Results of the Bone Density Scan and Aftermath

Last time I saw the GYN he told me my blood test revealed my ovaries had given up the ghost and were just sorry sacks of freeloading flesh, never to serve another productive day in their pathetic lives. Well, I'm paraphrasing him, but that's basically the gist of it. I have entered menopause.

He gave me a script for Estradiol that is bioidentical (or molecularly identical) to human estrogen. He also had to give me a handout with all the data gleaned from the Women's Health Initiative, a poorly design study in which skewed results were obtained due to many factors, not the least of which being that the median age of their "newly menopausal" subjects happened to be 63!?!

Being the certified hypochondriac that I am, I could not just start popping a pill just because it was prescribed for me without a lot of agonizing over the whole ordeal. I don't suffer from menopausal symptoms to such a degree that my life is disrupted by them. The main issue was going to be with whether or not it was going to help me with bone density.

I have had a LOT of steroids since being diagnosed with MS and I had strong suspicions that my bones were thin. I have other risk factors including being "thin" (that's according to my doc, not my own definition because I think I could stand to lose 10lbs), not eating enough calcium rich foods due to being lactose intolerant, I used to smoke, and I am menopausal.

So I promised myself I would hold off on the estrogen decision until the results of the bone density test came back. That happened this past Tuesday when I went in for my checkup.

The nurse looks through my file when she's preparing to take my vitals and she's the one who broke the news. "You have osteopenia. It's a precursor to osteoporosis. Here's a bunch of pamphlets to read."

Gee. Pretty anticlimactic.

So I'm going to see the doc and he's a real talker. My sister had the appointment slot 1/2 hour previous to mine and they put us in adjacent (not to be confused with adjoining) rooms. The doctor talked and talked. I got so bored waiting for my turn that I decided to go all McGyver and try to hear what was going on by cupping my hands in a circle tightly against the wall and jamming my ear down into my home made water glass and see if I could hear anything. I could.

Not much, mind you. Mostly my sisters responses because a) her voice is louder and b) she was facing the wall.

Having fun with my spy game, I decided to get all scientific about it and stand up, slowly sliding my water-glass-hand-cup along the wall searching for the optimal audio reception, finding that the studs really do hinder the sound quality, and if I went above the counter level I could get even better audio.

Realizing the compromising position I was in, half squatting with my ear plaster to my hand-cup against the wall and between the exam table and the chair they give you so your clothes aren't just thrown on the floor, I decided that I better just chill out and resume a more natural stance in a section of the room the nurse would not be alarmed to find me.

It wasn't like he'd been telling her anything she's have needed to go all HIPPA on me about. They were discussing what foods constituted a balanced diet. Big whoop. But it was something to do and I tend to do stuff that hidden camera people would EAT UP if I think I'm alone.

About the time I got situated back in my chair where I had been told to sit, stay, was about the same time I heard her door open and the doc saying his goodbyes. Then I could hear him and the nurse discussing his next patient (moi) out in the hallway.

"Oh, they're sisters? Really! Cool."

He then came in, not mentioning my sister or any Family Plan Discount Coupon he might have in his wallet, but just shook my hand and got busy reviewing my file.

He talked about osteopenia and how it shouldn't be confused with osteoporosis since that's not what I have. We talked about how I need to take an aggressive proactive stance against it and start making changes that would decrease my odds of ending up with osteoporosis.

He then asked me how the Estradiol was working for me. I told him my plan to hold off starting until I got the results he'd just given me. He said that was a fair decision. (I didn't know I was getting judged on my decision making).

So now that I was presented with the results it was do or die time. We rehashed all the risk factors checking off those which apply to me..

"Used to smoke, don't have high intake of calcium, sedentary lifestyle, you're thin..."

"Woah! What was that? You think I"m thin?? Can I get that in writing on your watermarked letterhead?"

Then we go on to discuss the percentage of body fat that people have and your optimal body fat in order to hover in a safe place farthest from osteoporosis risk (on the low end) and cardiac complications (on the high end). It needs to be between 25 and 30% on the scale.

Then he tells me there are scales which can accurately calculate body fat and body water, and you can purchase them at wal-mart.com among other places. Intrigued I whipped out some scratch paper and a pen and started taking notes.

Simultaneously he whipped out his iPhone and started surfing to find the one I needed to get, were I so inclined. After writing the brand name (Taylor) and that it needed to be digital and say that it measures body fat and body water, I felt my heart skip a beat...

I had a defective iron I had purchased the day before and needed the receipt to take it back for exchange. I was hoping against hope I wasn't scribbling all over the back of it. I flipped it over and for a second I was relieved.

Then I burst out laughing and confessed to the doctor that I was taking notes about the scale on the back of a Dunkin Donuts receipt. He, too, had a good laugh.

So we decided that I would increase my calcium intake to between 1100 and 1500 mg / day (I have a 1200 mg chewable I got from Walgreens that fits the bill), and I would get that scale,  (which I ordered from Wal-mart.com from this ad) , and that I would begin taking the Estradiol as opposed to my inevitable choices I would later be presented with should my bones continue thinning...

Things like Boneva, Fosomax, and other super expensive osteo drugs. I decided I'd give the Estradiol (at $17 for a 1 mo. supply or if I join Walgreens Rx plan I can get it for $4/mo for a 3mo supply) a try. May as well try the cheap route since I'm not made of money last I checked.

That brings us up to date and I am on day 3 of being an estroginated subject.

Here's what I have found.

• 1st day I was a little dizzier than my ususal MS/Fingolimod dizzy.
• I have only gone through 2 nights since starting and already I sleep better with less insomnia, less restless light sleep, more sound sleep and less hot flashes.
• My hips don't hurt as bad. They were stiff and sore all the time but I just figured it was from sitting so much and getting older.

Other than those things I have noticed no difference. My moods stay the same and I don't feel like I have any side effects.

If this helps my menopausal symptoms I had been ignoring (the sleep issues, hot flashes and hip aches) and helps increase my bone density, then I guess I am willing to risk certain minimally possible adverse events.

After all, I'm becoming a pro at this drug taking, weigh the pros and cons stuff. I've had 3 years practice with Fingolimod. :D

Another Year Gone By

I know I have really slacked off on the blogging and for those of you eager to hear news about Fingolimod (now Gilenia) I do apologize.

Just know that "no news is good news" is the phrase du jour . My 3 year mark in the clinical trial was on August 20, 2010 - 12 days ago! It still amazes me that I have come so far and feel safe in saying my MS is in remission.

It took me SO LONG to get over the feeling that if I sneezed too hard or crossed my eyes, I'd send myself into a relapse. But before Fingolimod that was exactly the case. It didn't take much at all, even just a little stress, to send me into the land of numbness, burning, tingling and limbs I had to drag.

So I guess I am trying to ignore the fact that the trial is probably winding down, as is sure to happen. They have to wrap this up sometime and with the pending FDA review, I have tried to ignore the fact that I will soon have to figure out how to stay on this medication and maintain my good health.

It's crossed my mind on more than one occasion that maybe all the success I have had isn't TOTALLY attributable to FTY720 alone, but was partly brought about by quitting smoking and caffeine, and trying to make better food choices. This is a comforting idea to ponder because in my little pea brain it suggests that I have a fighting chance of staying in remission even without my drugs.

I think that keeping a positive attitude and having a new outlet for my creative energies has also helped to keep me stable. I just can't get enough of the tie-dyeing that my sister and I have started doing/selling. It's been a joy to have something so satisfyingly artistic to do after years of feeling frustrated that MS had taken my finest motor skills so that I no longer can do really detailed pen and ink drawings.

Tie-dye IS an artform, by gosh! And unlike drawings I may have started and got bored with or frustrated by, none of the tie-dye stuff sits around unfinished. I do them beginning to end with the untying being the most exciting part. It feels like Christmas morning every single time. Love to see the surprising designs of colors and patterns.

It's that exhilaration that keeps us doing it, and the fact that it keeps my mind from stagnating in a MS pondering funk is a great big plus. SELLING something would make me even more ecstatic but I guess that's too much to ask for ROFL.

I have another BIG clinical trial checkup coming soon but oddly I have not heard from my trial nurse in a while. Usually she calls a couple weeks before the appt. to confirm. For the past couple "anniversary" appointments, it's always been a big deal, with every single test performed from PFT to MRI -- all having to be completed within so many days (14 or 30 maybe?) of the anniversary date (8/20).

Counting my pills, I see I have 23 left and I already took today's, so I'm good for a few weeks anyhow.

Until then, I'll keep pretending to be normal and  revel in my new found creative outlet. Hopefully I'll have a more MS-y, clinical trial-ish post for you soon.

The Psychological Impact of Multiple Sclerosis

A friend shared this info with me and I thought I should post it.

From the Cleveland Clinic Online Health Chats:

The Pschological Impact of Multiple Sclerosis
Wednesday, August 18, 2010 - 12 Noon (Eastern Time)

Do you have Multiple Sclerosis and find yourself depressed because of the challenges it presents? You are not alone. Up to half of all people who suffer from Multiple Sclerosis also show signs of being depressed, or having psychological problems, at some point during their illness.

To read the whole announcement, click here.

I know I have had low periods during the course of my illness and I am fortunate enough to have not suffered much if any disability. And they don't mention it in the announcement, but MS itself can be a direct cause of psychological problems, I believe.

I once had a relapse in where I suffered severe panic attacks about 5 times a week. A couple of them were so severe that I actually went to the ER thinking I was having a heart attack. Of course I walked out before I was ever seen or called because they wore off within 30 minutes, but I finally had to be put on a low dose of Xanax to be taken as needed for the 3 months that relapse lasted. After that, the panic attacks just faded away and I haven't had one now in 3 years. (knocking wood)

So I know that even if there is little emotional impact from your condition and that you might be handling it well, you could still fall victim to depression simply from your medication or your MS itself.

Have hope! There is light at the end of the tunnel and NO it's not always a train. Seek help and quit suffering. Things CAN be better. I'm living proof. 3 years ago I was suicidal and saw nothing to look forward to when I was relapsing every 3 months. Then I got in this study and my life was turned around. I look back now and I'm so glad I didn't let that depression swallow me whole and do something stupid.

So go check out the chat. Maybe you or the one you love can find some bit of something to take away from it.

TieDyedHippy.com new shirts preview #1

I know this seems like it's totally out of left field, but my sister and I started a website selling tie dyed stuff called "www.tiedyedhippy.com" and here's a video preview of some stuff that will be listed tomorrow.

It's all one of a kind, unique designs that we probably won't remember how we did it so you are safe in knowing there will never be another just like yours.

I'm hippy #1 in the video and my sister is hippy #2 who can't hold a camera and laugh at the same time.

She came over today (that's the back porch of my mom's house where I am living now) and we showed each other our new stuff and decided to run out back and shoot a video. Getting each product photo shot and prepared for the website takes time and we are like a couple of kids who can't wait for that stuff, so the Video Preview is something we will be doing regularly to show off what's coming soon.

I'll be making a blog for www.TieDyedHippy.com shortly and when I do I will put a link here for those who'd like to follow along. That way I can keep my fingo drug habit blog separate from my hippy tie dyeing adventures. :) I did just want to share with you guys first tho.

So I'm just getting old??

For the past 3 weeks I have been poked, prodded, scrutinized, observed, jabbed, grabbed and lit up like a Christmas tree. And now I find out that all my problems could quite possibly be caused by my ovaries ceasing to function. Otherwise known as menopause.

Huh. I'd have never have guessed that.

I had a hysterectomy 11 years ago so that's why I had no *clue* if you know what I mean.

After the CT and pelvic ultrasound and all the blood work turned up nothing unusual, I returned to see my GYN and it's his opinion that the discomfort and quite possibly the buzzing could be caused by my lack of estrogen. He knows for certain that my ovaries have stopped working by the results of the blood work.

Everything else that all these doctors have tested for have turned up normal.

The first thing I did was to go home and cancel my colonoscopy. After meeting with the doctor who was supposed to have performed it and getting his opinion that, after viewing the results of my pelvic CT, he didn't expect to find anything unusual on the colonoscopy, I just decided to give myself a break.

They told me I can call to reschedule at any time and I promised myself I would, but I'm just sick of all the cold metal tables and the backless gowns. If I'm never going to again wear a backless gown that's covered with sequins an has matching shoes, than I'm not going to wear one that's one size fits all and still shows my butt. At least not right away.

If the buzzing were getting worse or there was more pain, then maybe, but right now I just want to relax and start taking the Estradial and see if it helps.

The GYN had a long talk with me about the Women's Health Initiative study clinical trial results about hormone replacement therapy and the big scare it gave all women in 2002 when the news had it plastered all over the place that HRT causes breast cancer and increases your chance of heart attack.

We discussed how the study which was supposed to measure the benefits of HRT in NEWLY menopausal women was fundamentally flawed because they selected women who were of the average age of 63 -- an age quite well past "newly" menopausal.

He gave me some literature and told me to go home and research it on the internet. Apparently he hasn't gotten the memo. All my other doctors have each, at one time or another, rolled their eyes, expelled heavy sighs, and told me to "PLEASE, stay OFF the internet, would you?!"

I've been doing very well this time around though. I think I really have learned some lessons about late night frantic, fear-driven searches for answers to the worst possible hypothetical questions. I just am burnt out on that kind of stress and didn't even bother this time.

That said, ovarian cancer had been rolling around my mind the past couple of weeks but I was good, and didn't Google the symptoms.

Because I already know that ovarian cancer, unless it's in late stages, doesn't really have any symptoms (or so I vaguely think I remember from reading about Gilda Radner a long time ago). So the buzz and the pressure/soreness symptoms didn't scare me into thinking it would be a close match.

So, here, on the eve of my 11 year old's 12th birthday, only 3 months shy of the 12th anniversary of my hysterectomy surgery, I sit contemplating on how age is catching up to me no matter how young my mind still insists on acting.

Who'd have thought a little estrogen might fix all my complaints? Doc asked if I'd been having hot flashes (check), night sweats (check), mood swings (check), achy joints (check), trouble sleeping (check)...

I think I'm going to start the Estradial. It can't hurt to try it for a couple months and see if it helps. I may feel a lot better or maybe nothing will change. For $4 a month (full Rx price with no insurance) I can find out.

If only Fingo were going to be that cheap...

An interesting survey

I know a lot of my readers are MSers and quite a few of you may also be members of www.patientslikeme.com. If so, did you get the invitation to participate in a survey recently?

It was a survey titled "If you could choose the packaging for a pill for MS, would it look like this?" Normally I am hit or miss on the surveys I take. It depends on my mood. Sometimes I have even been know to delete emails from places like that without even reading them if I haven't weeded my email account garden lately and I'm going nuts trying to spruce it back into shape. I might have 100 unread emails and if they look spamy in the least, they're history.

Why I chose to open this email and respond before I even saw the title, I can only attribute to serendipity.

As I suspected, once I started the survey it was instantly clear to me that the medication in question was Gilenia, Fingolimod, FTY720, that Chinese fungus, whatever you want to call it.

There were 3 videos included showing 3 prospective packaging ideas.

The first one appears to be some contraption that is made of plastic, has windows where you can view your medication packets that are blister packed inside. You slide the guts out, push your pill through the blister pack, slide the guts back in, and tilt the whole contraption so that the pill "dispenses" into your hand.

The days of the week are clearly marked beside each pill so you can easily see which pill you need to take next and if you already took the one for today or not. Kind of like it comes in it's own pill minder box or something.

Now, I had copied all the questions and my essay type answers to a notepad file but got distracted by something before saving it. Then I forgot about it and went to bed. This morning I wake up to find my computer had rebooted after installing updates (I thought I had changed that setting! Doh!) and so I lost all my witty answers and their respective questions.

I did save a file that had the urls of all their youtube videos that they used in the survey. I am not sure what the ramifications would be if I shared them here as they were not shared on youtube.com. Erring on the side of caution, I'll just describe their use as I witnessed in the video.

The next prospective package looks like samples you might get at a doctor's office. The package initially looks like a little cardboard "book" and you open it up to reveal your pills -- all marked with the days of the week -- embedded in the book in a blister pack. You open it all up, find the correct day, push the pill through the blister and it falls into your hand underneath. You fold the book back up and slide the whole thing into another cardboard sleeve much like VCR tapes used to come in.

This one looks like a huge waste of paper to me.

The last one looks like any other capsule type medication you might buy like say Benadryl. Open the box, slide out the cardboard card with blisters on it, push the pill through the aluminum foil backing. Still, in my opinion, too much packaging.

What I told them in the area they gave me for comments on the survey is that I have been in this study for 3 years now and have only missed a grand total of 3 pills due to not planning ahead and being in the wrong place at pill time (all 3 times I was 30 min or more away from my pills).

I do not need a pharmaceutical company to tell me what day it is or when to take my pill. I can get a pill minder for that for just a couple bucks at CVS or Walgreens. No doubt it will cost much less that way than having my pills already come in some kind of pill minder.

I also told them I had taken Copaxone for 8 years prior to getting into the study and that stuff doesn't come all labeled with the days of the week.

I guess they mean well, but it's my impression that they are going to go with some type of outrageous packaging in order to justify the cost of what they're planning on gouging us for. If they are really concerned about the compromised dexterity of some MSers then perhaps the final choice with just the simple foil back blister pack might be the way to go. But really, anyone with problems getting their pills out of a bottle already has devised a way to do this for all their other medications, haven't they? Why special (read: costly) packaging for Gilenia?

They wanted to know my impression on how child-proof the packaging was at the same time, how easy it was to dispense for the intended patient.

What I want to know is WHY are they trying to reinvent the wheel, or in this case, the bottle?? See that bottle at the top left of this screen? That's what my medicine has always come in since starting this trial. They are not worried about impressing me with its looks at this point, so I imagine I'm actually receiving the pills in the most cost effect container at this time. It has a childproof cap.

Voila! Stick your label on it and call it a day.

I think most of us who have to take other things on a daily basis such as our multivitamin or prescription drugs will be able to figure out how to remember to take our pill every day. Please leave the cost of the hand holding out of the equation.

What we really need, that you didn't bother to ask, is to give input on how much we can afford to pay for this new medicine. Why didn't you ask about that, Novartis?

Keep your fancy Pez dispenser and just give me some pills I can afford. Thanks.

Nothing to report yet...

I've just been poked and prodded more and more.

I went to the consultation with the GI guy who's going to do the colonoscopy and he seemed confident after a preliminary exam that my test was going to reveal nothing profound.

Then I went on Monday and had an abdominal ultrasound. She spent quite a bit of time trying to isolate my right ovary for imaging and it was pretty uncomfortable. Of course she kept that poker face that all techs have to have and I didn't even bother asking if she saw anything. I knew the answer would be "I'm not allowed to say".

In any event, getting my digestive system "regular" again seems to have helped with the symptoms although I still get that fluttering nerve tingling "wack-your-funny-bone" feeling in my lower right abdomen so who knows. By the time they figure it out I'll either be back to normal or really ill.

I have let it go though. I'm no longer stressing over it. I just can't drain myself with worry that way. I think when you do that it only complicates things and increases any pain you might already be enduring.

When I get stressed my stomach knots up. My stomach already is uncomfortable so screw stress.

Now, when I find myself dwelling on all of this in an unhealthy way, I focus on my son and we do something fun together. Hey, if I can't fix what's wrong then doing something fun to pass the time is better than sitting in the dark and worrying. Either way the time is going to pass. May as well have a memory to show for it.

So I've been going to the beach a lot. I had forgotten how calming and soothing the sound of the gentle surf can be. And the cawing of the seagulls as they circle overhead. The sun is not exactly my friend, but we go early enough that it's still relatively cool out and the ocean is warm as bath water. We live on the side of Florida that is almost as far from the Gulf oil spill as you can get -- the NE coast. Even though it was reported that tar balls were found on the beach the other day (and ruled out as far as being from the BP spill) we found the beaches to be pristine sugar sand that felt luxurious on our feet.

Any stress I might have felt before just melts away with the sun, the surf and the gentle breeze in my hair.

And it's nice to see my son with a smile on his face, and no electronics were used in the creation of his happiness.

I'm thinking I get more from the beach than I've been getting from the doctors. At least I come away with less stress than more. :)