Friday, July 29, 2011

Where Did They Go?

I went to see Mr. Happy Knife the samurai swordsman at the beginning of this month in order to discuss the lump in my left breast and whether or not to excise the "angry tissue" that had been surrounding it after it had been aspirated. He told me it was my call to do the biopsy or wait and do another diagnostic mammo in 3 months.

I went with the least immediately painful route and will be having my mammo in October sometime.

Meanwhile, 20 days post consultation, I go back to see my GYN who referred me.

Turns out Mr. Happy Knife must be too busy slicing people up to be bothered with little annoyances like dictation. THREE WEEKS and he couldn't say a few words about our meeting? I had to fill in Dr. GYN about what happened.

Dr. GYN decides to do another ultrasound in his office and guess what? He can't find anything. No lumps (not even the new cyst he had seen forming "at ten o'clock" last time I was there), and no more angry tissue.

When I started to get all happy about that he cautioned me that his ultrasound is just a little cheap jobbie do that's not even a late model, so what he's not seeing is not necessarily nothing. (does that make sense?)

He agreed that we can wait on the biopsy since "breast cancers are notoriously slow to grow" so even if we do have something to deal with later, waiting on the mammo won't put me in any jeopardy.

I asked him if there was any way he could get my results from my blood work done at the neuro appointment at Shands Jacksonville a month ago and his honest reply was that I'd probably have better luck getting them directly, but that he'd be glad to try. He said at big places like that the patient becomes a number and when you try to get data from them often times the left hand doesn't know what the right hand is doing, releases get lost, yadda yadda.

Then we got onto discussing the big wheels of health care and Obamacare and how things are going to be changing for the worse soon probably with government meddling in our medical decisions.

I expressed my exasperation at all of it by saying I wish the powers that be would have someone close diagnosed with an incurable, potentially disabling disease so they could know the anxiety of having to deal with health care as an uninsurable person in this country.

His reply was, "Well, while we're wishing, why don't we just wish that NOBODY got these diseases or NEEDED health care? I mean, it's just as possible as what you propose. I'd be out of a job, but we'd all be healthy and happy and I could spend my days sailing."

That's why I love him. He's a glass half full kinda guy.

So I never asked where the cysts went to when they went away or how that happens; I'm just glad to know they are gone.

Wednesday, July 20, 2011

What a Difference a Day (or two) Makes!

I can't say I no longer know where my cane is. It was in the garage and now it's leaning against the wall so I don't have to.

I had a restful sleep last night until my cat wanted out at 3 ayem. I tested out the legs on the way to the front door and then to the bathroom. I hadn't gotten the cane yet, so I was looking down watching my step on the way back to the bedroom. Seems I should have been looking up watching where I was headed. I smacked my left eyebrow right into the door jam. Three foot hole to walk through and I "missed it by THAT much!"

I went back to bed and when I got up for real about 8 o'clock I felt better. Not like I had a hot wet blanket thrown over me holding me to the bed like yesterday. And today was special. My youngest turned into a teenager. No way could I set an example by being a lazy bed potato all day!

When I did walk, my legs weren't noodley but they were much stiffer and hurt. I've been told before that spasticity is the body's way of trying to compensate for weakness. Not sure if that's true, but it sure seemed like the case.

Note: I started this on the 19th but got tired and went to bed without publishing. So while the above was written the day after we ate noodles for dinner, I'm finishing it up on the 20th and posting . Just in case you've been following along and wonder where a day disappeared to.

So Tuesday was my son's 13th birthday. That's why I got out of bed. But by the time I was ready to go to town and take him present shopping I wasn't so sure my legs wanted to go for the ride. I couldn't very well leave them in bed, so my son went and found my cane and we were off.

Since he already knew he wanted a new Xbox 360 game, shopping for the present was a breeze. In and out in under 15 min.

Then it was off to Publix for the much needed toilet paper and all the other stuff on my list.

Being the procrastinator that I am, I didn't even yet have a card for him so I said "This is awkward. Um, I need to get you a card but you are with me. What do I do??"

Only someone who has sprung forth from these loins could have come up with his response...

"Let's go read all the cards and you show me all the funny ones and tell me you love me. Then we'll put them back and you can save your money, Mom. "

I love that kid!

So we spent some time laughing on the card aisle and then we moved on to the bakery where we chose his dessert for the occasion. We decided not to go with a traditional birthday cake since several members of the extended family are either about to return from or head off to one vacation or another and it would just be the four of us for his actual day-of-his-birthday dinner. We'd save the cake for when everyone could come some weekend in the near future. For now he selected Lemon Meringue. mmmmm

Birthday dinner was Papa John's pizza. I was so grateful not to have to spend time standing in front of the stove. It didn't even matter to me that pizza doesn't really like my lactose intolerant digestive tract (I'd deal with that later).  For now I didn't have to do any weight bearing exercise in the kitchen.

All in all it was a nice day and I didn't really use the cane that much. It got me into the grocery store and back out again but that's about it. I was toting it around for those "just in case" moments.

Much the same way it never rains when my umbrella is with me in the car, I didn't really need the cane.

Two days out now and feeling back to normal. I have no idea what my deal was the day I had to spend in bed. Who knows?

Tuesday, July 19, 2011

Irony Defined

I had a reader send me an email (thanks Liz) to tell me she thought I was "insightful".

Irony, it turns out, is when one who is told they are insightful has to google the definition of the word to see exactly how that applies:

in·sight  [in-sahyt]

1. an instance of apprehending the true nature of a thing, especially through intuitive understanding: an insight into 18th-century life.
2. penetrating mental vision or discernment; faculty of seeing into inner character or underlying truth.
3. Psychology .
    a. an understanding of relationships that sheds light on or helps solve a problem.
    b. (in psychotherapy) the recognition of sources of emotional difficulty.
    c. an understanding of the motivational forces behind one's actions, thoughts, or 
        behavior; self-knowledge.

Monday, July 18, 2011

Noodle legs, noodle dinner

Not sure what's going on but I woke up at 3a.m. this morning as usual to let my kitty outside and (as usual) I couldn't get back to sleep. When I did manage to doze off after channel surfing and wasting time on Facebook, I didn't awaken until 10a.m.

I immediately went to take my 9a.m. Gilenya dose and realized I was incredibly tired and headed back to bed.

I got up a bunch of times to use the bathroom but that was it. Oh, and I had a bowl of Great Graines with Silk soy milk on it before drifting off again.

It wasn't a constant slumber but more of a "maybe I'll get up, but on second thought, nah" type of thing with one leg hanging off the bed as if to make a half-hearted effort toward responsibility.

This is so NOT like me. So much so that my mother insisted I take my temperature which ended up being the only perfectly normal thing about me. At one point, when I did manage to make it all the way into the living room to announce that the shopping trip I'd planned for necessities was called off due to fatigue and tired legs, I caught her snooping in her Dr. Koop's handbook for the chronically hypochondriacal (is that even a word?).

She let out a hoot and just about shot straight up out of her easy chair when she realized she'd been busted, and then confessed there was nothing under "tired" in the index. I suggested "fatigue" which quickly resulted in a questionnaire of 50 "bigger than a breadbox" type of questions.

No, I don't have the worst headache of my life.
No, I don't have hives.
No, I'm not sick to my stomach.

I'm not depressed, I'm not seeing spots upon standing, I'm not having trouble breathing, I'm not any more forgetful or dizzy than...what?? usual??

That's when Mom slammed the book shut and lifted her head to look down through her bifocals at me and said "Do you suppose it could be your MS?"

What??? Nooooo!!

Well, huh. Now that you mention it, maybe?

It's weird that it's been so long since I had a documented relapse that I have forgotten how they start. Usually it's numbness as far as I can recollect, but this fatigue is almost debilitating and I can't come up with any other excuse for it.

I mean we are totally OUT of toilet paper yet I cannot drag my noodley tired legs as far as the car to get me 5 miles down the road to the land of Charmin. We are suffering through this, the whole family and I, by rationing out Kleenex until I feel I can make the trip sometime tomorrow.

We didn't even have any decent left-overage built up in the fridge to fall back on for dinner and all I could find in the pantry that I could make for dinner in 10 minutes or less was Ramen Noodles.

The fatigue is oppressive and my legs have to be either locked stiffly or if I'm not leaning on something they'll surely buckle. Horizontal and not fighting gravity seems the best position for me today so why fight it? Other than the fact that basic cable is pure torture, it was an uneventful, lazy day spent almost entirely in bed.

The true test of whether it's MS related for me or not will be when I wake up tomorrow. If I feel the same way then something's going on. Usually, since starting G 4 years ago, I have discovered a good night's sleep cures just about all the symptoms I may attribute to MS creeping back up on me.

Hopefully we'll be wiping with a handful of fluffy pure cloud-like TP tomorrow and eating a meal with meat and veggies. It sucks to be the one everyone depends on sometimes...

Today SHOULD have been spent planning my son's big birthday tomorrow. He'll be turning 13 and I don't even have a cake for him yet. Doh!

Sunday, July 17, 2011

Reality Check... one ... two

When I was diagnosed with MS way back at the start of 1999, I don't remember if I even had a computer and I'm sure I didn't have any internet connection. The only contact I had with anyone else with MS was a lady nearly 20 years my senior who had been in the clinical trials for Copaxone and had only ever had one relapse since her diagnosis. She had been diagnosed in the late 80's. My mom knew her casually from work.

I got her number and spoke to her on the phone. She used to work at the local hospital and when I lamented that there wasn't even a local MS support group, she took that and ran with it. She organized a group that has now been going strong for over a decade.

I feel really bad that I was the catalyst yet only ever attended 2 meetings.

I was scared and depressed to meet others who were worse off than I and had progressed to Canadian crutches, walkers or wheelchairs. As nice as these people all were, I wasn't ready to put myself in the same boat with them. I was still in denial that I even had MS.

Several years went by and the only real contact I had with others who had MS was to read stories in the MS periodicals like Momentum. Again, most of the people who were profiled were those with obvious mobility issues.

Right or wrong, that scared me. I was running from my diagnosis even though I knew there was no escaping the disease.

I don't know when it happened but somewhere along the way I moved into the 21st century and got a computer and connected to the internet. I became immersed and obsessed with absorbing as much information (and misinformation) as I could from this new portal to the world.

I no longer felt isolated. It gave me hope along with all the information and provided me with the much needed contact with others suffering the same condition. Even though none of us had the answers, it was comforting to know I  was not alone.

I was a member of many different forums when I got into this clinical trial. That's when I discovered there was a real lack of documented real-life experiences with any kind of clinical trials and I was really apprehensive about diving into it. All I knew was that clinical trials are where they decide if a medicine is safe enough to give to the general public. That's scary stuff for a hypochondriac to wrap her brain around.

So this blog was born. The original goal was to document everything from a first hand patient perspective and show others what I went through so they might get an idea of what to expect and not be so scared.  "If I can do it, you can do it", was the message I was trying to convey.

During the course of writing this blog I have met many others like myself. Fellow MSers, fellow bloggers, fellow online sellers. My circles have grown large and often overlap.

Add in Facebook and Twitter and IMing and webinars and chat sessions and I am more social than I ever was prior to having a computer. And I am never bored.

But I was thinking earlier in the shower (where I get great blog post ideas only to have them run out of my ear and down the drain before I can commit them to memory long enough to make it to the keyboard) about what constitutes "friendship" and who are our "friends".

There's an awful lot of people on Facebook who have hundreds of "friends" and I'm suspicious that they might not even have a clue who these people are. They are only "friends" in order to use them as slave laborers on their virtual farms where they invest lots of real time on their imaginary crops.

But when I stop to consider those whom I would define as my real friends, I am shocked to realize most of them are people I've never met in person or even spoken with on the phone.

"In real life" (a/k/a IRL) is an expression borne from the need to differentiate between those people and situations we experience face to face and those which occur via our electronic interface with the rest of the world.

I have exactly one person who is a friend "IRL". Others, such as my partner in the web design business, I consider to be so close that I would trust them with my life.... yet I have never seen their face.

How odd is that?? You might *know* everything about me and have an image in your head of who I am, but pass me at the grocery store and we might bump carts and exchange apologies not even realizing we know the names of each others pets.

Why is it that if not IRL somehow the connection we have made with another is less worthy of consideration as an actual friendship? I am RICH in online friends, and were it possible I would want to meet each and every one of you. Of course then we'd know for certain if we could ever actually be friends. You can't hide who you really are for all that long. I choose not to hide it because it's so much easier that way.

But we are all comfortably insulated from one another here in cyber space. Sharing only what we want. I am so very thankful I have a computer and can connect to you all. I don't think I would be nearly as happy without my online friendships I have forged over the years and that's real enough for me.

Those of you old enough to relate... remember Romper Room? And the lady with the looking glass coming toward the camera saying "I see Kevin and Jenny and Becky and..."?? That's what the internet feels like to me. The strange new world of the 2 way TV.

I don't even know when it happened that news shows started asking us to join in the conversation. The world is getting smaller and smaller every day...

And all you cyber friends out there, I feel closer to you than you will ever know. Thanks for being my friend... or "friending" me or whatever. Because as far as I'm concerned, this IS real life. :)

Saturday, July 16, 2011

What Is Your MS Motto?

I was presented with  this question the other day and immediately the response that jumped to mind was a line from a really corny movie Tim Allen starred in called "Galaxy Quest" back in the late 90's.

"Never give up; never surrender!"

But as corny as it sounds, as cliche as it is, I guess it really is what I try to live by.

I mean, if someone admits to having an MS Motto you've got to expect what follows to be pure corn. Who has a motto anyhow?

So now I've admitted that I have adopted this one, so I better make sure it's got food and water and I walk it every day and play with it and get it all its shots...

I never was very good with nurturing stuff. My oldest son accused me once of "trolling for victims" when I was browsing the garden section at Wal-mart. It's a miracle my 2 kids have survived past the needy diaper stage, but somehow they did.

And now I'm 50 and I have a motto.

So, to all you MSers out there who need encouragement, all kidding aside, never give up, never surrender.

It was only 4 years ago that I got into the TRANSFORMS trial in Jacksonville FL for what we've come to know as Gilenya (but it will forever hold a place in my heart as Fingolimod). In the years and months leading up to this leap of faith into the lifestyle of the lab rat, I had some desperate moments.

My granddaughter once saw me in my bathrobe when she was quite tiny and not the master of the English language that she is now at the ripe old age of nearly 9. Instead of asking if I had just woken up, she asked "Did you just come from the darkest part of your day?"

I've never forgotten that and back before the trial it seemed like all the parts of my days were the darkest. I didn't see any glimpse of hope in any ray of sunshine peeking over the horizon. I was relapsing all the time. I'd get hit by one wave of attacks and slowly start to gradually recover when BOOM! I'd be hit by a new attack all over again. I never got a chance to  relax and calm down and catch my breath. Every day seemed a struggle that kept my anxiety level on *overload* worrying what was going to come next. I daydreamed about what might be the least painful way out.

I look back on that period in my life, from 2005 to 2007, and I really think if I hadn't been such a chicken and scared of death, I may have done something drastic and ended it all. I was mentally and physically worn out from just existing. My son was 7 in 2005 and he needed  me. That, I think, was a big part of why I kept going.

Now, 4 years after starting the trial, without a single relapse since my first taste of Gilenya, I look back and realize what all I would have missed out on if I had given in and given up. My son will be 13 next week, we've moved in with my elderly mother to help her out (I resist saying "take care of her" because she's fiercely independent), and I've gotten to see my granddaughter blossom.

No, I haven't used the time to do anything especially wonderful with myself. My greatest donation to mankind, I think, is that I agreed to be part of this trial. If not for all the desperate MSers out there at our wit's end looking for something that would work to slow this monstrous disease, there might not be a pill on the market. Being part of that felt good.

So if you are reading this and ready to call it quits, please be a procrastinator like I was. I was in an awful place then, but THINGS DO CHANGE. I am living proof.

I had 2 canes and a walker I relied on back then. I don't even know where they are now.

Now, I'm not touting "G" to be a miracle cure or anything remotely like that. Heck, there might even be hideous long-term side effects I have yet to realize. But just getting to the fork in the road where, if I go one way there's a bullet with my name on it, and if I go the other there might be more forks, more choices, more hope. That's all that Gilenya gave me. I took that path and have now enjoyed 4 more years of paths and forks and choices.

Whatever your fork path choices are, choose to try something new before you take the Dead End.

Things can get better. Reach out to someone who will lend an ear - post a comment right here if you like -- but don't give up hope because research in MS is moving at the speed of light. Your  magic bean might be right around the corner.

This didn't start out as a motivational speech trying to save the suicidal among us, but it wasn't until I started typing that I was taken back to that time and reminded of how desperate I felt. I know I'm not alone, and feel a sort of responsibility to hold my hands out to help catch the others who are about to fall down and give up.

So, in 5 words or less, try my motto on for size...

Never Give Up, Never Surrender!


P.S. It sort of creeps me out how this post evolved since it's not my usual style. I do believe that all things happen for a reason. I just KNOW someone out there who reads this needed to hear this at this exact time in their life. For that reason, I'm letting it stand as is. No trashing the post for the excessive corn content. :)

If you know me and read me often, I'll get back to the meaningless drivel promptly, I promise.

Thursday, July 14, 2011

This is only a test...

The only way I will be able to maintain spreading the word is through tools like that will auto tweet and FB anything I blog. I just set it up and am testing it out, so disregard this post unless you, too, feel compelled to let some gadget spread around your bidness.

Now if I could just find a way to *think-blog* and be done with it all I could be laying on the beach and come up with some fantastic idea for a post and poof! it would be here already.

Consultation with the Samurai Swordsman

This is a follow up post to the lump found in this post (well the lump's not IN the  post but you know what I mean.)

I should have known when my referring physician couldn't remember the surgeon's last name for a few seconds and got embarrassed saying "His first name is Jeremy and his last name escapes me. Sorry, this is really unprofessional," that he was going to be a young knife happy guy.

In all fairness, Dr. Jeremy was a very professional, thorough and seemingly knowledgeable Doogie Howser kind of guy who looked to be anywhere from 18 - 30 and I bet he gets carded every time he wants to go out for a beer after a long day of cutting stuff off of/out of people.

He looked my chart over and asked lots of questions about my medical history along with the whole family tree's. Then he did a breast exam and really gave me a good once over - twice. He said the same thing my GYN, (Dr. Darryl if we want to stick with the first name thing), had said which was that breast cancer normally is not painful so the pain is a good sign.

He then sat me down, (or up, actually since I'd just been laying down) and told me I had 2 options.

1. I could do a biopsy to remove all of the tissue in question. He would send me for a mammo where the radiologist would "insert a wire" into the exact area so there would be no doubt as to what was to be removed. Then it would be done at the hospital as an outpatient procedure.

I asked if I could have local anesthetic. I really don't want general since I have not had any surgery since my MS diagnosis nearly 13 years ago and I don't want to be throwing anything new into the mix. He said I could have local. First the anesthesiologist would give me something to put me in a twilight type sleep and then they would numb me up and go in. He said it's the same stuff they use on colonoscopies. I winced since I've had one of those and did NOT like that stuff at all. I talked the whole way home from the procedure and said God knows what on the 1/2 hour drive only to ask my sister if I had slept the whole way because I had no recollection of the trip.


2. Wait 3 months and redo the mammogram to see if the inflamed tissue has returned to normal. He said that after reading the radiology and cystology reports he felt comfortable telling me that he didn't believe waiting would be a bad thing or that anything might happen during that time if I opted for the mammo over biopsy.

He just said that with the biopsy we would once and for all know what we were dealing with and there would be no conjecture.

So naturally I chose what any red-blooded American hypochondriac scaredy pants would choose.

My mammo is scheduled for some time in October.

Can We Eat To Starve Cancer?

A friend of mine shared this link in a comment on one of my blog posts and I was so interested in this video that I thought I should share it here for everyone to see...

Mr. Li makes some fascinating points and the things he suggests about diet sure can't hurt you to try.

The Neuro Visit That Almost Wasn't

With all of the other medical issues going on I decided to take advantage of the fact that my Medically Needy Share of Cost had been met and try to get an appointment with my new neuro, Dr. Silliman, at Shands Jacksonville Neurology Department. He had been the lead investigator in my TRANSFORMS clinical trial and was very familiar with me.

I didn't have a neuro outside the study (long story; last neuro had a stroke) and I had sort of been leaning on the trial to do all the neuro-esque stuff to me and catch anything that needed catching. In the trial I was poked and prodded and tested to the brink of insanity every three months.

It had now been 5 months since the study completed on Jan. 20, 2011.

So I called a couple weeks ago and got the person in charge of scheduling. She says "can you come at 3:20pm on June 23rd? It's the ONLY appointment he's got left for this month." And my answer is "of COURSE I'll be there! Put me down for it."

So I plan my trip accordingly. It's a 1.5 - 2 hr. drive to get there depending on how you go (I take the long scenic SLOW route as opposed to I-95 which scares me to death.) and I made sure to work in a planned stop to JoAnne's Fabric store so I could feed my new addiction - sewing clothes for my granddaughter. I also planned to stop for something to eat at Crispers which was on the way and has really tasty soups and sandwiches. (I had the Citrus Chicken Wrap <-- totally awesome!).

I spent the morning coloring my hair so I didn't have to wear my "Please don't feed the Skunk Woman" shirt, and I was out of the house right on time at 1:15.
Geeze, I started this post quite a while ago (June 25th and it's now July 14th) and probably don't remember what all happened now to finish it. I need to stop starting stuff and not finishing it! I bet I'm ADD (but there I go on another tangent.... oo! a butterfly!.... what was I saying?)
Anyhoo, to get to the point (was there one other than the main one about what I ate for lunch?) I get there and was signing in and they are looking at me all curious like from behind the counter. I notice the waiting room is empty. It's 3:15 in the afternoon. I ask which sheet is the one to sign in on for Dr. Silliman since there is a whole line of clipboards on the counter.

The ladies exchange glances that tell me they are bracing for the Angry Patient Response that they both know is coming. She asks for my name and tells me to come sit at the chair in front of her desk like letting me sit in the comfy chair will make what she's about to tell me all better.

I sit down and she starts clackity clacking on the keyboard doing stuff with that number pad over on the right that I never ever use. I hate when they do that because I can't figure out what they're up to. Then she stops suddenly and said, "You were bumped."

I say "Huh? Nobody told ME!"

She said "They didn't call you?"


"Is your contact phone blah blah blah?"

"YES! And I didn't get a call"

"Hmmmm" (long awkward pause).

Me: "Look, I just drove for 2 hours to get here and I'm not leaving until someone sees me. I was told this was his last slot for the month and my share of cost is met and it's the end of the month practically so I guess you need to find another neuro who can squeeze me in."

(she makes that "eeesh" face, upside down smile thing with open mouth that suggests that might not be too easy)

"See, he had his schedule cleared for this afternoon because graduation is today." (I keep forgetting it's  a teaching hospital).

"Yeah, well that's fine but it would have been nice to KNOW 2 hours ago before I wasted my day and thirty bucks in gas."

I sat down again (having stood up when I became irate) and said "I'll wait here until you get something figured out because I'm not leaving until I see a neuro."

She left and came back about 15 min later telling me Dr. Nameaslongasyourarm would see me and whisked me away down a maze of hallways that ended up looking awfully familiar. The spot I ended up in was one of the exam rooms over on the Research side where I always went during the trial. I was "home" and immediately felt comfortable.

I saw a guy in a white lab coat who seemed a little unsure of stuff I was telling him. I was guessing it was due to the fact that I'd been on Gilenya for nearly 4 years while it's only been approved since last September. I was thinking maybe the doctors who weren't involved in the study aren't as well versed in the stuff. Either that or they put a lab coat on the janitor and told him to wing it. Turns out the truth was somewhere in the middle. He was a resident. When he brought up my MRIs on the computer and had my initial one from the study side by side with the latest one from Jan 2011, I started asking questions he couldn't answer. Then he starts whapping me with that rubber mallet and when he hit my left knee I kicked him.

I didn't meant to kick him, but shouldn't a neuro who is examining an MS patient have sense enough to stand to the side when testing their reflexes?? He abruptly left the room. Wow. What a wuss. I only kicked him in the shin. It wasn't like I nailed him in the privates or something.

He returns with another guy in a lab coat who seems a whole heck of a lot more at ease with himself and confident. He shakes my hand and introduces himself as Dr. Somebodyelsewhosenameiforget. He takes the mallet from the first guy and gives me a whack. Immediately I could tell he knew what he was doing. He stood off to the side as my leg flew up as if to launch the winning field goal.

He turns to the janitor and says "You're right! Her reflexes ARE brisk!"

Then he taps me all over, watches me walk, and looks in my eyes. This is when he said "I see some optic pallor more prominent in the right eye than left."

Whoa! Back the truck up! I have never had an MS related issue with my eyes so the way he said it, like it should be no surprise, surprised me.

Of course I had to come home and google it. I'm not buying what he's selling though because none of the real eye exams by the neuro ophthalmologist ever revealed any issues whatsoever, so this guy with a pen light and no dilation drops isn't about to intimidate me. I don't care what he thinks he sees.

Speaking of what he saw, he also looked at my side by side MRI scans and got them to sync so that he could scroll through matching image slices like seeing my brain melt away from the top down and compare things. He stopped at one point to teach the janitor/resident about Black Holes. Apparently I have one. News to me.

A Black Hole is where MS has done so much damage that not only is all the myelin all gone but so are the axons it was meant to protect. Total nerve annihilation. He did say that it was so small I probably didn't even have any noticeable symptoms from it.

They did a blood draw after my prompting and a little researching on their smart phones once I mentioned that in the trial they did blood work every 3 months especially since there can be elevated liver enzymes. No mention of any eye exam, PFT or any other test that was so common place during the study.

I left there feeling a little less confident about my eyesight and my brain, but decided they may not know what they're talking about. I'll wait until I get to see the neuro I'd intended to see. I was told to make a 3 month follow up with him.

The day after my appointment I got a phone call. It was a courtesy call to let me know I was getting bumped... from my appointment the day before. Duh.