9 Days After Diagnosis/ Expectations

Current Meds:
1. Prednisone (12 tablets {60mg} in morning for 2 weeks then 4 tablets {20mg})
2. Citalopram 10mg once daily
3. Lorazepam 1mg at bedtime

Current Symptoms
Physical: fatigue - mild
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: rapid pulse, aggitated, headache, slight fever

Well it has been just over a week now since my life-changing diagnosis. I wanted to talk about a few things that may be of interest to other newly diagnosed MS patients. Because everyone deals with things in different ways, I figure a report on how I'm actually doing, plus what is going on medically and how I handle that stuff is a day or two overdue.

First I'll start with the medical stuff. A week after diagnosis, I have been reading avidly on the topic of my disease and educating myself about the treatment options. I've been studying symptoms, treatments, theories about MS, etc., just trying to become an expert on the topic. I still have a long way to go but what I have learned in such a short period of time makes Dr. Pettigrew's class look like an intro course (sorry Todd). All the information I have been digesting has been graciously provided by the MS clinic at the Regional Hospital in Sydney. They've given me booklets, zines, videos, and disc's. Just tons of information, some of which I have published on this blog.

At my clinic meeting yesterday I introduced my support team (my mom and my girlfriend) to my MS clinic nurse. It is a good idea to get friendly with the people who you are planning to have help you. I have selected people close to me to go through the training process of injection in case I need one of them to administer my injection should the need arise. I was also sent for bloodwork, which I just returned from, to check liver functioning, as the injections have had some small incidence of liver problems (for those who may be interested they were checking CBC, Diff., TSH, and liver Function). The incidence of liver problems is so small in fact that I'm not really that concerned about my liver malfunctioning. The treatments seem safe enough to me. I'm actually looking forward to starting them, which won't be until mid August.

Mentally, my entire focus in the last week has shifted. Everything I do now has some purpose, even if I'm just closing my eyes for 5 minutes. The first 72 hours after diagnosis you begin to see how many lives you have an effect on. All week I've been checking my e-mail 4 times a day, and usually finding new e-mails from people I havn't heard from in some time, and answering the phone to hear familiar voices giving me some encouragement and someone to talk to for a few hours at a time. It is so good to see the outpouring of support. I'm trying to respond to everyone's e-mail but my eyes are so sore its hard to type back to everyone.

Another thing I've been finding is that there are three main reactions from people who you tell about your MS: 1 "Oh my God! Are you ok? .... What is it?" 2. "Oh my God. I'm so sorry to hear that. If there is anything I can do... just ask me, ok?" 3. "I'm shocked. You know, so-and-so-related-to-me has MS, if you need someone to talk to..."

These are really bad paraphrases but that's mostly what I've been getting from very concerned and helpful people. A lot of people will ask how I'm handling it. I find that difficult to respond to becuase I feel so driven that I think they wouldn't believe me if I actually told them that if it wasn't for the stupid medication side effects nothing would be different physically (save for the blindness). The blindness was slightly better this morning. Its been almost 2 weeks of darkness for my left eye and this morning I was able to see big shapes through that eye, like my bed, and my window and my hand when it was close to my face. Still pretty far away from details peeking through the haze however. I was able to drive the car this morning as well, from sobey's to home; hey you have to eat! I'm not walking with 200$ worth of groceries in my arms.

I guess the bottom line is this: I feel good about myself for the first time in a long time. I have seen where my strengths are: in my friends, my family and deep, deep inside of me is a huge soul that won't ever quit. I have moments of sadness but they are so short they hardly qualify as moments. Being able to function through this has showen me how far you can push yourself if you need to. The human body is tougher than it appears and the human spirit is like hardened steel, supporting the body, when it is alive and well. I meditate everyday and I do several relaxation and breathing exercises to control my body rhythms--as a result I haven't had a panic attack in 3 weeks. I feel balanced and alive. I'm seeing lots of people, making lots of new friends, and reaffirming old friendships. Life is great! Enjoy it!

MS Clinic and Treatment Options

Current Meds:
1. Prednisone (12 tablets {60mg} in morning for 2 weeks then 4 tablets {20mg})
2. Citalopram 10mg once daily
3. Lorazepam 1mg at bedtime

Current Symptoms
Physical: fatigue - mild to heavy in mornings and late evening
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: Nausia, rapid pulse, aggitated, blurry vision, headache, fever


My eye sight was improved yesterday when I picked up some prescription glasses. The one eye that I've been seeing out of was always under stress from constant strain of trying to cover distance without the other eye. When I put my glasses on the relief was immediate. I was actually able to read the licence plates on the car in front of us on the way home from the mall. I was filled with joy, reading the numbers and letters out loud as if I had just learned to read for the first time. That being said, not much improvement in the blind eye.

Today I have my first appointment at the MS clinic with Sharon Walker. I met her last week. She's fabulous. The health care system is alive and well in Canada with people like that manning the stations. She is so helpful. She even let me have her seat when I was standing in her office. All it takes is one person to understand to brighten your day.

I have been reading about my treatment options for MS in anticipation of this meeting. I want to be as informed as I can be about my choices to ensure I make the right one. I suppose I can talk about that for a few minutes here.

In Canada, there are 4 drugs being used to treat MS at various stages of the disease: Avonex, Betaseron, Copaxone, and Rebif. They are all a bit scarry at first because they all involve self-injection. For chem majors out there, Copaxone is a glatiramer acetate the rest are interferon beta drugs.

Avonex is one IM (Intramuscular) injection per week, Betaseron is three to four SC (subcutaneous) injections per week, Copaxone is one SC injection everyday, Rebif is three SC injections a week. From what I've read so far, and I'm not fully versed in the use of these drugs yet, but the only drugs I'm interested in taking right now are Rebif or Avonex. Hopefully, my doctor will be able to help me decide what is best for me. Well, duh! That's his job.

I've really been minding the heat today and yesterday. It makes me so tired and I feel sick to my stomach today. I came close to loosing breakfast this morning. I hate being nauseous, worst feeling ever. Not much I can do except trying to rest before my appointment. Off to rest then.

What is MS?

Current Meds:
1. Prednisone (12 tablets {60mg} in morning for 2 weeks then 4 tablets {20mg})
2. Citalopram 10mg once daily
3. Lorazepam 1mg at bedtime

Current Symptoms
Physical: fatigue - mild to heavy in mornings and late evening,
Sensory: Optic neuritis in left eye (causing pain)
Psychological (memory/mood): Slight difficulty getting thoughts in order
Medication side effect?: anxiety, rapid pulse, aggitated, blurry vision

I've been talking a lot about my diagnosis and my symptoms but I'd like to go into some detial here about what exactly the disease is. This is important because for me, at least, the disease didn't really sink in until I began my research and realized the seriousness of what was happening in my brain and spinal cord. Now, there are lots of places on the internet to go to for resource but as I've learned in my academic study we must be wary of internet sources. So my aim here is to bring most of what I know together and offer some direction through the mountain of information available on the silver thread.

(For reference, a lot of my material and information is coming from information provided to me by doctors and the MS clinic.)

What is MS?

Multiple sclerosis (MS) is a chronic, often progressive disorder that involves inflammation and destruction of the myelin [a layer of insulation that helps electrical messages travel from the CNS to other parts of the body] on nerve fibers (axons) in the brain and spinal cord. (See diagram: http://www.unsermobile-augsburg.de/ms_was/) The demyelination and scarring (sclerosis - hense, multiple sclerosis) of nerve fibers in the brain interrupts with the flow or delivery of the messages the brain sends to the body. The messages, depending on the type of damage, can be mixed up, slowed down, or blocked entirely. The nerves themselves can also become damaged. MS sometimes follows a pattern of relapses followed by periods of remission. The course of the disease is unpredictable, and damage to myelin may occur with each attack. Although there is no cure, treatments may help to slow the progress of the disease by reducing the frequency and severity of the attacks and even delay increasing disability.

MS is a complex disease that appears in many forms. There are 4 major types:

1. Relapsing-remitting (RRMS) is the most common. RRMS patients experience acute symptoms with periods of recovery in between. The return of new or worsening syptoms is called a relapse.

2. Primary progressive (PPMS) causes a gradual worsening of symptoms over time. Fewer than 15% of MS patients will develop PPMS, although this is the most common form for patients diagnosed after 40.

3. Secondary progressive (SPMS) begins as RRMS and then progresses with time. The patient may experience relapses with worsening symptoms and occasional recovery periods.

4. First Demyelination Event (FDE) refers to an early MS symptom such as optic neuritis that may show on an abnormal MRI typical to MS. Patients in this category have a 90% chance of developing MS.

Some fast facts about MS:
* MS is not contagious.
* It is not a mental illness.
* It is not hereditary (in the usual sense).
* It is not preventable.
* Each case is unique and unpredictable.
* Canadians have one of the highest rates of MS in the world.
* Each day in Cananda 3 more people learn that they have MS.

What causes MS?

The exact cause of MS is not known. The best theory out now is that MS is probably an autoimmune disease. That means that your body's own immune system is attacking itself--in the case of MS, the body becomes allergic to itself for unknown reasons and the immune system attacks the myelin. Although MS is not hereditary genetics do play a role. For women with MS, the likelihood of passing the condition on to her children is only 2-4%. The children of men with MS are slightly less likely to develop the disease. Certain genetic populations, such as northern European backgrounds, are more susceptible to MS. The disease also occurs more frequently in countries that are farther away from the equator. Some believe a viral infection, such as chickenpox or measles, may trigger MS in susceptible people; a childhood infection may not set off MS until years later. It is believed that the infectious agent contains a protein that mimics myelin. This foreign protein prompts an immune response that is aimed at eliminating the infectious agent but ultimately attacks the body's own nerve cells and tissues. It is very likely that a combined set of probabilities, such as the ones discussed above, may be required in a person to develop the disease--that is: viral infection, unknown autoimmunity, and genetic disposition.

A few more MS facts:
* MS affects about 50,000 people in Canada.
* MS affects about 350,000 people in the US.
* MS affects about 300 people in Cape Breton, Nova Scotia.
* It is typically a disease afflicting young adults in their career and family building years, between 20 and 40 years of age.
* All races are affected but it is more common among Caucasians, especially those of Northern European descent.

I hope this has been useful. For more information visit the Canadian MS Society web page in the links section.

Visit with Dr. Dorar / Diagnosis talk

Current Meds:
1. Prednisone (12 tablets {60mg} in morning for 2 weeks then 4 tablets {20mg})
2. Citalopram 10mg once daily
3. Lorazepam 1mg at bedtime

Current Symptoms
Physical: fatigue - mild in mornings and late evening
Sensory: Optic neuritis in left eye/ blurry vision in right
Psychological (memory/mood): none
Medication side effect?: anxiety, rapid pulse, aggitated, blurry vision

I've never had a family doctor call me to make an appointment at MY convenience before. I thought, must be something interesting. It turns out he was just wanted to let me know that he knows everything and is updated to my situation. He said to call him anytime about any concerns and let me know when he'd be on vacation.

I raised a few concerns with him there, for example steroid use and heart disease (which runs in my family). I was also worried about how much excercise is too much while I'm on the Prednisone. He suggested that because my weight is ideal that walking and keeping tabs on my diet was all that was really necessary and advised against any strenuous activity. That upsets me, I love running and pooring sweat, I love Judo and pounding the mat... blood, sweat and tears. He said that after we curb this acute attack things can return to normal perhaps. So now I'm doing my "favorite" activity: waiting. But it is good to know that Dorar is there for me, he made a nice gesture today.

My last post may be misleading in that my diagnosis seemed quick and easy. I assure you it was not. I'd like to provide a little information on how it is diagnosed.

There is no test for MS. Diagnosing MS has been compared to fitting together a jigsaw puzzle. To diagnos a person with MS a physician has to be sure that two different areas of the white matter in the central nervous system have sustained damage that is not explained by other illnesses. Furthermore, the attacks must have occured at different times in the progression of the illness. A diagnosis is based on several things: a detalied medical history, including past and present symptoms; a neurological examination, a painless procedure where your neuologist checks your coordination, eye movements, reflexes and balance, etc.; an MRI (magnetic resonance imaging) scan; Cerebrospinal Fluid (CSF) sample obtained from a lumbar puncture (spinal tap); and evoked potentials using small electric shocks and electrodes measure your reaction times to images and sensations.

All that in consideration, I've been experiencing symptoms for about 5 years now; only with my new diagnosis have my symptoms made any sense to me.

The first thing I can think of that happened to me, MS related, was just before I entered university. I was upstairs talking on the phone and my leg felt like it was going asleep. I tried to get up and stretch it out but it got worse. Then the feeling spread to my arm and then my face. I began to feel very wierd and I started to panic. The tingling turned to numbness and I struggled to get down the stairs. I tried to speak but the left side of my face so useless to me and I was slurring all my words. I somehow made it down the stairs, hung up the phone and collapsed on the kicthen floor yelling to my brother to call 911. When he realized I was serious he did just that.

The parametics had showen up after I've had two such attacks... I was feeling much better and was tempted to blame it on stress and let them go. One of them was quite concerned for me and told me I should go to the hospital. I resisted... until I had another attack in front of him and he carted me up to the ambulance and I was off for my 3 night stay at the grand "she-la" of hospitals. Days later and many, many tests later, 'nothing' was the word of the day. To add insult to injury, some of the staff at the hospital thought I was faking it and treated me like I was wasting tax dollars. My pain was real, my numbness was real. I thought I was having seizures. I really didn't know what to make of any of it. I cried myself to sleep everynight in the hospital, unable to leave the bed on my own to go to the bathroom.

Almost as suddenly as the symptoms appeared they seemed to vanish. I had some residual effects from the numbness as it seemed my nerves in my left side were what I would call "dull." I was unable to play my guitar for 3 months though I persisted and fought through the numbness. For a year or two, when ever stress mounted, I would feel some slight tingling in my left side of my face, my left hand and left leg. But self-talk and positive thinking seemed to control that. I was well on my way to believing that what I was experiancing was simple anxeity and stress related happenings. Oh, glorious hindsight!

Ever since my diagnosis I have been looking back at every tingle, shock, weakness, pain, unusual feeling in a different light--the light of reason. It is truely great when all the wheels spin and the gears don't click anymore when I shift my thinking. No more second guessing myself, no more beating myself up over "nothing," no more worries: I can act without impunity or doubt. Moving forward!

Diagnosis

Before I begin my stories, I'd like to lay out a format for quick information. It may be modified a few times so bare with it.

Current Meds:
1. Prednisone (12 tablets {60mg} in morning for 2 weeks then 4 tablets {20mg})
2. Citalopram 10mg once daily
3. Lorazepam 1mg at bedtime

Current Symptoms
Physical: fatigue - mild in mornings and late evening
Sensory: Optic neuritis in left eye/ blurry vision in right
Psychological (memory/mood): none
Medication side effect?: anxiety, rapid pulse, aggitated, blurry vision

Well, the begining... that really depends on what you mean by "begining." I'll start with my diagnosis. That seems best.

Date of Diagnosis: June 21, 2005.

I went to the hospital after a number of visits, the most recent before diagnosis was 2 days prior, with what an ER doctor told me was an eye infection. He suggested I get some over-the-counter polysporin drops to treat it and if it didn't clear up to come back.

On the 21st, I was on my way to Judo when my girlfriend talked me into going to the reginal hospital because my eye had gotten worse and I was loosing a lot of vision. I had several "blind spots" in my field of vision (I'm currently blind in my left eye) and I was losing a lot of central vision. It appeared to me to be like what it looks like when you stare into a light for too long on the highway, all white and fuzzy, but it didn't go away when you closed your eyes and shook your head a bit.

I gave the brilliant ER doc my story, Dr. Mark Sampson was his name--best ER doc on the island, and I told him about the MRI scan I had done a week beforehand thinking nothing of it. I was just venting to him about all the medical problems I had been having. He did a quick check of my visual field, made some interesting noises when I couldn't see a few things then told me he was going to access my medical records at the hospital to check for the MRI results.

5 min later a grave but serious Dr. Sampson floated back into exam room 7. He quietly shut the door and sat down. He said to me, "I was able to view the results of your MRI scan and its exactly what I expected to see..." the silence between those words and his next echoed an eternity in my head. Years of hearing the same lines from countless doctors had prepared me for his next words, presumably "it's clear" or "nothing." But after the slight pause, to me the deafening silence of a thousand years alone, he said with trace elements of sadness, "you have MS."

A month ago I had considered the possibility, albeit only slightly, laughing it off as ridicules in the car with my mom and dad outside Tim Horton's. I mean, people with MS are in wheelchairs and stuff right? I didn't know that much about the disease then so it was easy to dismiss.

What a whirlwind. The gravity of the situation took more than a few moments to sink in. Looking back on it, I was probably in shock for the next 2-3 days. I still have moments where I forget momentarily that I have MS. It was even difficult to say, "I... have... MS."

I asked Dr. Sampson, "Is it bad?" He said very resolutely, "It could be. It could be. That's why you need to make major dicisions now. I want to start you on treatmeant as soon as possible. In the next 5 min, but I need to get your permission because its a heavy dose of IV steriods to stop the inflamation in your brain. You have 2, what appear to me, newly active legions on your brain that we need to try to control before its too late. I don't want you to say in 5 days 'I should have had the treatments.'"

I asked him for a few minutes alone to consider. I brought my girlfriend in from the waiting room and told her that Dr. Sampson was 95% sure I had MS. She laughed and told me not to joke like that. I laughed at how funny the situation was... all my complaining for the last months about brain tumors and MS and all kinds of stuff... and here I am ... actually having this conversation I didn't want to have with her. I guess the look in my eyes persuaded her after about 15 seconds of shaking uncontrolably. I was so scared.

Dr. Sampson came back in and talked to both of us about MS and the treatment for about 20 minutes. I asked him if it was fatal. He told me it was very treatable if I act now, with two feet, on top if it always whenever a symptom presented itself. When I consented to the treatment, he left and I tried to relax and awaited the IV injection, Jessi holding me close, rocking me and rubbing my hair, I thought... how am I going to tell my family about this when I get home?

Watching the IV drip into my hand, life seemed to have changed. It seemed somehow more real for me now. I knew there was something wrong, a doctor finally listened. I was getting the help I needed at last. The nightmare of the last 5 years seemed dreamlike and surreal, leaving me when the biting sense of reality, I HAVE MS! But somehow it felt more right than wrong. I was scared but relieved. I felt a surge of courage wash over me like a wave; "let it destroy you or carry you on," I thought. This is MY cross, I will have to carry this, this is MY passion, this is MY disease.

I asked Jes to stay with me again that night to make sure I didn't react to the drugs in my sleep. She obliged. Then I was off, IV still in my arm, to tell my family of my distressing news.

Welcome

Welcome to my MS journal. Here I will be keeping tabs on my illness through symptom reports and emotional ramblings that are intended to keep track of my disease and allow my friends easy access to my feelings and just general health. You can also check my regular blog.
Located at:
http://windamongthereeds.blogspot.com/


I have a lot of information to upload onto this blog in the next little while so bare with some of the boring medical terms and stuff. Hope your visit is informative.

Peace
-Doug