Welcome!

Well...here begins another chapter in my crazy life. I've embarked on the public display of my inner thoughts. I suppose this is a bit cathartic. I've had what might be considered the 'winter of my discontent'. But this blog will be about my life - the ugliness and the beauty. My children, my husband, my work, my health, my dreams, my chaos; but it may focus initially on my quest for a diagnosis.

I begin this blog waiting. Always waiting.

Medically, the past year has been difficult. I have been in 'limboland' for Multiple Sclerosis. Its quite possible I don't have MS but something is not right and this blog is my fight for an answer.

My symptom timeline:
Aug - Sept 04 - intermittent numbness and tingling in my right sided limbs
- right sided weakness
- one episode of right sided numbness in my face; lasted only about two hours

Oct - Nov 04 - Saw Dr. Kraft at the Urgent Neuro Clinic at the Foothills Hospital
- no real explanation; calling it migraine aura without headache
- EEG in November, MRI in December

Dec 04 - MRI shows one lesion; radiologist recommends repeating the MRI in 3 months time to see if the lesion is significant

Jan - Feb 05 - Saw Dr. Kraft at Regular Neuro Clinic
- Eye issues: right pupil larger than left, color perception in right eye decreased but not no evidence of optic neuritis
- noticed I don't move my right arm when I walk but didn't know if it was significant
- ordered repeat MRI and VEP (visual evoked potentials) to check my optic nerve
- talked about having to do a LP (lumbar puncture) at some point in the future
- told to call if there are other problems
- End of January, after working a weekend I began twitching a few times every minute. It lasted over 24 hours and after seeing my doctor, I was sent to Foothills emergency to see the neuro on call. When I arrived at the hospital, I could no longer walk. I got out of the van at the hospital and it was as though my brain couldn't talk to my legs anymore and I'd forgotten how to walk. Kirk helped me into the hospital. CT scan ruled out stroke and the neuro had no real explanation. She offered to admit me for testing but I declined. I didn't think our family needed any more chaos. She sent me home saying I should follow up with my regular neuro. There was no explanation.
- The twitching stopped eventually but I still had trouble walking for another ten days. Each day it got a little better but it was one of the toughest times of my life. It tested my pride and really made me grateful for the things we take advantage of - like walking and talking. I boldly continued on with my head up - schlumping the whole time - and returned to work a week later.

Mar - Apr 05 - The episodes of difficulty walking seemed to return for about a week out of every month. I would have two or three 'good' weeks and then my walk would be off for 7 or 5 or 3 days. It didn't seem to have any rhyme or reason - but it usually was preceded with fatigue. Different than feeling 'tired' or 'sleepy' - I would suddenly just feel like I needed to lay down or I would fall over. I'd fall into a dead sleep - the only thing similar was the sleep that come with the first part of pregnancy - and when I woke up and stood up...my walk would be off.
- In this time period I had my VEPs, a repeat EEG and a repeat MRI. I heard from my doctor that the MRI remained unchanged. I hadn't yet heard from Dr. Kraft's office

May05 - Last week I saw Dr. Kraft. He is referring me to the MS Clinic - not b/c he has a diagnosis for me but b/c he cannot diagnose me.
- MRI showed two lesions - both small and not in a spot typical for MS
- VEPs showed a delay in one eye but not so abnormal that it was clearly optic neuritis
- EEG was normal
- I told him that my funky walk comes back after I come out of the shower or bath; he says this is suspicious of MS but that the twitching isn't typical. Since he felt like he was out of his specialty (movement disorders) he was going to refer me to the MS Clinic at the Foothills. He said he didn't think it would take too long to hear from them - but whether that means 3 months, 6 months or a year I don't really know. He said he would leave the LP to them as there were changes in protocol happening and they would know better what was going on.


So that's where I stand. I think that its a really good step being referred to the MS Clinic. I know it doesn't guarantee a diagnosis of any kind - but maybe, just maybe, they will be able to decipher the test results a little better.

I woke up late Friday evening after falling asleep in my lazy boy to discover that my walk was once again 'off'. I've decided to name the crazy walk 'the funky chicken' - so from now on in my blog - that's what I will refer to it as. My Funky Chicken.

This latest episode has been tough emotionally for me. I guess since it had been almost a month since I'd had any Funky Chicken - I had convinced myself that maybe it was gone for good. But its reappearance has made me realize that its not gone and I'm thinking that maybe it will never be gone. Maybe this damage is permanent. Will there ever be days again when I don't wake up and step out of bed wondering if today I'll be able to walk?

And having it reappear has also made me decide I might as well learn to deal with this now - and not bother to wait for a diagnosis of any kind. If I have a name for this or not - it still exists and obviously I will need to learn to deal with it. So - I plan to talk to my doctor about getting referred to Physical Therapy. Maybe they can help me walk better during the Funky Chicken episodes and maybe they can tell me if a cane will really help me. I've taken to using the cane around the house and I think I save myself a lot of fatigue and painful legs when I use it...but I'm not ready to use it in public yet. Funny - but I feel like I need someone 'official' to tell me its ok. Why am I waiting for permission?? I don't really know. But I am. Maybe, in some strange way - I wonder if it couldn't all just be in my head.

Well - I suppose - it probably is. In a way. lol

Welcome everyone! Read on.

Nik