caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Wednesday, November 24, 2004
My Mandatory Rest Period

On August 13th,2004 I woke up not feeling right. I actually thought I had Vertigo again. I went to work anyways but left around noon. I went to a drop in clinic on my way home to see if it was Vertigo and he said yes. Take these pills and it will go away.

The next day something told me this wasen't Vertigo. I've had it before and it went away fast after I took the medication. My vision was all whacked out. I couldn't focus on anything and I was seeing double images and feeling sick from all the motion. So, Saturday night I asked my husband to take me to the hospital. They fast tracked me at Emerg... I guess I had symptoms similar to a stroke. I seemed to have less vision in my left eye and crazy double vision in my right eye. They did a CATscan and thus started my mandatory rest period.

They scanned me to see if I had a brain tumour. That was a scary thing to hear from a doctor while your sitting in a gown in an emergency ward. Turns out I didn't have a brain tumour. They actually couldn't tell me what was wrong though which seemed more daunting than knowing I didn't have a brain tumour. But they said to go to my family doctor on Monday and let him explore what's wrong.

So we did that. Family doctor forwarded me to an Opthamologist. That jerk (clearly, he skipped the bed side manner class in schoool) told me I have Sixth Nerve palsy. Then forwarded me to a Neuro-Opthamologist. This doctor (jackass number two) confirmed that and also added partial Seventh Nerve Palsy.

Okay, so I have this paralysis in my eye muscle and the muscles in my face that control facial expressions. But none of these doctors can tell me why. Only that these are symtoms of something else. And no, he won't give me a list of what it could be. He wouldn't even entertain the conversation and told me not to go surfing on the web either. He ordered an MRI of my brain. In the lovely city of Vancouver... this is a 2 month wait list. I'm already into 3 weeks of this double vision crap and still don't know why and the only thing I can do is sit at home, don't drive my car and no working. I was literally crawling the walls!!

So, after some quick research I found 4 MRI clinics that I could go to and pay to have my MRI done with only a one day waiting period. Easy decision right? 750.00 dollars later and literally a one day wait and the MRI was done. Back to the specialist again and he says that I'm a possible to probably candidate for Multiple Sclerosis. He forwards me to the MS clinic which also has about a 4 week wait.

October 26th. I was confirmed to have MS. They were positive with me that I have Benign Remitting Relapsing MS, the best kind to get. I'm thinking no kind would be better, but thanks I guess after living for over 2 months without a diagnosis this is one I can swallow.

So thats been my journey to date. I'm still off work with the eye stuff going on. I don't know when I'm going to be "ready" to go back to work (everyone keeps asking) but you can bet it'll be as soon as I can! I miss having a place to be everyday other than a doctors office. Even if my job isn't my dream job, it'd still be nice to be capable enough to do it again.

Tuesday, November 16, 2004
November 2004 Archive
What is it doing to me?
2004-11-24 19:54:00

I've read a lot of other blogs where other MS'ers have listed what their MS is in their bodies. Its so incredibly different in each person. One person's MS could sound like a completely different disease compared to someone else.

- I currently have the weird vision stuff going on from Sixth Nerve palsy. My right eye muscle has paralysis which is getting better but essentially caused complete double vision. Now, three months in to it, I don't have double vision but it seems like my right eye can't keep up with what my left eye focuses on so I feel like I'm visually interpreting information too slow.

- I had partial Seventh Nerve Palsy for about 2 months at the same time the Sixth kicked in. The Seventh nerve is the muscle responsible for your facial expressions. So the right side of my face from my mouth up to my eye was drooping slightly. It was pretty hard to tell as it seemed mild. I also lost my tastebuds for that time frame too on the right side of my tongue. That sucked!

- I have balance problems when walking or just standing. They are kinda comical really. I feel like I'm about to fall over and have to catch myself. And I always do catch myself, but I think it sure must look funny. This is particularily bad when I go for a walk.

- I react in weird ways to heat. If I take a bath I feel overheated for hours afterwards. The heat also seems to activate my eyes to go all wonky. I also seem to get sick everytime I've travelled to warm places although this has been happening since about 2000 so I don't yet know if its an MS symptom as I don't really know when I got MS. I think 2001 but who knows.

- I've also had pins and needles in my legs and arms which at the time in 2001 was attributed to finding a degenerated disc in my Lumbar. The MS clinic is considering this episode my first MS attack.

So thats what MS is in my body right now. With my short list I suppose that is why mine is being called Benign. The expectation is that I will go into a full recovery of these symptoms and into remission for an unknown period time. Thank god for that.

My Treatment Plan
2004-11-25 19:25:00

My MS doesn't dictate that I should be on any western medications. However, the message was pretty clear from the supportive nurse at the MS clinic that I need to get my body in a healthy state. So my treatment plan from the MS clinic is this:

Tai Chi
Vitamins D3, a Multivitamin and B Complex
Omega 3 and 6 Fatty Acids (no fish oil products though! They carry higher levels of mercury that no one needs)

The two I add in with or without my doctors advise are Massage Therapy (with Muscle Balance Function) and Accupuncture.

Hopefully once this attack is gone and I'm more involved in all of the above, I'll be stronger and better prepared for the next attack whenever that may be. Off to accupuncture now. Happy sunny Thursday to you all.

One month
2004-11-26 18:21:00

So, Its been one month today since I received my diagnosis. I can say that I feel good about keeping myself healing. I'm glad I haven't gone back to work yet. I think that I've come a long way since this attack started and I feel like my body it still trying to heal itself albeit slow for my taste. I've talked to a few co-workers who all keep asking when I'm coming back! Its a little hard to keep saying I don't really know but it's true. I really don't know.

Next week I go back to the MS clinic with my big long list of questions for them. Every couple days I seem to have a new question about this or that. The one thing I will tell them is that I will decline participating in a clinical trial. I just don't feel like its in my best interests to do one. I want to heal from this attack and continue on with my life. If I do a clinical trial I will have medication in me (or placebo, I know) and I would have to contend with driving in to the clinic (hour or so each way) every week and have possible side effects. I guess my rationale is that I am not being prescribed meds now, I am healong on my own so I dont feel comfy being the guinea pig for them when I don't need to take any.

I have a request to blog about this...
2004-11-27 05:14:00

Benign RRMS... why not just RRMS? Well, here's my understanding that I will hopefully get more information on Tuesday from the MS clinic as I don't fully understand it either.

I had an attack in 2001 which was only numb legs and one numb arm. My doctor didn't think I needed to go to a neurologist as an xray of my spine showed a degenerated disc and he said nothing could be done. End of story. I found my own form of treatment; massage therapist who also practices Muscle Balance Function. I highly recommend it. A combo of yoga-ish and muscle strenthening exercises. So, it took about 6 months and I completely recovered. No more back pain and good strength back.

2004 I get hit after a giant amount of stress with this Sixth Nerve Palsy. Has anyone else had this? It sucks. So the MS clinic confirmed me a BRRMS patient because of what amounts to 4 years of health background with a start of attacks in 2001. So their projection for the future based on my current ability to recover on my own from this attack and recovered from the last attack should follow a mild or benign course. However even though they think this is the right diagnosis they will be able to further confirm this after 10 years of health history.

I pulled out the MS clinic's Patient Handbook and here is what it says in its description of the Benign Course:

"A significant number of patients have a relatively mild form of MS. They may have one or many attacks, usually mild, but they resolve sponaneously with no residual or minimal Physical impairment between attacks. Ambulation is usually mildly affected. Even though the neurological impairment may be mild, fatigue and lack of endurance may be a major disabling feature. The course is said to be benign if this pattern exists after ten years. In our clinic experience, we have observed a group of patients with documented disease for 25 to 30 years and 35% of this group have followed a benign course. Patients in the group have a normal life expectancy."

So, that being said... I'd like to be a part of that 35% thank you very much. The question that will forever be in my mind: If I had known in 2001 that I had MS would I have choosen to go through the stressful things I did and keep on the unhealthy path I was? Would I have even had this current attack if I had known? Or would I have gone 6 years before another attack?

I know, I know... there's no changing the past... Only change for the future.

Addiction or Time Waster?
2004-11-28 07:12:00

Okay, you tell me. Is Sims 2 really as addictive to you as it is to me!? LOL! I tell myself that I'm just using it to waste away my days doing something.... hmmm... I am now playing my 3rd generation sim family. 2 tombstones in the back yard and I have 3 more kids and a new giant house.

Soon, soon. :)

Halt the disease in its tracks?
2004-11-28 17:51:00

This is one to watch. Made from Cow brain. Eww. If this vaccine finds success it could halt the progression of the disease? I'd be game for that.

MRI Chatter
2004-11-29 22:42:00

I wanted to write today about my MRI experiences as I think most who are diagnosed with MS go through them. Oh how lovely they are :)

First Scan: My Neuro Opth doctor ordered my first scan of just my brain. This was prior to my MS diagnosis and was to see if MS was a factor in my Sixth Nerve stuff. He didn't tell me that this was why he was ordering the scan. St. Pauls hospital phoned me and told me it was in 8 weeks! I was not okay with this. I was off work, no diagnosis as to what the heck was wrong with me and I was being told I would have to wait 8 weeks to have the scan and 2 weeks to get the results. No thanks. So I researched out 4 facilities in BC that are private. Big struggle here though... we don't "pay" for medical services in Canada, its our right to have health care equally and I felt strongly about staying with the public system. However, when I found out that I could have the scan done in 2 days and have the results within the week, I had to do it. So, I paid 750.00 and was on my way to Fraser Valley MRI. I called them on Friday morning and faxed them the requisition form. Friday early afternoon they called and said come in on Tuesday morning! Fast!

They were really great there. Super nice people, nice facility. They took me into a little room and gave me the key to it. I changed into the horrible pants and top outfit, lock my room up and then they take me to the MRI. First the tech gives me a full tour of the machine and what will happen. She gives me the ear plugs and has me lie down. She velcro's my head to the table and puts these comfy weight bags on either side of my arms and down the length of my body. They kinda hold you in place nice and tight so you can't move. She said it's more to remind you not to move but it was quite cozy comfy! She puts a blanket on me and puts these warm slippers on too then slides me inside the tube. Right above me is a little mirror contraption that allows me to look down and outside the tube. I can see the tech sitting at my feet perfectly. Kinda neat. Then, she walks me through the whole process and talks to me in the tube a lot to let me know what's going on. And before I know it after all the loud knocking and banging and buzzing its done. I slide out, hop off the table and go get dressed. Completely painless. Not so bad.

Scan Two: This was ordered by my neurologist that I went to see for a second opinion. He figured the MS clinic might have faster access to get me the MRI, but if not then this request would at least get the ball rolling. He ordered a scan of two sections of my spine; thorcsic and cervical. This time I decided to just wait for the public system to pay for it as I was about to the see the MS clinic and the critical brain scan was already done. The expection for this scan was that they would find lesions and confirm that I was a multiple sclerosis patient and not just a one sclerosis patient (brain scan only). So, my neurologists office phoned me to tell me the scan was Dec. 29th, but that if I phoend them and told them I could come at anytime and that I was off work they would get me in earlier!!! HUH!? Wish I would have known this prior to paying for my last one! So, I did and ended up getting that scan done in 4 days. Sigh. Lesson learned about medical apointments... always put yourself on the waiting lists and push for them to take you sooner if at all possible!!

St. Pauls hospital scan sucked. The foam under my head on the table was too thin so the back of my head started to hurt from having to lie on it so still! There wasen't a mirror thingy to look out and the tech didn't talk to me the ENTIRE time I was in the tube!! So, I never knew how far along the scan was, when it was going to move, no warm blanket or slippers or anything! It sucked. And it was a longer scan, about 40 mins in the tube. Blech. That time I started to feel just slightly uneasy in the tube. The first scan I didn't at all. The more you pay, the better the product I suppose?

And the findings? Brain scan showed 2 lesions. Spine scan showed 3 lesions and one disc bulging. No wonder my neck hurts!

Quackwatch finding
2004-11-30 00:12:00

This is awful. A doctor is being sued for using hydrogen peroxide IV to treat a women's MS. Hydrogen Peroxide IV? How could he possibly think this was going to be okay... Jeesh.
If you dont' follow Quackwatch, I'd highly recommend it! And not just for MS, it covers all the medical quackery thats out there.