Long time no post- sorry

[sdsyd]

Hi everybody! Sorry for the gigantic lag in updates. I must admit I have been trying to stay away from this forum so that the ghost of Xmas past doesn't haunt me anymore, if you know what I mean.

I do come and check in every once in awhile to see how folks are doing. I do miss the friendship I found here. Many folks have pm'd me and I have read and not replied- for this I am sorry.

I am still UNDIAGNOSED. I am still in the process of getting on disability. My symptoms are about the same, with the exception of decreasing endurance. When I went to University of Colorado- she said that my arm looked a bit better, my leg about the same.

A student performed the EMG/NCV this time around.

She said the only thing she can think of is paraneoplastic syndromes- and didnt think it was CIDP anymore... so we are continuing to look for those things. I see a geneticist in November and have a colonoscopy this month sometime. They have done some extensive bloodwork for anti gated potassium and calcium channel blockers? Which were all negative.

My family/friends and community held some fundraisers for our family and I am SO SO happy to report that as of TODAY I owe not ONE single PENNY to a medical bill. THANK GOD for placing beautiful people in my life.

I am very frustrated and losing hope that they will ever figure out what is wrong with me. Today my Dr. ordered a 10 month extension on my wheelchair- but no one has answers.

Still walking short distances! Did try a stint as a sub. teacher in the elementary school- that was laughable- as I tripped often and the kids had a complete HEY day. I am not used to unruly children, as mine are perfect. ( ha ha)

Apologies for the humdrum update. I will check in again soon and continue to pray for "all my people on the forum"

Much Love,

Cindy

 

[Zaphoon]

Hey There Cindy!

Thank you for the update! I sure hope they get this figured out for you very soon!

Zaphoon

 

[lydia]

Hello Cindy,

Sorry to hear you still don't know what is going on. I can't believe you subbed! That must have been insane! I teach only one class twice a week and can barely make it through. And that is with adults! And you with children....I hope they were at least entertaining.

Lydia

 

[rose]

Hi Cindy,

Thanks for posting an update. I really wish you'd reported that all is well for you now though. How disappointing that you seem no closer to a diagnosis. And yes, I totally "get" it about ghosts of Christmas past. (Shivers!)

You said the doctor thought your arm was a little better... do you perceive it to be? and is your other one still normal?

Don't be discouraged. Its very hard to not know what is wrong, we all understand that.

Big hugs to you! You've been missed.

 

[planningguy]

Cindy,

Good to see an update from you. Like the others, I'm sorry you don't have an answer yet, but I'm glad to see your humor is still intact.

Best wishes,

Robert

 

[lydia]

And Robert, it is good to hear from YOU as well! Wondered how you were doing. Don't be a stranger.

Lydia

 

[ktmj]

Thanks for the update Cindy. Wishing you the best!

 

[planningguy]

Lydia - Thanks for the warm wishes. I am doing well. Still no real answers, but as things seem to be moving slowly, I just keep on trucking. I'll probably head back to my local neuro at the end of the year for a follow-up.

In the meantime, I pop on from time to time to see how folks are doing. Been really busy with a new house, and a lot of projects at work.

Take care,

Robert