Before Betaseron

In 1991 I was 26 and working as a waitress in a local pub.
 
I started to get brief moments of what felt like a buzzing in the back of my head that prefaced a loss of all strength; whatever I was carrying I dropped. Eventually it was happening every ten minutes or so and lasted for about 20 seconds.
 
Unbeknownst to me, the neurologist I had been sent to suspected I had MS. In those days an MSer was usually only given a possible diagnosis on the first visit, then probable based on observation of repeated incidents over time. There wasn’t even a test to definitively diagnose it.
 
The MRI
 
But it just so happened that there was this newfangled machine called a magnetic resonance imaging (or MRI) machine that would work like an x-ray but better. It would show him detailed pictures of what was inside my head. And he wanted me to go get a scan from this machine.
 
It was still so new (and expensive) there was only one in the entire SF bay area. When I got there the tech just told me they would do it twice: once as-is and the second time they would inject me with dye and scan again.
 
I laid in the machine and heard all this banging around me and contemplated what they were seeing and waiting for the injection. But after the first round of scans the tech came back and said they were done and I could go home.
 
The quasi-diagnosis
 
I realized later that they didn’t give me the second scan with the dye because they didn’t need to, that they could see the lesions without it.
 
Anyway, the doctor told me I had probable MS. Even with the confirmation of the MRI, which could show multiple brain lesions in a live person as opposed to autopsy after death, the presence of multiple lesions only mostly confirms it.
 
And at the time there was no treatment, nothing they could do. He told me all he could recommend was that I go home and move to the first floor and prepare for a possible wheelchair future.
 
The new era
 
Then in 1993 just two years after I was diagnosed, the FDA approved the first drug for MS, now known as a disease modifying treatment (DMT): Betaseron. It is produced by Bayer Healthcare Pharmaceuticals but even today they still don’t understand exactly how it works.
 
Researchers do know it is a protein produced naturally by the body in response to viral infections. And that one of the things it does to cells in the nervous system is to direct them to produce less pro-inflammatory and more anti-inflammatory agents.
 
They believe that by reducing inflammation in the brain, we will ease the still unexplained attacks by our own immune system on the myelin sheaths that insulate the fibers that connect our neurons.
 
(phew, I can see I need to back up and do a future post on the nervous system!)
 
What I concluded
 
For this story the point I’m trying to make is that the delivery system of this drug (a sub-cutaneous self injection every other day) seemed too extreme for the 26-year-old me since I had no symptoms. Also it was a brand new drug. I didn’t want to be a guinea pig. I thought it was fine to wait. I was wrong.
 
Next time: Anxious Avonex
 
As always, tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
 
Other stuff
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My lil’ meningioma

After my routine MRI last year, the resulting report noted at the bottom that what was previously thought to be a white matter lesion along the right, front part of my brain, consistent with MS, was actually slowly growing larger and thus more likely “a small meningioma.”

After my routine MRI last year (8/17/2010), the resulting report noted at the bottom that what was previously thought to be a white matter lesion along the right, front part of my brain, consistent with MS, was actually slowly growing larger and thus more likely “a small meningioma.”

My new neurologist wanted me to have another MRI, at her facility, which I did on May 4th, and then OH and I met with a neurosurgeon to review these scans.  He told me that yes, it definitely looked like a meningioma.

[I asked if he really could tell it was a benign tumor without doing a biopsy and just by looking at it; he assured me that he could—something to do with smooth versus jagged edges, etc.]

He suggested that I not wait until it got any bigger to decide what to do about it.

[I asked if I would for sure have to deal with it eventually; he replied that yes, since we knew without a doubt that it was growing, albeit slowly, sooner or later I would have to deal with it.]

His recommendation was that I have one-time, outpatient radiosurgery, a “Gamma Knife treatment,” while it was still small enough to do that; otherwise, once it got bigger, he’d have to open up my skull and remove it. Brain surgery!

So that’s what we decided to do (and by “we” I mean “me”!).

The night before, I agreed not to eat or drink anything after midnight. Early the next morning, we arrived at the hospital, I in my wheelchair, wearing loose, comfortable sweats and carrying my morning meds and vitamins. 

The nurse that we had met the day before now met us at the procedure area and reviewed my various pills, then told me I could have something to eat after the head frame was attached, and I’d had the MRI that would show doctors exactly where to aim the lasers.  I could take them at that time.

In Gamma Knife, a frame of aluminum alloy is attached to the head, which looks heavy and a little scary [see pictures below; I tried to get the pictures of myself taken with the nurse’s cell phone, but these give you an idea].  But the skull itself is not drilled into, just drilled up to, and the frame is only about 6 lb.

 

 

1. Head Frame for Radiosurgery

2. Head Frame Attached to Live Person (not me!)

 

Before attachment of the frame, an intravenous (IV) line was inserted at my left wrist, and I soon felt very calm, warm and relaxed.  Ah, the Ativan® fog.  Good stuff.

Next I received four injections of a local anesthetic, two in either side of my forehead and two through my hair in the back of my head to numb the spots where the frame would be attached to my head.

This was when it became more traumatic for OH than for me.  He was watching me, observing all the shots, but once injected just under the skin, the anesthetic made golf-ball size swellings at each injection point.  He was morbidly fascinated but couldn’t tear his eyes away. [I got the story later but at the time was in a blissful haze, feeling little to no pain.]

Then the frame was attached and the pins that held it on firmly were tightened by hand. [I guess some doctors use a small drill but my nurse said the sound of it caused some patients anxiety.  Imagine that!]

Once the frame was secured in place, I was wheeled upstairs to an MRI machine and got a quick scan.  This picture and precise measurements were taken to pinpoint the location of the tumor.

 So after going for the scan, I was wheeled back to the staging area to eat, drink and nap until it was show time.   Since I was the only patient scheduled for Gamma Knife that day, OH was offered the second bed in the staging area, and since we’d been up so early that morning, we both drifted off to sleep almost immediately.

Meanwhile, my medical team – including a physicist! – were working together to determine the appropriate radiation dosage and develop a computerized treatment plan.  When they were done, the nurse came back to get me. It was “show time.”

I was wheeled into the treatment room, transferred myself to the unit’s bed and my head frame was locked into position.  The nurse had explained that while the machine looked like an MRI machine, the actual procedure was so quiet that patients often asked, when told it was over, “Did you even do anything?”

Now, she leaned over me and said, “What kind of music do you like?”  We settled on The Beatles and she told me I’d be lying down for about 45 minutes, but that there was a microphone through which I could talk to my doctor, so if I needed to take a break, to just let them know.

She started the music, left the room, and I drifted in and out of Beatles’ songs for 45 minutes.  I never needed a break.

Then she was back, helping me transfer myself back to the wheelchair, and wheeling me back to OH in the staging area.  The head frame and the IV were removed and there was minimal bleeding from the pin sites in my forehead but I shouldn’t get them wet for 24-48 hours.

Before we left for home, she admitted to me that there was a small chance that a bit of my hair in the front would fall out temporarily a few days after the procedure but that it would grow back.  As far as required pain medication, she and the doctor both told me that I shouldn’t need anything stronger than regular ibuprofen.

She also told me that, in the remotest possibility some healthy tissue was also damaged by the radiation, losing its ability to regulate fluids, for example, the neurosurgeon might prescribe a mild steroid to treat. We should keep an eye out for mood changes or sudden bouts of irritability that might indicate that. 

Yeah, right.  Like I’d be able to tell the difference. :) 

We were home by 4:30 that afternoon wand I had taken the next day off from work just in case.  I slept soundly that night and the next.  I had a little headache pain the next morning but nothing since, and sure enough the ibuprofen handled it.  So that was my big adventure last month.

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Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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Something else in my head

My neurologist tells me I have “transitioned” to Secondary-Progressive MS and my MRI notes an increase in one lesion that may instead suggest a benign tumor.

In July, my neurologist told me at my yearly appointment that I had transitioned to Secondary-Progressive MS (SPMS) and that the medicine I'd been self-injecting was obviously not slowing my progression so I could discontinue the daily shots and he then ordered my regular MRI.

So in August, I went in for this scan, first without then with an injection of contrast dye. 20 years on with this disease and I am so used to the procedure I even nodded off at one point which is quite a feat because the banging and noise is loud.

I have online access to my partial medical records, not the scans but the summary reports, so a few days later I got a reminder that the report had been dictated and was posted to my online account.

When I read it, it seemed pretty straight-forward: compared to previous scans, "there has been interval progression in disease with interval development" of multiple new lesions (as I'd expected).  In addition, several of the previously noted lesions "appear to have increased in size." (crap)

Still, pretty much as expected UNTIL I got to the bottom: " …there is a 1 cm presumed extraaxial  enhancing lesion seen along the right frontal convexity which appears more prominent in size in comparison with prior examination and may represent a meningioma." (What is a meningioma and how long have I had it if it's increased??)

Now my last MRI was Feb. 2007 and 'meningioma' is not mentioned (maybe not yet by name?).  And in my Nov. 2005 MRI is a note that my largest lesion appears to be 5mm in the right front of my brain (oh, maybe this is it).

I switched over to the National Library of Medicine's Medline website (http://www.nlm.nih.gov/medlineplus/) to look it up.  This is what I read:

"A meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant)."

I didn't know what to think, but went downstairs to ask OH what he thought.  Worried (understatement!), he insisted I make a follow-up appointment with the neurologist to look at the actual scan.

So I emailed my neurologist's nurse asking "What does the doctor think about this? Should I be worried or should I not be worried? Or should I not be worried yet?" (As an aside, I LOVE having this kind of access to my doctors!  It costs about $60 a year but is so worth it!)

She called me back and set up an appointment for early September, saying he was taking vacation that month but nonetheless would be coming into the office to see patients in the mornings.  I decided that if he hadn't called me immediately after seeing the scan results, he wasn't worried so I wasn't going to be either.

At the beginning of this month, OH and I went to see the scan.  And plain as day, we could see a mass about the size of the tip of my thumb.

My doctor immediately assured me that a meningioma is almost always benign, slow-growing and not a threat to the brain tissue.  He said that it was at an easily accessible location if we wanted to have it removed, but that the surgeon would probably not want to do it yet: it's small and slow-growing.

He recommended that, for now, we just keep an eye on it, that I have another MRI in 12-18 months to make sure its slow-growth isn't accelerating.

I let my GP know what was going on and what course of action the neurologist suggested.  Without hesitation, she concurred with him. 

So, we're waiting and watching and that's the latest from here! 

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