Update from me

[sdsyd]

What a few weeks it has been! Allergic reaction to baclofen causing brochiospams, controlled quickly with steroids and albuterol. Dr. says my lungs still sound really crummy.
Dan came with me to Dr. today and no results from 2 MG panels. Maybe they were sent to Egypt? Labs from hospital visit show I am still macrocytic in RBC's?? Begin trialling valium tonight for cramps in hands/feet. Have not worked in over a week. She is letting me try work Wed and Thurs. this week, but feels we need to consider quitting due to the progression and that my neuro will better help me pursue this. She will call with MG results. The Mayo never gave her the ppwk, so we brought it along for her to copy and again- right across the top it says reason for referral: Suspect Motor Neuron Disease
To recap: Went to Mayo and were dismissed rather quickly with a Dx of B-12 deficiency and left hand dysfunction of uknown etiology. Came home- hopeful and pushed it to the max. Cleaning like a maniac and began hking with my dog, etc etc. Then symptoms worsened greatly. Now unable to drive stick shift, lift a gallon of milk or walk long distances without problems. I have fallen twice while squatting to get things out of the cupboard- on and on. Sorry.... More waiting, more hoping. More trying to keep life as normal as possible here for my loving husband and 3 awesome kids.
and SICK AND TIRED of having to talk about this, deal with it. WANT THE OLD SILLY ME BACK AGAIN!!!

LOVE YA ALLS!

Cindy

[awieleba]

Cindy~

I really feel for you! you are going through a rollar coster ride.

I feel the same that I am trying to keep normal for my hubby and 3 kids and friends and family for that matter.

and I agree, I want to be the smiley active me again!

I wish you the best!!!!!!

[CindyM]

I am sorry to hear this, Cindy. The best adivce I can give you is that, no matter what this turns out to be, proper rest will help alleviate your symptoms. THis is hard to do with three children, but as much as you are able to "take it easy" you will feel better. Hugs, Cindy

[lydia]

Hi Cindy,

I am sorry to hear how you are doing; I wrote earlier that I have been following your story especially closely because of the B12 issue and even the left hand (mine isn't quite right, but not too bad yet; just annoying). I also went out and I think over did it-pruned the hedges with hedge clippers (not the electric kind). It took me forever because I had to rest my arms every cut, but wow those hedges look good now. But after I was unable to pour from a gallon of milk-I could pick it up but could not turn the wrist or whatever it is you do to pour milk. Then I grabbed a beer (I had just cut the hedges...) and I could raise it but that final part where you tilt your wrist-it wasn't happening. The hand just kind of shook. I did have to get creative. This lasted for nearly 3 days and my wrist-tilting ability has finally returned. Anyways, I just wanted to share my bizarre experience because of your comment about the gallon of milk.

I hope your test results turn up soon. I can't believe you are in a situation where you are considering stopping work, this is just incredible. You had good news! It seems like such a turn, but maybe you really did just over do it. Please just rest, did the doctor's at Mayo say how long it would take to get back to normal from the B12 deficit?

Lydia

[sdsyd]

Hi guys- Thanks for the encouragement. I tried work yesterday, modified of course and did well until 11:00 or so, pushed it til 1:30 and came home pretty exhausted. Today My superpowers ran out about 10 and I left at 11:30 . My work is very understanding, and at this point until I can get back in to the neuro I am not willing to stop trying. I LOVE MY JOB!! I am going to continue to adjust my work schedule and keep my caseload real low. The valium so far hasn't helped with the cramping, but it is relaxing for sure and I am only taking half of a 5 mg tab at night.

Hope all is well with everyone and I will be checking in when I can!

Love,
Cindy