Wednesday, June 27, 2007

Coming to terms....

You'd be surprised how long it takes to come to terms with a diagnosis like multiple sclerosis. I was diagnosed in mid-July, but I decided to only share with a few of my closest friends and the co-workers who had been with me through the disagnosis.
So, then we got invited to this Halloween party. We went with a bunch of frineds, including some who were not privy to my diagnosis. Since I had long before been the one to volunteer to be the designated driver at these types of events, no one was terribly surprised that I wasn't drinking. I had mentioned off-handedly at some other parties that I wasn't sure how alcohol would mix with my new medications, but some people hadn't paid attention.
I feel really badly now that I treated him so meanly when my friend Bobert tried to tease me about tripping up the stairs, but at that moment, I snapped.
I was wearing a long, velvety skirt, a concession to the fact that the party was both indoors and outdoors and trying to navigate stairs that didn't have a hand rail. And, I had a glass of soda in my hand.
When I went to raise my right foot, I didn't lift it high enough, got it caught up in my skirt and tripped up the stair, spilling my drink. Bobert tried to make a joke of it and said something like, "I thought you were driving."
Poor guy. I nearly bit his head off.
"I have MS you idiot!"
I think that was the first time after my diagnosis that I said it aloud...I still clearly hadn't come to terms with it.

Tuesday, June 26, 2007

Waiting for the doctor....

The day I had my MRI done, my opthalmologist had a full schedule, but he skipped lunch to run over to the hospital and look at my MRI films himself. Helps when you work for the doctor.
But after lunch, I knew something was up and he was too busy with scheduled patients to talk to his employee patient.
Now, standard practice of our local hospital is to fas copies of test results to our office and then we would match them with the patient's file and put them in place for the doctor to see. Usually, I did this just because other people forgot to do it on days when we were busy and it needed to be done every day. So, it was about 2 p.m. when I decided to check the fax machine.
In all honesty, I suspected my MRI results would be there and I was waiting rather anxiously for them. The rediologist who reads the MRIs does not officially diagnosis you with MS. Officially, even with lesions present, it isn't a confirmed diagnosis until you get the results from a lumbar puncture, the new modern terminology for a spinal tap. But what radiologists do say is that the MRI showed several suspicious lesions, four in all, consistent with white matter scarring...hell, I don't remember the exact mumbo jumbo but the short version is: consistent with multiple sclerosis.
I think my hand was shaking when I read it. I know I was crying a few minutes later when I asked my supervisor if I could take a little break. She was confused until she saw the test results in my hand. Then, she let me leave the building.
I went to the picnic tablebehind the building and just sat there to cry. I'm not sure how long I had been out there when I heard my doctor yelling. "How could you just let her read it herself? I would have told her..."
Then the door opened and he was there, sitting with me at the table, telling me that this was not the end of life as I knew it. Ha! What the hell did he know? It's not like he was the one being sentenced to a slow, crippling disease. If I was lucky it would be slow, right?
It's funny how logic seeps in later, even if you can't hear it, can't bear to understand it when you first are told something.
"We see patients in here every day that have MS and you would never know it," he told me. "I know college professors and doctors who have MS and it is not a death sentence."
I wasn't worried about the death sentence to be honest. I was more scared, still am, if the truth be told, of a crippling sentence. But he assured me that too was only one of the things that could happen. It did not have to be.
He spent probably 20 minutes with me, calming me down enough that I could go back to work. After he was doen with patients, we looked at my MRI films and compared them to the ones from three years earlier. On the new ones, I could clearly see the lesions. On the first ones, there were not even any shadows, so as much as I wanted to blame them for missing it the first time, the truth was we didn't do enough tests to catch my MS the first time I had symptoms.
I called my husband once I calmed down a smidge and managed to say the words for the first time. I don't think I said them again out loud for months. By the time I got home, he had been on line and had an action plan. He knew what the recommended treatments were and how the disease progresses. To this day, I think he may have a better understanding of it than I do.
He didn't coddle me that day and I think that's a good thing. If he had been too nice, I would have fallen apart. Instead, he, like my doctor, was matter of fact: This is what you have and this is how we fight it.

Monday, June 25, 2007

Vacations and MS...a not lovely combo

The decision to visit New Orleans in May had been decided by factors beyond our control, like when we could take the vacation time. So, it was a bit hot when we arrived.

New Orleans is about 10 hours from here by car and since this was before the days of $3 a gallon gas, we decided to drive. It meant we could stop along the way if we wanted and we would have our car available to drive out to the site of a swamp tour we wanted to go on.

Now, I had been to New Orleans, specifically the French Quarter, before and knew we would be walking a lot, but I had no idea how miserable that would be.

I drove the first portion of the drive, about 4 hours, to West Memphis where we stopped for breakfast. By then, my right foot was starting to seriously ache from being in the same position too long and I sort of limped into the restaurant. My husband decided to drive after breakfast and drove the rest of the way into the city.

We got to our bed and breakfast about 6 p.m., check in and then decided to farther into the French Quarter for dinner. We wandered down to Decatur Street and found a great restaurant and had way too rich a dinner. By the time we got to dinner, my back hurt some, but I rubbed it a bit and then it felt better when we sat down.

After dinner, we wandered aimlessly back toward our hotel, over shot it by a few blocks and ended up with a mile walk back. By then it was dark and people were heading to Bourbon Street. My back was killing me and I had to stop every so often to put my fist in my lower back to rub out the knot forming there.

My husband was furious. I was stumbling along, clutching the nearest building for support and had tears streaming down my face. To try to maintain my balance, after falling three or four times, I was walking very rigidly and looked for all the world like a really tense drunk.

By the time we got back to the hotel, my husband was ready to pack up and come home. "You new this was going tobe a lot of walking, how can you be so out of shape," he grumbled. Through the tears, I tried to explain to him that it wasn't that I was out of breath or tired or anything like that, I simply could n't feel my right foot and my back had completely seized up. He continued to bemoan how foolish I looked, how it took an hour to walk such a short distance and the loss of our walking vacation until I took my shirt off.

Where I had been rubbing my back, trying to figure out why it seized up like it did, there was a fist-sized bruise and a giant knot. He felt awful, apologized a million times, and rubbed the knot out of my back. Then, we had to reevaluate. Should we stay and go ahead with our vacation plan even though walking killed my back?

We decided to sleep on it. By morning, my back felt a little better and we had developed a plan. Short walks with lots of breaks to sit and rest my back. It worked and we had a wonderful trip, but what I didn't know was all that was the beginning of an MS attack.

We got home and recovered from the vacation for about a week before I noticed the new problem. We were sitting watching television when I discovered that if I looked at things off to my right, I was seeing double. At first, I blamed dirty contacts. I knew better, but I liked it as an explanation.

So, since I worked for an eye clinic, I asked the doctor at work that afternoon to examine my eyes and tell me what was wrong. His diagnosis: 4th nerve palsy. The nerve that tells your eye where to focus when you look to the right, in my right eye, had stopped functioning properly. It would focus anywhere else, but not to the extreme right.

This was an optometrist, not an MD, but he told me there could be a lot of different causes, from old muscle damage that I didn't even know about to diabetes to neurological disorders and sent me to see one of our ophthalmologists. To save time, I called the MD where he was working at one of our other offices and asked if there was testing I should do before I saw him. He ordered a visual field test and blood work to rule out diabetes.

I got the blood work done and did my visual field. I knew right away from it that something was wrong. It showed an overall dimming of my vision, like I couldn't see very faint lights. Two days later, I saw the MD and ran through a thorough medical eye exam. He confirmed my optometrist's diagnosis and started digging for a cause.

I think he knew then what it was, but he tried the less serious diagnosis first. The bloodwork had ruled out diabetes. So, he wanted me to have a CAT scan to see if there was muscle damage that was somehow impairing the nerve movement. By now, he had told me that by neurological causes they meant MS, Lupus or ALS. I think that may have been the first time soemone prayed for muscle damage.

Since I scheduled tests with our local hospital all the time, I was able to schedule my CAT scan for the next day. And, since I worked in a small office, I was able to see my results later when they faxed them to the doctor. Nope, no sign of muscle damage.

My MD was working in another office again, but I called him with the test results and asked if he needed to see me or if I needed to go ahead with the MRI we had discussed. He said to get the MRI of my brain. I said I would call the open MRI center to get it schedule and he told me no.

No? They aren't as accurate as closed MRIs, he said, and if I was that claustrophobic he could give me something for it, but I had to do the closed MRI. So I called the hospital and set up my test for Friday morning before work. The MD was in my office that day and said he would run over to the hospital at lunch to look at my test results.

I knew immediately after lunch that something was seriously wrong. This particular doctor always came in from lunch and sat at the desk next to mine and checked his email after lunch. This time, he didn't. He immediately started seeing patients and when he brought the first one up to check out after lunch, he was halfway back down the hall before he told me over his shoulder, "We need to talk later...."

Saturday, June 23, 2007

On toward a diagnosis

In August, 2004, my husband picked me up from work and as we were turning into the driveway of our house, we were rear-ended. I was, of course, being somewhat stupid when it happened.



He picked me up at the office where I worked and I had some files I was bringing home and only a couple miles to get home, so I did not buckle up. Bad choice!



Then as he bagen to slow down to turn into the driveway, my husband looked into the reaerview mirror and said, "Oh, don't hit me!" I, of course, looked over my left shoulder to try to see who or what should not hit us. That's when we got hit.

The speed limit in front of my house is 30 miles per hour, but it is a three-lane highway and people often speed. The college student who hit us was new to town and doing about 45 mph. My husband hit our brakes so hard, to keep us from hitting the retaining wall around our yard, that he popped the brake lines.

The initial inspection didn't look too bad for my car, the rear bumper just looked seriously caved in. We filed the police report and the hubby ran off to class. I called the insurance company while he was gone and filed a report. They recommended going to the emergency room. I scoffed. I was in pain by the time my husbandgot home from class.

Now, accidents are bad at anytime, but I had plans to fly out 36 hours later to Michigan to visit my family there. I most certainly did not have time to be in pain. Too bad I didn't get a choice in the matter.

When I saw the chiropractor they determined that I had ripped every muscle in my neck and stretch many of the tendons....ahhh, the joy of serious whiplash. And, they told me it would feel the worst about 3 days after the accident. I was instructed to take anti-inflammatories like ibuprofen, wear a neck brace whenever I was in a car, and come back after my weekend vacation.

I lived on over the counter pain meds for the next week and then started a course of massage, physical therapy and chiropractic care that lasted almost six months to restore full mobility to my neck. It also reduced the "sciatica" symptoms I had been having, so I figured the accident ended up being a boon.

Nine months later, my husband and I planned the first real vacation we had taken in years. We planned to take a week in New Orleans and see everything. We had been there a decade earlier when we were first dating, but hadn't been back.

October, 2005, had been our original target date for the vacation, but we ended up having to go five months early because of our work and class schedules. Thankfully, again, this was a boon, because it means we made it to New Orleans before Katrina.

Friday, June 22, 2007

Whacked out day....


I'll get back to my journey to finding out that I had multiple sclerosis later. Now, I want to share some words of advice on things not to do when you have MS, 'cause I did them today and boy do I feel dumb.

It's a bad idea to be hot when you have MS. A friend at myLot.com says its like when your wirings shot anyway, making the wires too hot lets them short out...today I feel like he's right.

My hubby's a photographer and needs to shoot today, so I went with him. Unofficially, I am his cheering section and sometimes extra stuff carrying helper. Usually, I just watch. But today it was 94 degrees out and I went anyway. That was dumb move #1.

Dumb move #2 was going to lunch at a new restaurant. We went to this place in Marion called Burgers & Cream...they have real, old-fashioned custard ice cream and handmade burgers.

Now, I know better than to eat all those heavy fats and sugar, but it tasted good...for about five minutes, then I just wished I had a salad.

So the lesson today is no sticky, fatty,greasy foods when you have to be out in the heat. It leads to icky evenings.

On to the Neurologist

The first visit to the neurologist was schedukled for late June and my insurance company called at some point wanting to know why I had been referred to a neurologist. To be frank, I had no idea. So I called the doctor.

"Why exactly do I need to see a neurologist?" I asked the nurse because getting in to see the doctor was more than a bit frustrating.

"To figure out what's wrong with your foot..." she replied.

Duh. I knew that. Okay, try again. "What is the diagnosis we are looking for?" God, I sound like an insurance company. Must be because the hubby was at that moment working for Blue Cross/Blue Shield.

"Probable MS". She was matter of fact. I was crushed. It was like a life sentence only worse. I imagined all the possible scenarios and let's just say I was not impressed.

To be honest, I knew very little about the disease at that point but I was crushed. I called my husband at work. He did the initial research to tell me what it might mean and told me not to worry about it until we found out for sure.

Finally, we got to the actual day of the doctor's visit. It was miserable. Nerve conductivity tests are not excruitiatingly painful, but they aren't comfortable either. I ended up with small burn marks on my lower leg from the pins used to conduct the electricity.

I did a lot of heel to toe walking and some balance exercises and learned that I had once again been sent to a closed mouth doctor. I hate that! If you are about to tell me something devastating about my life, please at least talk to me about it.

Instead, at the end of the hour plus visit he pronounced that I did not have nerve damage and that I needed further tests, specifically an MRI of the brain. We would be looking for lesions, the easiest evidence that I did indeed have MS.

Now, I had just had an MRI of the spine and it wasn't cool. MRI's are loud and enclosed and I have always been more than a little claustrophobic. I mentioned this tot he nurse who was setting up the MRI. I should have kept my mouth shut.

The kind nurse offered to set up my MRI at an open MRI center instead of the hospital. It seemed like a good idea at the time. Two weeks later, when I had the MRI done, I didn't know why I hadn't just gone to the hospital. The so-called open MRI was almost an as enclosed as a standard MRI and the test was just as nerve-wracking.

But when the radiologist read the reports, it showed no evidence of lesions. Like that, I was dismissed back to the care of my regular doctor. The possibility of MS was denied and I didn't even have to go back to see the neurologist, until three years later. By the time I saw him again, I knew he had been wrong the first time, but he was the only neurologist available, so it was back to see him again.

I made some major mistakes in that first round of diagnostics. I accepted it when they told me that MS was not the cause for my symptoms, and did not push overly hard for them to find a real cause. Instead, the doctor told me to lose 30 pounds, consider learning tai chi or other stretching-based exercise, walk more and come in for pain meds and muscle relaxers when my back seized up too much.

I had to visit him twice over the next three eyars when my back hurt so much that I couldn't lift my right foot to get into and out of my car. I found I didn't like muscle relaxants as they made my head feel fuzzy and pain killers just put me to sleep, but I suffered through with my diagnosis of sciatica until August, 2004, when my husband and I were rear ended. the subsequent treatment for whiplash made me question a lot of the things that my doctor had preached including his insistence that I avoid chiropractors.

How This Happened to Me...

The doctors diagnosed me officially with multiple sclerosis in 2005, but in the summer of 2002 I had my first scare with the disease. Turns out, they were probaby right with their initial diagnosis then and wrong when they told me I didn't have MS.

It actually started in December, 2001. I was wrapping Chrstmas presents and got a strange muscle pull in my back. I thought it would go away, so I simply treated it with rest and heat for a few days and suffered through the holidays.

In January, it was no better so I went to see a chiropractor. Shortly after that, things got weird. The chiropractor solved the back problem, but after about 3 weeks of treatment, I noticed that my right foot felt asleep all the time. So I went to see my genral practitioner.

Apparently, he was territorial or one of those doctors who thinks chiropractors are quacks, so his first advice was to stop seeing the chiropractor and to get new xrays of my back. I did.

Then, his office decided to terrify me. the called me at work to tell me I had a mass in my spine. No more information than that and no you can't see the doctor before tomorrow afternoon 'cause he's busy. He's busy?!! you just told me something is wrong with my spine and I can't see the doctor for more than 24 hours to tell me what it is because he's busy?!

Thankfully, my boss was an understanding woman and let me go home. I wet straight to the doctor's office. Turns out, he wasn't even in the office, but when you yell and cry enough, eventually a nurse feels sorry for you and reads your test reports. Turns out, I had made it my first 32 years of life wihtout anyone noticing that I had spina bifida occulta.

Spina bifida occurs in development in the womb when for whatever reasons, possibly a lack of folic acid, the spine does not form right. Occulta is the modifier to say, "Oh, it's not that bad." Generally, it means a minor abnormality with the spine. Mine was that three of my lumbar vertebrae don't close completely on the surface. the doctor said it could make it slightly easier for me to get a spinal cord injury but was nothing major to worry about.

And, I had a sixth lumbar vertebrae. Normal people have five. I have an extra one.

Oh, and that mass in my spine....well, apparently, they weren't sure what it was exactly, so it was off to the hospital to have an MRI of the spine.

A week of worries later, the MRI report showed that in one spot near the incomplete vertebrae, my blood vessels, mostly capillaries or just a little bigger had turned into a pile of wet spagetti instead of growing properly. Again, they assured me, no cause for alarm. But also, ne explanation for my foot numbness and by now the numbness had begun to spread towards my knee.

The answer was a referral to a back surgeon for evaluation. that took weeks to get and in the meantime, I tried to play tennis with friends. I was okay when moving to the eft, but when I had to run to the right, I would suffer instant muscle weakness and soetimes fall down. This did not make for a long game of tennis.

When i got in to see him, Dr. Mellion was a wonderful help. he explained my spinal abnormalities better than my regular doctor had and assured me that my spine was in as good condition as could be expected for someone my age. My age!!!! I was 32 years old, not exactly Grandma Moses and now, I'm falling apart? Give me a break!

But nothing to do with my spine explained what was happening to my foot, so on to the neurologist....in 6 weeks when he had an open appointment.

Thursday, June 21, 2007

Introductions and Things

This is my new blog about the things that concern me the most: MS and the news. I envision that there will be times when it will also stray in topics involving my favorite artists (visual, not musical) and my cat. I might even occasion mention the man in my life, but well, if I talk about him too much, he'll just be annoyed.
So, this is my story. I hope you'll find it helpful or funny or just so danged annoying that you have to read it.

Printer's ink is in my blood, I'm convinced of it. It's not that any members of my family have had the passion for the print media that I have. It's just that after ahndling so many newspapers, I'm pretty certain that the ink begins to sink in. There was a time when I thought my fingers were permanently stained black from the ink.

So, I got a couple degrees in journalism and worked in the field for a few years, and then discovered that it interfered with having a life. But I couldn't quite get the news out of my system and a year ago came back to it, working as a fulltime freelancer, for print papers and for websites or whoever pays.

Two years ago I also found out that I have relapsing and remitting multiple sclerosis. I am actually one of the luck ones. So far, my case seems mild and I have been able to avoid relapses, but it hasn't been easy and I can't say tat I like what I'm hearing from others with MS.

I was never really the outdoorsy type, but I have always measured my freedom by my ability to get up and go wherever I want to. My MS has prevented this. I have a relay problem between my right foot and my brain. I think maybe my foot led the mutiny.

However it happened, I find that the major effect of my MS is that sometimes my right foot simply won't do what I tell it. This is especially difficult when walking or driving a car for long periods of time. Combine the two, like say try to walk after driving for two hours, and the result is miserable. I look like a drunken zombie, arms out-stretched to try to maintain my balance.

But I remind myself, on my good days, that I am a lucky one. I can still walk and do it without a cane or walker or wheelchair. On my bad days, I remind myself of the things I can't do like play tennis or enjoy a steaming hot tub.

Yeah, of all the things my MS took away, I think I miss steaming hot baths the most. Heat is bad for MS and I used to love taking a hot bath with a nice book of brain candy (also known as a romance novel). I never particularly liked extreme heat, but now I find that a summer trip to the grocery store can sap my strength for the rest of the day.

I was officially diagnosed with MS two years ago, but I am fairly certain that I have had it for six years. The first time I was tested, I had all the major symptoms, but the MRI came back clean so the doctors decided it was just sciatica. Stupid neurologist! And stupid me for not demanding more testing! But hey, who really wants to ask them to check again when they tell you they were wrong about the horrible diagnosis. I should have, but well, 20/20 hindsight and all that.