Nani's MSBS

I never intended to take a long foray into medical blogging. Sorry if you are here looking for cute baby pictures. I hope this makes up for it. 

                             
                                          She still really likes the fan. If she got her shoulder a little more exposed this could be a true 80s photo.

I promise to wrap it up soon, but fist a correction. The other day was INTERNATIONAL MS Awareness day. Not National. No idea how I got such an auspicious occasion pegged wrongly. Actually I have lots of ideas. They mostly start with "Mom!......" and end with "So what?"

Flippancy aside, I had considered this post's title as  a separate site to catalog some interesting things I've come across along the way to nowhere and which I might want to keep an eye on in the 'what is happening to my brain?' department. Along with some personal  updates for my records which are to date loosely kept in my head.  Which is not a super secure or reliably easy accessible location these days.

The latter reason I feel a bit funny about ( no one wants to hear about your hurty knee). But I've found over the years I appreciate learning  from other's experiences, research, experiments,  or mistakes. Why not add my own? And I'll promise to keep it clean, Though if you've read some of my kids' antics and you've come back, I think there is not much of a problem with what you can handle.


So first in the fascinating field of research, is this new discovery. Which could lead to new mechanisms for delivery and therapies for a host of diseases. Which is great news considering this study. Though technically previous studies would have put me firmly in the progressive and wheelchair bound camp  several years ago. So I take them all with a grain of  salt.

And when studies are given grants to study the prevalence of falls in the MS community, I kind of wonder about the seriousness of the researchers. Let's  take a group of people prone to balance issues, sensory issues, and feelings of not knowing where their limbs are in relation to anything else in the world and see if they fall down. A lot. Sounds like a prank more than a study. Wish I could get my hands on some grant money for a study or two. I'd find a way to work kiwi mojitos and white sand beaches into it for sure. And I would sacrifice myself for science and offer to be a guinea pig. (As the parameters of this study have not been set,  please do not send applications at this time. Donations? Why not?)

Its a fun game of extremes I often play. Something new will pop its head up and present  limitless rabbit holes of research and articles to follow. And for a second I feel a glimmer of, wait , what's that? Could it be, hope? And after weeks of excavating and spelunking I come up for air and realize, no. It was just the triple cream brie smooth talking, and now its gone. And all that's really left is a host of poisons that may or may not help me before they kill me. And the cheese rind.

But since we've come back to reality, we need groceries, and obviously more cheese. So then it's head down and back to the daily grind until the next shiny object  appears. Tune in next week for More of What Is Not Here That You Hoped Was and Most Likely Never Will Be. Amen.

Generally when I start these meandering journeys I  often get inspiration from Wheel Chair Kamikaze
Also when I come across something I don't quite understand, like most of it, I think 'I'll just wait until Mark explains it.' Sometimes it helps. Or I think it does and that's enough for me to go running to my neurologist asking for her thoughts secretly hoping it will earn me points in the 'sure her brain is atrophying, but she's still really sharp' department.  I don't know if it works or she silently adds points to my EDSS rating with each new discovery. Ignorance is bliss. I'm happy.


I am actually planning on picking her brain, ha ha, seems only fair, on the discovery of a  lymphatic network in the brain. Maybe she'll write back its old news, or junk news, or only pertains to mice and we're back to square one and mai tais.  Or maybe the discovery could shed light on how rogue immune cells get to the brain to attack the myelin. Not a porous blood brain barrier but a secret backdoor through the lymphatic system. But I still have my skepticism (I have  a lifetime supply) Are  the cells there to destroy the myelin, which has been the current thinking ,or to clean up what is already falling apart? Which has been bandied around for a little bit. But  since there is an Internet and no answer that has produced a cure, anything is  fair game in my book. Or blog.

I'm so confused

Which is nothing new. I found this post that apparently I forgot to  publish. It was interesting reading but feels like old history. But seeing as how it might come in hand to have something new up- like for those who are in bed puking like I was for weeks and always got super excited when I found something new to read- thought I'd throw it up anyway.

Rewind  9 months.

Baby is growing quite well. Kateri says my tummy  is bigger every morning. It certainly feels like it. I finally went shopping for some clothes. Shane said some of my things were getting a little squeezy. The next day I took them all back and started looking at maternity clothes instead. I thought I could get away with anything stretchy but it did not go so well. The  last time I really went shopping for maternity clothes, designers assumed you had grown to the size of a small SUV and that it would be great fun to put horizontal stripes and lots of funky gathers everywhere. And bows. Seriously, who needs rouching on an already sizeable piece of tacky floral print fabric? Of course, that was before all the actresses started having kids and making pregnancy another fashion opportunity for labels. I guess I am thankful for that.

I will be 17 weeks this Friday. Shane and I got to go hear the heartbeat again last week when I had some, still unexplained, bleeding. So far, in my pregnancy experiences that has only meant one thing. So I called my sister and she brought me supplies. Then I called Shane and he came home. Then the midwives called back and asked me to come in. Shane, wisely, told them we'd head in after I ate lunch. I can go longer stretches without snacks but it is best not to depend on that.  I felt completely fine and not at all like the other miscarriages. No hormone weirdness. No nausea or cramping or feelings reminiscent of transition. But it was reassuring to get checked out and hear the heart beat steady and strong. If it happens again we'll do an ultrasound, other wise we'll wait until the 20 week mark to get one. Which is fast approaching.


I am mostly caught up from appointments which had been put off due to the morning sickness. I still have Kateri's annual hearing test and check up, but they were booked out until July. And I need to get new orthodontist appointments on the books for the kids.

I did make it to the neurologist, though I am thinking I might look around some more. The new one is fine and I suppose I can't expect to just 'have' a relationship in one appointment, but it does not feel urgent right now anyway so I am fine for now. I just was not super excited or inspired by the visit. Not that is didn't go well. We did discuss some annoying symptoms I've been having off and on the past couple years where when I try to lie down to sleep, my leg- more specifically my calves-will spas out. Almost like a not painful charlie horse. Just a slow tightening of the muscle sometimes accompanied with a little jerk. I tried having Shane massage them and it helps a little, but when he stops, it starts. If I stand up I can't feel it, but I don't sleep standing up. So usually I get up and distract myself on the computer for a couple hours until I am tired enough to fall asleep anyway. I find my legs will sometimes feel sore in the morning- like I did have a bad cramp-so I am thinking I can count those nights as work out nights, no?  The only thing the Dr had to offer was muscle relaxants, which I have heard relax everything. I didn't know if that was code for 'you need to wear a diaper to bed' if you take it or 'your whole body will feel like rubber but  it is not every night so I have not tried anything in the past. And now I am sure I wouldn't be able to. I have found taking magnesium and potassium help  and stretching before lying down. It might be good practice for getting into a routine of not sleeping much at night and finding ways to pass the time but I still find it really, really annoying. Especially when it was coupled with morning sickness- sleep was the only reprieve I got.  Then Shane showed me Wordament, which works for now, but will be hard to play on my phone one handed while rocking a baby.

Maybe I should go back and see if the neurologist would prescribe massages for me. That kind of therapy I could get excited about. For now it is manageable so I'll just deal with it. Though I could still go for a deep tissue massage and a few hours at the spa. Maybe once a week would be good.

We've been having fabulous weather the past few days. I was a litltle caught off guard and actually got some really funky tan lines while watching the kids do slip'n'slide. Thankfully the next days were also very nice and I was able to correct the problem. It is very unusual to have gotten a dark tan in the middle of May. But I am so thankful it has been nice. The kids are living outdoors, I actually started planning and procuring some plants and seeds, and everyone is in a much better mood. Compared to a month ago, it feels like heaven. I will be super sad, but not surprised when it changes back to cold and rainy. Shane even went kiting today for the first time this year. He just got a new kite and board and was super excited to try them out. I told him it was his Father's Day present, which he is fine with.

Can You Hear Me Now?

Tomorrow I get my 'when it works for me' MRI. It was supposed to be in April, but go cancelled due to more important things. Or a person, I should say. I had the neurologist apt still scheduled for December. Seeing it was getting close, last month I called the office to see if I should get an MRI on the books as well. First I called the office.  But no one answered so I left a message with my questions. A week later, not having heard back,  I called them. And tried to leave a message with the receptionist. The words seem to have gotten through and I was told they'd get back to me the next day. A few days later, when I remembered, I gave them a call back.

It seemed like my request was new to them.

" I have an appointment with Dr. S next month. I was supposed to have an MRI in April but I didn't because I was pregnant. I want to know if she would like me to have one now, and if so, I'd like to schedule it so the results are in before my appointment with her. Also, I don't want the gadolinium this time, as I am breastfeeding, so would she still want me to have one?"


A few days went by. Finally, someone called.

"Yes, she'd like to go ahead and schedule the MRI. Breastfeeding is not a problem. Most women just pump and dump for 24 hrs after the MRI. "

"I don't want the gadolinium. Does she want me to have the MRI if I don't get the contrast?"

The next day,

"Yes we can schedule the MRI. The contrast isn't knows to be an issue, but just to be sure they recommend you wait 24 hrs before breastfeeding to make sure it is all cleared out of your system."


"NO", I said, trying to be really clear. "I don't want the gadolinium. I want the MRI. Do I need to get an order from the doctor or can I just call and schedule it myself?"

"So you don't want the contrast?"

"No."

"OK, I'll let the Dr know your feelings on that and get back to you."


Eventually it came out that, yes, the Dr did want to go ahead so I scheduled for tomorrow. The clinic called to confirm the appointment this morning and gave me a check in 30 min before the actual scan. I am going to just leave the baby at home with Shane so don't want to spend any extra time in the waiting room. I asked if I could come later. She said there will be some paperwork to fill out. I asked if they could email it to me and I can come with it filled out. She said I'd need a little time to get changed. I told her I knew what to wear I'd come in the appropriate attire, which honestly at this point only requires switching out a nursing bra for a sports bra. Sweat pants and a stretchy is all I wear these days. She said just show up 5-10 min before the scan.

And even though I might only be gone for an hour, I pumped a bottle, just in case. Which Kateri is super excited to give it  to Malachi. I suspect even if he is sleeping and content she might just 'accidentally' wake him up so she can feed him.

I won't know the results until next week when I see the neurologist, but getting it done tomorrow there will be time for the radiologist to look at and compare last year's scans and write up a report. The neurologist appointment happens to be on my birthday. My very first neurologist appointment was 22 yrs ago, one week before my birthday so I guess it is in keeping with the birthday/neurologist pattern. I think I'll have Shane take me and Malachi to see Skyfall later that day or something more birthdayish.

Gilenya or Tysabri? Decisions, Decisions

And no. Those are not names for future little Pattons. Although I could see a TV series 'Gelenya, Princess Warrior' being a big hit. Actually, those are the names of the two drugs I am supposed to choose between. So says my neurologist. I had a different kind of visit this time and I can't quite put my finger on why, but it was not very satisfying or inspiring. Maybe it was the fact that I wore my PJ's. Maybe it was just that time of the month. Or maybe it was the vegan cookie I ate for breakfast.
The morning started a little crazy when I called to confirm my MRI appt, as they had not called me the day before. As is their cutsom. To call, that is. Anyway, I did indeed have a 9:30 appt, but they were super booked as one of the machines had not been working the day before and they were trying to fit everyone in. The tubes are not that big and it was creating quite a back up. The receptionist asked how quickly I could get there.
I said 15 min. without traffic. But it was 8:00. So there was bound to be traffic. And I was still in my jammies.
'That's fine. We'll put you in scrubs when you get here. Just hurry.'
Jammies are well suited for MRIs as there are no magnetic fasteners to interfere. So I took a quick shower, had a sip of coffee, packed a change of clothes, and arrived in my pink flannel pants and t-shirt. There was traffic. So I cheated, never mind how, and got there in about 15 min.
They had the nice warm blanket ready for me and nobody gave me funny looks for my unbrushed hair or my PJs.
I chatted with the technician as he put the IV in. He asked how my MS was doing. I didn't know he knew. I suppose it said on the order somewhere. I told him I didn't know. I guess we'd find out. His cousin was diagnosed with MS a month ago. And is in a wheelchair already. I felt a little sheepish being able to hop on and off the MRI bed no problem. Especially as it has been about 19 yrs.
Afterwards I got dressed and found a comb in my purse. So my hair looked bettter. Not stellar. But better. I wasn't meeting Dr M for two hours, so I headed to Trader Joes for some snacks, then to Tully's for coffee and perusing of the WSJ, which I had had the presence of mind to pick up on the way down the driveway. Then I worked on my list of discussion points before heading up 30 min early to see Dr M.
The receptionist told me they could not find my appt- I had called them before I left to confirm as well-but that they got the MRI report and he could see me right then. So he did. I was a little disappointed as well that he didn't run the usual battery of tests. I had specially chosen my shoes to facilitate the walking heel to toe one. Also, last time, the nurse informed me that looking at your feet makes that one more difficult. So, if you ever need to, just look straight ahead. 
I think maybe he was a little  crunched for time, and that my have influenced the feel of the visit. Or maybe he was having a bad day. Or maybe it was any of the above listed reasons. I don't know. The  long. or rather short of it is he saw some persistent black holes on the scans- they were there in April-he does not put much stock in the 'diet as therapy' approach, so I decided to stop giving up dairy, and he'd like me to go on one of the stronger medications. Hence the fancy post title.
I did tell him that the left side of my face has felt a tiny bit odd. He said that was the side he was inspecting last visit. And my throat has not gotten better. Actually, I'm not sure about that entirely. I think it may have a little. But then again, I could just be used to it. He said relapses usually last  up to 6 weeks. Longer than that and its probably a permanent thing. He also reiterated that 90% of people go progressive in the first 20 yrs. After which, none of the medications can help. Of course there is that other 10% . But he expressed that he felt my case warranted some second line medication. He gave me my options and two months to think about it. Unless I decide sooner and call to tell him so.
I'm not thrilled about either option. Gilenya, sweet as it sounds, lowers your heart rate- you take your first dose at the hospital where they monitor you for 6 hrs. Then you take your colored pills and go home to try it on your own. It has nice side dishes of skin cancer, pulmonary issues- shortness of breath, coughing, pneumonia- edema in some part of your eye, which can lead to blindness, increased risk of infections, and there have been two deaths. Something about chicken pox. Which I had already, so that makes me safe. I think. Originally it was called 'fingolimod' and is somehow derived from a chinese fungus.
Tysabri was well publicized a few years ago and pulled from the market as there were deaths caused by PML,  a nasty brain infection. They think, now, that they can limit your chances of death by more monitoring.' Oh look. We were monitoring him. And now he's dead.' That last bit sounds a lot funnier if you read it with a British accent. Try it.  That's how I wrote it, and I thought it was funny. I was actually wondering the other day why it is that the Brits are so darn funny. And I don't think it's just the accent. They just really are a funny lot.
OK so they don't just monitor you, they can seemingly treat you if they catch it early enough. And they try to limit the time you are on the drug as every bit past 2 yrs or so increases your chances for death. So you sometimes take 'holidays' for a few months. But who knows what accumulated use might do to you. It has not been around that long. But is has been around longer than Gilenya and is just  a monthly infusion so not that big of a bother. Granted you're not killed by it. So actually I feel a little leaning towards it. I don't know what hell hole it was discovered in. I'm pretty sure there were no chinese herbs, fungus, mice, or spam involved. But I really don't know the secret recipe. It also has risk of other more benign infections as well.
There is a third drug I'm interested in 'laquinomod' but it won't be available til late next year, given it doesn't kill off all its trial participants. So I could pick one for now and maybe switch later. It's really difficult to choose. Pick your poison is definitely how it feels. But I have some time to research and sort it out for now. And I'll be having half and half and butter or whatever else suits my fancy while I deliberate.

Part III- or What Really Went Down

So I guess there is some confusion, or might be, as to the real outcome of my dr visit. So this is to tell the truth, the whole truth, and nothing but the truth. Or something like that. As Shane has pointed out, separating fact from fiction is not my stong point, and somtimes I do feel that a little creative history is more exciting. But I'll give it a try. As a disclaimer, I still have not yet received my formal debreifing in the mail so there may be some details left out. But I think I got the main points right.

So Yes- there was a new lesion in my cerebral cortex which corresponds to the muscle in my throat. I don't know the dimensions. Other than that, there was nothing noteworthy. None of the old lesions had "gone dark" or turned into black holes. Which brings up an interesting point. Generally, demyelination shows up on the MRI as discoloured spots. The lesions sometimes do heal themselves and a grey spot can disappear after ahile. When the damage is so severe that it has damaged the axon, which is what the myelin is covering, it turns into a black hole. Meaning all the myelin is gone, the axon is damaged beyond repair and there is not much you can do. Well, I had one of those a couple years ago, and in subsequent MRIs it seems to be MIA. Which is fine with me. I asked Dr M about that and he said that sometimes spots can show up that look like black holes. But they are not. If it never goes away, it is a true black hole. If it does go away, it was an impostor. Apparently the only way to know is just to keep watching it.

Yes, Dr Prineas is real. His work is real. And he is a respected pathologist who has brought some interesting thing to light. As far as "is this really autoimmune" goes, Dr M explained that there are two schools of thought on how damage occurs. One is "outside in" meaning the body attacks the myelin from the outside until it damages the axon. The othere is "inside out" meaning the problem starts in the axon, or the myelin itself, and somehow causes the myelin to fall apart, or whatever it does.  Another theory is that there are different kinds of MS, all of which lead to myelin loss and bad nerve conduction.  Which may make sense in that some people respond well to different drugs and some people don't respond to any.

As for me, given that the Rebif I was on did not halt things completely, Dr M said I can skip all of the interferons. Which I am happy about and had already given up about 6 weeks ago anyway. So no more chinese hamster ovary cell based injectibles for me.

But then he tried to sell me on Tysabri, which involves mice DNA. Can we please just cut out the animal parade? Of course that one also has the risk of  a fatal brain infection and as it has not been around that long, there are no long term studies that tell you 20 yrs from now you may sprout a tail and take a great liking to cheese. So I took the brightly colored information pack home and have it sitting up next to my bed. I have not been in need of any late night reading though, so have yet to discover how wonderful the drug is for my brain, in the event it does not invite some voracious guest in to eat it first.  Needless to say I"m not  sold on it.

So finding that Dr M did know of Dr Prineas and thought his work was real and important was just the first pleasant surprise. I told him I would think about the Tysabri. But in the mean time, could I try LDN. And he said yes. I was really surprised. It seems many neurologists will not prescribe it and consider it a sugar pill with an anecdotal placebo effect. I like sugar, so why not give it a go?

LDN, or Low Dose Naltrexone, is a very small dose, around 4.5 mg, of Naltrexone, a drug initially formulated and marketed for meth and alcohol addicts. In that dose, 50 mg, it works by inhibiting the opiod receptors. IN other words, you won't get the "high" you were looking for. In the very small dose taken at the right time, it temporarily blocks the receptors and causes your body to increase its endorphin production. I can see how that might attribute to a placebo like effect, however in a small study of Primary Progressive MS, all but one patient stopped declining for the duration of the study. It was short and small and no one has done a larger study or compared MRIs or followed people on it for 20 yrs. Dr M said himself there probably never will be. It is really cheap- $40 a month compared to $1700 a month for injectibles- and there is no big company to fund an expensive study. There is no profit for anyone to be had and to front all that money, just to make your drug look bad would be ludricous. ( There have been stories of tumors being shrunk and I think someone grew a leg back. Just kidding. About the leg. The tumor part was true.)

Well I am quite happy to do my own study. I'll be getting the pills this week, but I think I might wait until after our week end trip to Canada to start it. As far as side effects, some people say they have very vivid dreams. Not bad or anything. Just very clear. Some people find it makes their legs stiff. Others say the opposite for them. It does not hurt your liver. Pregnant and lactating women have taken it with no ill effects- although if it were me, I'd stop it anyway. No injection reactions, brain infections, flu like symptoms, and all that rot.

So, I'm tyring not get too excited. But really the thought of no more shots or interferons really is exciting. Dr M says he'll have me check back in 3 months and see how its going. And I can even get a Tully's coffee next time. I'm looking forward to it.

The only disappointment, and it wasn't really a surprise, was when he told me there was nothing I could do about all the scar tissue and skin hardening on my legs. Shane tried to tell me it was not so bad. Then he broke into the Madonna song "Like  A Sturgeon". Which was really uplifting. These are my thighs. They are not supposed to look like   fish. I guess I can't be too picky. They are very serviceable right now. And they do make knee length bathing suits if I get too self conscious. Guess I'll just have to play up my earrings more. Shane would be happy to get me some.

Thus ends my three part sojourn into the land of my brain. Its kind of  a scary place, even without black holes. But I thought it best to clear up any misleading or confusing information. And some down right lies. Far as I know this is all accurate. I'll check it against the radiologist's report and post any errors. Othersise, it's onward and upward in the land of raising and educating children.

On that note, the educating one I think, I'll tell you what  PUTBOOM is next post. Any guesses?

Part II

The door slides open. I imagine the sound track it should be making, and in walks Dr M. I am so thankful he's my doctor. Of all the neurologists I've worked with he is the most agreeable, accessible, and from what I can tell knowledgeable. He never rolls his eyes when I tell him I've read something on the internet. He takes my concerns or even just opinions seriously. And he is very willing to meet me where I'm at and work with me from there.

Today I'm really excited because I have been reading some new things I want to discuss. First he pulls up the MRI scans and we go over those noting any new areas of concern and checking on the old ones. A new one in the brain stem seems to correlate with the swallowing issue I started having a few months ago. He explains the other areas of interest as we go up the brain stem and out the top of my head. I had tried really hard to hold super still,  and also to keep my eyes shut so my eyeballs would not be rolling around. I can't remember if I did a good job or not. I was too caught up in my research and wanting to share it with him. He finishes with the pictures and I start right in.

"So I was doing some research and came across the work of Dr Prineas, the Australian pathologist. In reading them it seemed to raise the question of MS being an autoimmune disease, or at least challenge the current way we think about MS."

"Well, its is pretty well established that the damage comes from the bodies own doing. All the working therapies out there are predicated on that and they seem to work."

"But not for everyone. If interferons really work, why don't they work for everyone?"

He sat and thought.

"Dr. Prineas' studies seem to point to damage occurring BEFORE the immune system kicks into gear. Meaning it comes from somewhere else. Could it be that axonal damage comes from the macrophages death possiby due to a misstep in a protein to estrogen conversion. And their death results in myelin loss and the T cells and B cells just show up to do a mop up job?  And that by the time we see any activity it is always the immune system caught with the smoking gun. This might explain the gender inequity and why it is far more common in women than men."

He sits back and closes his eyes. Dazzled by my research capabilities I'm thinking.  He opens them, then goes  to his computer and starts pulling up files. He mumbles something about lymphocites and some other little guy. I just watch him work. He seems to be in his own little world and I don't want to interrupt him or ask questions. I catch something like 'how can this be, in a few months, she has discovered what we have not deduced in a life time of work?'

"I have heard of Dr Prineas, and his work is interesting. You bring up some fascinating points.  But we'd need Dr. Prineas to answer some questions.What is he up to right now?"

He clicks on  a little tab and a live camera feed pops up.

"There he is" Dr M exclaims. "It looks like he's going somewhere with that suitcase. Where is he going?" He seems to be talking to himself so I just listen.

"What's that in his hand? Maybe  a ticket. I'll zoom in. And enhance. And gotcha. Its not a ticket. Its a map with a route marked. Looks like he going to San Francisco.  But why? What is in San Francisco?"

He pauses,  his chin resting in his hand.  He jumps forward again.

"He dropped something. Let's take a look at that." Once again he zooms in. It appears to be a letter. From his daughter.


"Looks like he's going to visit family. Maybe we can intercept him at the airport. Can you take a trip to San Francisco? I think you should explain your hypothesis in person. I think the puzzle pieces are all there and Dr Prineas will be able to help put them all  together. We can set up a meeting at the French Laundry. This may be the discovery of the century. I think we'll need a good bottle of red and something tasty to celebrate it."

I tell him no, I can't go to San Francisco tonight. I have more research to do. And I am making tacos for dinner. But he needs to go. He can conference me in and I'll have a power point presentation to show both the doctors by dinner time.

He congratulates me, thanks me, then gathers his papers and laptop and rushes out the door. And I think what a fitting end that little swooshy noise would have been.



OK. So we've been watching 24 lately and I decided to borrow a few tricks I picked up. Especially Shane's favorite. The Zoom in and Enhance method. But some of this was true. When I get the final debriefing from Dr M- who first has to be debreifed by the radiologist- I'll sort the fact from fiction, if I can, and lay it all out next post.

Brain Day Part I

I had my MRI and neurologist appt yesterday. I am waiting to get the full report from the radiologist so I figured I could string out the day in a few installments.


In the morning I'm excited to drop off  the kids with Grandma and head on down for some "me" time. Me time being me, by myself, lying down. I can't get up even if I want to. Which I don't. I like getting MRIs.
I fill out the paperwork, then pick a chair by the fire and settle down to read the paper.
They call me soon  and give me a dressing gown, only it's pants and a top. And only like 10x my size. Luckily it has a drawstring so I cinch it as much as I can then wrap the cord around several times and am good to go. Next they put an IV port in. I liked the way they did it before. Just come in and give me a shot half way through. But I guess they found the scans were more stable or something if they didn't have to move the person and could just press a button to inject the contrast agent.
Last time the guy putting it in didn't get something quite right and when he tested it blood went squirting all over the floor. This one goes  just fine, with only a small bruise leftover  this morning.

So then we go to get set up in the machine. I lay down on the sliding bed and the assistant coveres me with  a heated blanket. I instantly feel realaxed and cozy and am looking forward to some"quiet time".The technician informes me that they are no longer able to use the music playing headphones, just some small ones for ear protection.

"That's ok. I usually don't have music with mine anyway."

"So you won't be able to talk to me then?" I ask hopefully. It was always kind of jarring when you are just starting to relax and then "OK This one's going to run about three minutes." Or  six minutes. It kind of interrupts the 25 min of meditation I try and get.

"Oh, no. I'll be able to hear you ,and let you know what's happening."

"Actually, I don't need any updates or anything."

"You have kids?" he asks.

"Yep. Four."

"I figured. Usually the people with kids just want quiet."

"Ok" he says, placing the squeezy alarm/eject thingy in my hand and adjusting the IV bag. "I'll get out of your hair and we'll get this done."

I lay back and he straps the head cage across my face.

"You're not claustraphobic?" he asks.

"Nope." I close my eyes." I'm good."

He leaves  and I feel the table slide into the big magnetic tube. Its dark and cozy and I could see how someone might get freaked being in there. But I'm glad I like it.

A few seconds go by and I hear the whirr of the machine with the familiar tweets and knocks. These first ones make me think of little StarWars ships firing at the Death Star in short little bursts.  Pew, Pew, take that Vader.Then along comes the deeper laser beam in long steady pulses. The big ships are coming.

The beeps give way to a series of knocks. Usually  a knock in the middle of the night heralds a wet bed or sick child. Something that requires my immediate action and gets my adrenaline going. But this time I know I don't have to rush to the door and am able to stay calm. And relaxed. I think about how nice it is that they give me warm blankets. I time my breathing to the rythm of the machine. Then I add a prayer.

 Lord Jesus Christ (Knock) Son of God(knock) Have mercy on me (knock) a sinner (knock).

The knocking speeds up and my respiration matches it.
There is a pause. I hold my breath, waiting for my cue. Instead, I feel a cool sensation in my left arm where the needle is. It radiates up my arm and I know they just injected the gadolinium and we are doing the second part of the scan. I'm glad they did not get to interrupt and tell me "Ok, you're going to feel a little coldness in your arm now."

The knocking starts again and I settle down to enjoy the little bit left. I'm thinking fresh warm blanket would be just nice right about now. I wonder if they would bring me one if I asked. But too soon, the door opens and they are sliding me out and unlocking my head. They remove the IV and wrap it tighly with a cotton ball and stretchy tape. She hands me my locker key and I'm glad it has my locker number written on it as I have no clue which one I had chosen. I retrieve my shoes and clothes and get changed. I'm still kind of groggy and looking in the mirror, I regret not having brought a brush. Oh well. At least I brought deodorant. They told me no make up, lotions, or  perfume so I always bring some to spruce up for the neurologist appointment.

Back in the car I realize I  have an hour and a half before I see the doctor. Shane couldn't come today so we could have lunch and I didn't want to eat out alone. So I get my snacks out and finish the newspaper and solve some word puzzles. I'm too smart and it doesn't take long to solve so I drive over to Trader Joe's and contemplate going in to get a little something to round out my lunch. Like caramel corn. There is an espresso stand across the street and I think that would go well with a treat. In the end I decide to drive up to hospital and wait in my warm cozy car, listening to music. It is made cozier by the downpour that is just starting. I guess  a hairbrush wouldn't have made much of a difference. So I opt for some lipstick instead.

I brace for the rain and run to the building. On the entrance a sign announces  "Tully's Coming Soon". I'm so glad. Ever since they moved to the new building I always lament the lack of a coffee shop. I can schedule that into my plans for the next appointment.



The nurse comes and has me do the usual walking test, which I always pass with flying colors. I think about asking her if I can skip, just to make it more challenging. With my luck I'd probably trip and do a face plant and the rug is kind of rough and would probably leave mark, so I don't ask.

She weighs me. I'm happy with the numbers. Then she subtracts three pounds for my jeans and sweatshirt. I say I liked the first number better. She laughs and writes down the second one.  She takes me into the room and takes my vitals. Everything is good. We chat a little. She adjusts the window shades to let more light in.Then she says the doctor will be in shortly and goes out the star trekish sliding doors. I wish they could put something on them so they would sound high-tech. A nice "swoosh" with a little suction sound at the end. That would be awesome.

I remember I didn't put my earrings back in yet and fish around in my purse for them. They are pretty green and gold ones Shane bought me on  his last New York trip. I like that his tastes are more exotic than mine and furnish me with things I would not pick out on my own but really like. I fumble finding the left earring hole. I feel a little rushed and panicky,  like I don't want the doctor to think I dressed up or anything and that I always just look nice and put together. So what if  I have holes in my brain. I just like to take care of what I do have. While I have it.

I get the earring in and sit back to wait. There is nothing to read so I enjoy the view out the  window. It's so pretty with all the green trees. Then the sun starts to peek out adding some gold to the landscape. Hmm. Kind of like my earrings.

Turn Your Head And Swallow

I had my annual neurologist visit this week. I totally kept my composure. I'm not sure if not having Shane there helped, or made it even more amazing that I did just fine. Anyway it was a very good visit and Dr.M was super understanding when I told him I didn't want to do the shots anymore. The last one left me with an itchy rash and I was running out of areas that are not full of scar tissue. He said someone with my frame would have trouble finding enough real estate and maybe I'd want to to try an intra-muscular one instead.  Not really sure why he thought I'd have an easier time with that, although the once a week did sound good.

He said he'd basically work with me and find something I would be able to do, as long as it was something. He also said I could take the rest of the week off, which I had already  started doing anyway. Then he brought up some other options- Tsyabri, a once a month infusion, but a few people on it have died of a brain infection. So maybe not that one. Or the Avonex once weekly in the muscle, not too sure of that, the needles are like two inches  long and would probably go right through my arm.  Finally, he brought up a new study being done using  one of three doses of fingolimod or a placebo. With three doses, I'd have a 75% chance of being on it. The great thing about it is that it is a pill. I was kind of - actually very- interested. And as it was the second study, so they already know all the possible side effects and monitor you very closely.

He gave me an information packet on it and I was excited to get home and research it. Unfortunately, although it is extremely effective, is has some moderate-extreme side effects. You have to be seen pretty often so they can check for melinoma- which so far is usually benign. Upper respritory infections are very common. And as it sequesters your white blood cells in your lymph nodes, you have to be careful about being around sick people. Especially chicken pox. I guess a couple people died, and somehow it involved chicken pox. I had chicken pox so I think I'd be ok.

But reading over the criteria for being accepted into the study I found that they insist you are  post-menopausal or you've been neutered or are on the pill. All of which rule me out.

It sounded so attractive at first. 3 months no drugs- to cleanse the system. Then 6 months of pills. And maybe some extra if they extend the study and you want to take the drug for certain. And you haven't died of herpes.

Knowing I can't take it makes me feel better about not worrying about lots of side effects. Just my liver doesn't seem so bad- which is doing well  by the way. And it was fun to dream for a day or two- I'm a slow reader and there were lots of papers.

So in the end we worked out how I could "stick" with what I'm already on and I guess I'm feeling better about that now. Maybe it was good for me to hear the other options and make me feel like what I've got isn't so bad. I put some cortisone on the itchy spot and I think it may be helping.

I did mention to him a funny feeling I've been getting when I swallow for the past few months and he thought it might be worth while to get a swallow evaluation. So when I got home I scheduled one for later in the week. I figured why not? I'm not choking or anything but it wouldn't hurt. Secretly I hoped they would find my thyroid was not quite right and could give me a pill  and my hair would stop falling out. And I'd get a new pair of shoes just  for  being a good patient.

Well, I did get some applesauce, and yummy diced peaches , and graham crackers. And a skittle that I had to just swallow like a pill so it didn't even matter if I picked the lemon one. Oh, and my thyroid was not the issue. Rats! It seems to be the muscles the right side of my throat.
But she did have some fascinating information for me and I found the diagnostic process interesting too. she gave me a range ot things to eat or drink, with varrying textures and viscosities. After watching me ingest, and feeling my thryoid and all that she had me look out the window while I ate applesause. It felt normal. I looked to my left, still felt strange. I looked down, very odd way to swallow. Still felt strange. She explained it like this: the muscles on the right side are being sluggish. When I turn my head to the right, it pulls and forces the left side to do the work. I thougth it was really cool and was experimenting all through dinner that night. But Shane knew what I was doing so he didn't think I was too weird.

She also explained that both ends of the eating spectrum  are problematic. The crackers, popcorn, etc because of their dry and rough texture. And water, because it slips down too quickly. She said it is because it is tasteless, textureless, and especially if it is room temperature, it sends no signals to the brain to prep it for swallowing. I was really excited. It explained why I could down an entire Snapple Lemon Iced Tea without stopping but felt like I was being drowned if I tried to guzzle 6 oz of water. -It also explained why they put thickeners in everything my mom drank after her stroke. She was so disappointed when she took the lid off her coffee only to find it syrupy. (we snuck down to Starbucks and brought her back some real stuff. She had already had the swallow evaluation and had passed, so it seemed silly to us to make her drink gross coffee, not to mention mean).

So, although it was not the best news, it was educational, and tasty. And now that I know why it feels funny, I'd like to know if the Doctor thinks there is new activity and the Rebif is not working so I can just stop it all together. But after reading these articles, I am inclined to think they might be on the wrong track intirely and why risk more bumps and bruises and possibly liver health , for something that is not adressing the root cause, which it seems they are not entirely sure of. I wish I had read the articles before my appointment. Dr. M is very nice and doesn't act like he thinks I'm crazy when I preface things with "So, I was reading on the internet..." I'd like to think its because I bring up valid and pertinent information that warrants a serious considering.  And not just that he is so nice.

He once told me "It's a really exciting time to have MS!"  I can't say I shared his sentiment completely in the same way. I did like the fact that he was so passionate about his area of expertise. It  does seem like a lot of new puzzle pieces are being discovered lately.  And I do like puzzles. I wouldn't mind some new shoes too.

Black Holes

Ok. Only one black hole. But apparently one is enough for concern.
I had my annual MRI on Friday. The imaging place was super efficient this time and actually had me stop filling out paper work so they could get me in the machine sooner. And the doctors office scheduled us right afterwards so we didn't have the time in between where we usually go out to lunch. But we did get coffee on the way in and had lunch afterwards so it all worked out.

So the bad news. The neuroligst didn't like the look of my scans, but to each his own, I say. Not too much new activity and he thought the areas of activity could have been worse. Most of the spots are in the area of the brain that affect your thinking, as opposed to areas that involve your mobility. So I can walk and talk. I just may not make much sense. not sure which is better. One are has "gone dark" meaning the damage is deep enough to cause fluid build up- the water on the brain he mentioned last year-and it shows up like a black spot on the scans. As he pointed out, clinically I look great- I did get my hair done recently-but he is concerned about any more activity and thinks it is time to change my medication. Which we are not thrilled about. I have been on Copaxone off and on the last 5 years and aside from a daily poke and the build up of scar tissue in various sites- Shane tried to make me feel better by saying "at least you weren't a model and had to give up your career" He has such a way with words. But really, it was not a big deal and as I could take it while nursing, it was not too much of a disruption to how we like to live.
However, the new drug, is an iterferon and does come with some side effects and warnings, possible liver damage, suicidal thoughts, flu like symptoms and a host of other pleasantries. And possibly no alcohol or other things that tax the liver. And you have to get you liver enzymes minitored every three months. I'm not sure if I'm more apprehensive about those or the fact that is made from a human protien which they get from plasma. Human plasma. And I think somehow a chinese monkey ovum might be involved. That last bit sounds funny. But its true. Or at least something close to the truth. As is the name they use for their little injector. Copaxone has one called the "Autoject". Which sounds like what it is. A little spring loaded contraption that shoots the needle into you so you don't have to manually stab yourself. Well we were driving back from lunch and I was reading over the "welcome" package from Rebif and found their version is called, I am not making this up, the "Rebiject". Immediately, Shane and I came up with the various ways we could use the word, like how when I the last one chosen on the soccer field, I felt "rebijected." Don't people think of these things when they make up names? maybe they are just no imaginative enough. I thought Rebif was silly enough. It makes me think of the Narnia books: Reepicheep felt rebijected when he lost his tail. OK maybe its getting silly. But Shane, always looking on the bright side, pointed out we never would have learned the word if we hadn't gotten the packet. I guess I'm not feeling like I have gotten enough mileage from it to tip the scales yet. And I'm not convinced that is the way I'm going to go. There are other interferons, but they are all basically made the same way. One drug site boasted that mad cow has never been found to be transmitted from albium. That does make me feel much safer.
So I told the dr. Id think about it for a few months, take a vacation to Palau with Shane, and get back to him. Or I may choose secret option #4 and come back from vacation pregnant. Then I could put switching drugs on hold until after the new one was weaned. They need to come up with a drug that makes your body act like you are in your third trimester all the time. Minus the burgeoning belly. But if the Rebif is basically morning sickness, might as well get the real protective and natural benefits of being pregnant.
Oh, and on the way home we stopped and I finally found an acceptable bathing suit. But Shane was with me again and as I said, I usually come home with something if he's there. And I discovered, a patterned fabric can hid a multitude of whatevers, whereas a solid is a blank canvas just waiting to show off your evey irregularity. And its a two piece so it could work for maternity wear too.
Thats all our news here. Time to get the kids up and ready for liturgy. Have fun with "rebiject" and let me know what you come up with. We can all always use a laugh.