in the middle of our almost spring weather.

Take care,

Robert
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
cindy-
So good to hear from you! Glad life is "crazy" with your frozen tundra and all...from my family to yours, we wish you a great week, and keep us posted,
brenda
 

ktmj

Distinguished member
Joined
Oct 17, 2008
Messages
421
Country
US
State
Dixie
Hi Cindy! Good to hear from you. Summer will come in time!
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
Cindy,

I think of you often, and have wondered how things were going! That is wonderful news that you're not seeing progression!


I'm sorry to hear that your grandma continues to decline. I hope you and she are enjoying the visit from your uncle :)

Please don't be a stranger.
 
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