Twitches are different now...

Needles to say... it is getting in the way of things.

Here is part of something I wrote with the intention of posting as a note on facebook, but have not, however may still, anyway:

In August an MRI revealed I have a Chiari Malformation (type 1), which is a herniation of the bottom part of the cerebellum (in back of the brain) into the spinal canal. At the time I had no idea what this meant, but have since been searching for answers. There is surgery available for Chiari Malformations, involving decompression of the neck and spinal cord, and removal of some bone at the base of the skull, and possibly the top vertebrae, and also possibly “shrinking” the herniation.

At first I was not eager to sign up for this, and the doctors did not seem to think all of my symptoms could be caused by the herniation. My symptoms have changed however since I last saw a neurosurgeon, and I am learning that neurosurgeons in Canada tend to have less knowledge of the mechanisms of the disorder and the range symptoms.

I have spoken to many other patients with symptoms like mine, and other symptoms that were unusual, who benefitted from surgery. The brain is intensely complex, and it is still not known what systems CM can affect. I am unsure at this point how to pursue treatment, but I plan to seek another neurosurgeon consult, and future MRIs. Unfortunately the advanced centers in the U.S. designed to treat this disorder are not covered by OHIP, so I am likely to pursue surgery in Ontario, but as I understand it will be considered “elective”, if I do not develop any secondary problems, such as a spinal cord cyst known as a syrinx, which is somewhat common with CM.

This is some of what my day was like today, and what it is like most days lately:

This morning when I woke up it felt as if I had been sleeping on top of rocks. My neck was so extremely tense, and the headache always hits really hard first thing. It is almost impossible to think of getting out of bed, but I know my body will just feel worse if I continue sleeping. As I sit upright it feels as if my head is full of sand that shifts from side to side as my brain adjusts to being upright. My face hurts. It always does, but it’s like I have to re-adjust to certain things in the morning, like sometimes in my dreams I’m not in pain. I sometimes really want to stay in my dreams. I never feel rested. When I stand on my feet they feel full of pins and needles. My muscles ache, so I move slowly. By the time I start to walk to the bathroom I start to notice the sense of vertigo that comes and goes throughout the day.

Every time I move my head it aches. My ears always feel full, and are often achy as well. My neck also hurts a lot, especially if I’m not careful how I move it. My neck cracks about 20-30 times throughout the day, or rather it stiffens up, I feel the need to stretch it, and then it cracks and I get a temporary relief of some of the pressure and tension.

When I take the dog for a walk I usually try to avoid hills, and I can’t walk very fast or for very long. Sometimes I will unintentionally over-exert myself while walking, and I will begin to feel dizzy, and a lot of pain in my head, neck, eyes, ears and face, as well as my legs and arms which will also start to feel weak, yet also tense up. I then begin to have trouble moving my legs correctly. More frequently lately, I have started twitching involuntarily when I exert myself. I usually find somewhere to sit down for awhile, or else I tough it out and make it home, although by this time I am surely walking “funny”. Sometimes I think people are noticing, but usually people are too absorbed in whatever they’re doing to notice much.

If I try to drive, I always get a more intensified headache. My neck also becomes more tight. I find it hard to turn my head to make the necessary movements and scans for driving. My neck cracks often while driving, and I have to rest my head on the head rest or my hand. Long trips are especially difficult and I have to make a lot of stops. I also get a lot of pain in my legs, hips, hands and shoulders, which can make driving difficult.

I have to got to bed at a decent time every night. If I don’t get 10-12 hrs. rest in bed, I am in more pain and more fatigued, and am more likely to start twitching, have more nausea than usual, and/or have more dizziness and hand tremors.

There are a lot of things I am not mentioning here, however I feel that I have said enough to make a point. I don’t enjoy talking about this. I find it necessary however, since I encounter more and more people who expect me to have a normal amount of energy for a 28 year-old, even after I tell them I have a neurological disorder.

I have had this diagnosis for a short time, and am doing my best to research as much as I can about it so I can make informed decisions about my future, however I am having a difficult enough time getting through the day-to-day. As I am writing this now, I am having to fight with my eyes to focus on the text; they want to blur. I can hear my heart beating in my head and there is recurrent ringing, hissing and “wooshing” sounds in my ears. It is all rather distracting and tiring. Of particular concern lately has been the twitching which makes it difficult to relax or focus on anything, but is not typically reported in CM cases. Anyhow, I will continue my self-directed research, and try to maintain some degree of “normalcy” and sanity in my life. I am still working part time, and finishing a course. But I have been cutting back shifts and missing classes, and am pretty overwhelmed to say the least. What also makes it difficult, is that to others I look “fine”, and not like someone who is “sick”. I am grateful that the problem might be treatable, and that I am still able to take care of myself for the most part, but there are those scary times when I’m not sure if I really can, or for how long. I’ve been trying too look at life as one day at a time, but It’s been day after day of struggling to get up the same hill, and it just keeps getting higher and steeper. (Sounds like a bad pop country song, but you get what I mean.)

I have found a lot of hope in connecting with other people with CM over the web. There are also a lot of really awesome websites. I don’t want to overwhelm, so this is the one I will admit I have been finding the most resourceful lately:

http://www.conquerchiari.org/index.htm

The ‘Education’ and ‘Awareness’ sections are particularly good to start with.

I would if it weren't for my legs

Earlier today I was on facebook (which can be a bit of a bummer sometimes, since it means glimpsing into other people's lives, and all the things they are able to do and enjoy, while I just sit most of the time). I came across a discussion on my news feed involving a bunch of friends of mine, people I used to hang out with regularly, and how they are planning to go out dancing tonight. At first I thought of how nice it would be to see them, and didn't I wish I could just swing by. But my body can no longer handle being squished in crowds. I would surely regret any attempt made at dancing for at least 2 or 3 days following, and would expect more pain, stiffness and fatigue than usual. Not to mention the headache would worsen. It is constant and getting worse all the time, depending on the weather, or rather the pressure in the atmosphere. I need to get my rest more than anything, or else these things become more and more intolerable.

This morning I cried while trying to hang a picture frame that had fallen off the wall, cause of the pain in my left shoulder when I lifted it, and the tingling in my fingers, and the curling, and tensing up; the strange way I am beginning to hold my arm so I don't further injure it, almost cradling it, "t-rex arm", I've been calling it.

Today a stranger told me I am lucky to be young. People are always telling me I look great. I wish looks corresponded with feelings. Dani is always saying it would be great if all the parts of me that are sore turned purple, so the doctors would actually be concerned.

Less horrible than the pain, but also scary to think about are the parts of me I just can't feel as well as I used to, the way my feet fall asleep while I am standing on them, how parts of my skin are always slightly numb. Particularly my legs, as it feels like I am always wearing knee high stockings. I find myself confused by this, wondering how the feeling in my legs can just start to disappear like this. I wonder if it's worth it to hope that it could ever return.

American news clip about Chiari 1

Chiari 1 Malformation

They found something interesting. They say I have a Chiari 1 Malformation. This means that part of my cerebellum is herniating into my spinal canal. They say this may not explain all of my symptoms. There is a surgery for it, but I do not qualify for it at this time. Meaning, my symptoms are atypical of Chiari and they don't know if the surgery would help. Furthermore, they like to wait till you lose a lot of your independence and functioning before they cut open your head. I can still walk for up to 3 blocks at once, and I'm still managing to hold down a part time job, so I guess I'm doing ok, comparatively.

I feel as though I have a long road ahead of me still.

I do have a lot of headaches, well one all the time that gets worse at times. Tylenol doesn't help. Coffee helps. They say caffeine opens your blood vessels or something.

Anyway, it's all very thought provoking, but for now I'm going to take a break from doctor's appointments. I wish I felt like I could think properly. I hate thinking about this stuff, but it's hard to get it out of my head when I'm constantly reminded by the nagging symptoms. Of what... I'm not exactly sure. I worry about the times when things go numb, or all pins and needles, or when my hand gets to trembly and cramped up after I play guitar for a few minutes.

I suppose I have to think of what I still cando. I'm not wasting away yet. Things can always level out at some point and stop getting worse. Or, get better even. That would be nice.

Speaking of nice. I made a mini-vacation out of my last out of town doctor visit. That's always a good idea.

things I can no longer do with ease:

-walk down or up hill
-walk for more than a block or so
-stand for more than a few minutes
-play guitar
-draw
-type
-open jars
-grasp things without dropping them
-squat
-bend to pick things up

...

I could go on but this is making me depressed. I guess I am just trying to re-assure myself that I am not crazy and there is actually something wrong with me, considering I am under 30, in constant pain, which is helped somewhat by prescription, although certainly not on bad days. I'm getting weaker all the time, and need another prescription to control intense muscle twitches that make it impossible to sleep without pills.

I got a call from the Ottawa Rehab Clinic today. They previously said they would see me based on my symptoms, without a diagnosis, as long as my doctor wrote a referral. I am getting less and less confident in my doctor. It sounds like all she wrote down for them was that I have weakness in my lower extremities. They couldn't do anything with that. Well duh. I wonder why she didn't include any of my other symptoms, or any of the possible diagnoses we are looking at.

She previously referred me to a quack neurologist who was convinced upon looking at me that I did not have a neurological disorder, ran a nerve conduction test, but would not run an EMG on me, because according to him EMGs are only for detecting nerve and/or muscle loss in "older" people with no symptoms, and because of the severity of my symptoms, I must have something else, not Charcot Marie Tooth, maybe arthritis or Fibromyalgia, or maybe I just need "more exercise". ...!!! Bullshit!!!

CMT type 2 runs in my family and it can be detected through EMG, but doesn't show on nerve conduction tests. I found this information within many peer-reviewed medical journals, and it is also even on wikipedia. If I have CMT it would be type 2 since it's in my family, not 1.... ARG.

Next week I am going to paid physio, where I am hoping they will not give me exercises that will make things worse, instead of an OHIP covered clinic which commonly treats people with problems like mine. I have an appointment with a CMT specialist in 6 months. They say they will do an EMG. It is taking so long because it is now considered a "second opinion". Balls.

tics.m4v

time marches on

Hi.

So I don't know if anyone is reading this, but it doesn't really matter. I like to have a space just for this. I am hoping to make connections with other people who can relate to these weird and frustrating health issues. Maybe there are people I already know who never talk about their pain. I'm sure there are several. What's with that? Why is it so taboo to talk about pain?

I have developed a 'tic'. I'm not sure what it is actually. Feels like a really intense muscle spasm involving my whole torso and left arm, and sometimes left leg. I have a prescription for it, which is helping. However, it still comes on throughout the day, usually when I'm trying to concentrate on schoolwork, or a little stressed out, or sleepy.

Anyway, next I will post a video of when it was pretty bad, before I started taking medication, which is Apo-Quetiapine, or Seroqueal. This was last Friday:

Arg. I have to go try to finnish an essay that was due several months ago. I need to get it done today, or I might loose my credit.

Boo, I want to keep writing.