Rounding up the MS Posse

Lisa:

I am having such a hard time lately. I am so upset, not having answers and not knowing how to fix what is broken. I keep thinking that the issues I have are all my fault, that if I would have stopped over-thinking things and worrying that I wouldn't have ever gone through what I am going through. Do you think it's possible that a person can worry themselves to a "probable MS" diagnosis?

In June, Brianna is told she has a "mild case of MS", followed by news of "probable MS". On August 14, Brianna started her very first course of 3-day IVSM and is waiting for answers.

Read "Broken" to catch up on what's going on with Brianna now.

Lisa, what can I do? How can I speed up a diagnosis? Who can I talk to? I feel like even though I have been going through this for 4 months, I haven't made any progress. I think my doctors are just waiting for me to show some other MS sign so they can just give me the diagnosis. Is there nothing else they can do? I just want to know when I will get feeling "back in the saddle."

I know many of you have been exactly where Brianna is now. Probable MS. Frustrated and Scared. Juiced on steroids. Just wanting things back the way they were..... before.

So I ask you to join me in letting Brianna know that SHE IS NOT ALONE.

Repeat After Me....

This too shall pass.  This too shall pass.

So I had a 3-month follow-up appointment with my neuro on Friday, actually the assistant who's a favorite of mine.  We're developing a pretty good working relationship.

She asks, "so how are you doing?"

Me:  I'd like to say great!!!  But I should go ahead and tell you the truth, right?

"What's going on?"

So this is where I tell her that my right leg is in spasm ALOT lately and won't stop.  I try to remember to up the Baclofen, but keep forgetting and it's not really touching it anyway.

The legs are getting more painful and the room has spun around on a few occasions lately.  Like one big "whoosh" in a full circle then stopped.

Bladder/bowel fine.  Eyes okay - new contacts which might be to blame for some blurry moments.  Growing fatigue.  Wobbly but no falls.  Yep, some numbness.  Etc.

She says, "ok, let's check a few things."  Going through the motions here.

"Squeeze my fingers.  Keep going.  Ok.  Uhuh.  You've got some weakness on the right side."

Me:  What?  But it's my left side that gets weak, not my right.  

So we do it again.  "Notice that shaking....."

Shoot.  I hadn't even really noticed, but there is was wobbling and shaking.

Out comes the safety pin.  "How about that?  that?"

I laugh.  Keep going... higher.... oh, finally.  That almost felt kinda sharpish, but still not ouchy.

Wow.  I didn't know my arm was numb all the way to up there.  Or both legs, and the left arm too.  Sigh.

Vibrating tuning fork on the ankle.  Yep, feel it.  Ooo, that felt pretty good.  Do it again.

Push, pull, resist.  Legs, feet, ankles.

"There's some unevenness in strength.  More weakness on the right."

Babinski's.  Negative.

Walk on toes.  I say, "uh, you know this is the really hard one."

Heel to toe.  Yep, that one is always funny lookin'.

Sit back down.  "Yes, I believe you have a little something going on here."

I ask to try an oral taper this time.  You know, just to nip it in the bud.  Not even worth calling it a relapse.  Minor exacerbation sounds better.  

Really almost nothing, but something.

So that's where I am today.  I started the Prednisone taper on Friday afternoon with 60mg.

60mg sounds so innocuous as compared to 1000mg intravenous steroids.  Just a tiny little 60mg.

But today, I'm a walking marshmellow.  I've caught a cold.  My head is ready to explode.

I have very little appetite.  Have fallen asleep (more like passed out) each of the last three days for at least 3 hours each afternoon.  Good thing I don't have any lessons to teach until after Labor Day.

There's a little tiny part of me that wants to cry, but there's absolutely no reason for it and the eyes are not buying into it either.

I'm tired.  I'm feeling more due to less numbness.  And I was actually starting to feel better before the steroid fog rolled in.

So here's to the mantra.  This too shall pass.  That too shall pass.

A Little Self-Promotion Never Really Hurt Anyone

Hello All,

I have had a nice first week over at Multiple Sclerosis Central and am still kinda learning the ropes. Previously, I was unaware of the Question/Answer section of the website but am now intrigued with the mini-forum.

Some questions are easy to answer like this one regarding EMG: What is this and how do they do it?

But some are harder to answer if you simply don't know the answer like this one: How many spinal taps can you get before it causes bodily injury?

I don't know. Do any of you know a good answer for that one?

A cool thing which the folks over there made for me was a widget of my very own. You may notice that I've placed one on the sidebar.

(over there --------->>> and maybe down a little)

You are welcome to grab it to place on your own blog or facebook page, or whatnot. Just follow this link to grab the code:

Lisa Emrich on Multiple Sclerosis Central

Then I experimented and made widgets for Brass and Ivory and the Carnival of MS Bloggers. Feel free to grab them too, if you wish.

So basically, I'm attempting to practice some self-promotion here and would love it if you'd visit me there on occasion to read my SharePosts and those of others touched by MS, personally or professionally.

You might recognize a few topics which seem vaguely familiar to ones previously discussed here. But the important topics always deserve to be revisited, such as these:

Who do you Tell? When and Why? - Part 1 The Inner Realm.

Who do you Tell? When and Why? - Part 2 The Middle Realm

Thank you, my friends, for continuing to read. Here, There, and Over Yonder.

New MS Blog Alert!!

A new MS blog has arrived on the block.  This 'young' MSer is interested in pursuing the HiCy Protocol (High-dose Cyclophosphamide) at Johns Hopkins.  She has conducted research into the matter and followed the experiences of those who have undergone the Protocol.

Chemoisnotapony.com was founded in 2008. Its name is derived from a quasi-hysterical and melodramatic telephone conversation in which the primary author of the blog screamed at her own mother: “Look, Mom. This is chemo we’re talking about here, ok? It’s not like I am asking you for a pony or something. CHEMO IS NOT A PONY, MOM, OK?!?!?! IT’S NOT.” The author of this blog subsequently collapsed on the pavement of a bustling urban sidewalk, repeating: “Chemo is not a pony, Mom. It’s not…” while drooling a mixture of snot and tears onto the asphalt. And yes, the author does realize, in retrospect, what a ridiculous spectacle this whole situation was.

But remember when you were a kid and you’d ask your parents for outrageously priced things, like a pony? Well, I was asking for help to fund the Johns Hopkins HiCy Protocol in the event that my insurance will not pay for it.

I have RRMS (Relapsing-Remitting Multiple Sclerosis), and I believe that aggressive treatment with HiCy may be my best chance at living a full, healthy life. This site is about my journey as I explore the possibility of pursuing the treatment.

Here's an excellent article describing some of the history of the HiCy Protocol:

"High Time for HiCy?"

Convinced they hold the cure for a host of autoimmune diseases, Hopkins researchers have refused to give up in the battle for acceptance. Now success is in sight.

Johns Hopkins presented this press release in June 2008 regarding results of the Protocol:

"HiCy Drug Regimen Reverses MS Symptoms in Selected Patients"

A short-term, very-high dose regimen of the immune-suppressing drug cyclophosphamide seems to slow progression of multiple sclerosis (MS) in most of a small group of patients studied and may even restore neurological function lost to the disease, Johns Hopkins researchers report. The findings in nine people, most of whom had failed all other treatments, suggest new ways to treat a disease that tends to progress relentlessly.

I asked my neuro nurse (aka MS nurse practitioner) on Friday about several MS drugs in the pipeline and those undergoing more study.  Her opinion was that the HiCy Protocol shows great promise.

• A difficulty has been the availability of stem cells for infusion after the chemo to "reboot" the immune system.
• Once the scientists figured out how to "purify" your own stem cells from your bone marrow, it has become a more successful procedure.
• Next challenge will be how to soften the intensity of the chemo required for the Protocol to work.  Currently, there are very strict guidelines to protect from infection since the patient's immune system is completely brought down to zero (ie. no raw food, no contact with people, etc.)
• When a way to make the Protocol easier on the patient, she believes that this just might be the closest thing to a cure for patients earlier in the course of their disease that we have seen thus far.
• It will be very interesting to watch the continued research.

There is an active discussion of Revimmune (HiCy, cyclophosphamide, cytoxan) at the This Is MS forum board.  One of the more known MSers online who has undergone this Protocol is Chris of ChrisHadMS.com .

The doctor never said the words, “You have MS.”

[Begin reading my story with Eyes in the Back of My Head]

When I attended my first ‘newly-diagnosed’ meeting at the Neurology Center, patients were asking each other, “When were you diagnosed?”

The month was September 2005 and I recognized one of the other patients with whom I shared space at the Infusion Center in August. She was one of those MS patients who had received a quick diagnosis, not even requiring a lumbar puncture (aka spinal tap) to test for the presence of oligoclonal bands which are seen in the spinal fluid of 90-95% of multiple sclerosis patients.

“I haven’t been yet.”

That’s right. I had already undergone two rounds of MRIs; the first as directed by my primary care physician to look for the cause of a ‘pinched nerve’ in my neck, the second as directed by the neurologist from whom my doctor wanted an expert opinion. I had one lesion in my cervical spine (neck) but my brain appeared normal, although 5% of confirmed MS patients do not initially have brain lesions on MRI, according to the National MS Society.

It was after the results from the spinal tap came back that the infusion nurse called me on a Friday afternoon to schedule a 5-day course of Intravenous Solumedrol (IVSM) the following week. My road to diagnosis never included a hospital visit.

“So does it say in my chart whether it’s MS or not?” I asked the nurse as she was preparing to start the IV.

“What did the doctor tell you?”

“He didn’t yet,” I replied.

She gets the high-dose steroid drip started.

“Let me go find out what I can.” When she returns to the room of IV-laden folk, she informs me that the doctor is on vacation and that he’ll have to speak with me when he returns.

“But you wouldn’t be here if there weren’t a very good reason the doctor wanted you to have the steroids,” she adds.

I think it was Thursday when the doctor returned from vacation and the nurse grabbed him to come talk to me while I was tethered to the drip. Somewhere between the muttered words, and yes he tended to mutter and I tended to not be able to understand him, he mentioned demyelinating disease. Non-specific demyelinating disease.

It would be another round of MRIs and two more months before I was officially diagnosed during a doctor’s visit in which he never outright said, “You have MS.”

In the meantime I was invited to participate in the monthly ‘newly-diagnosed’ meetings held at the Neurology Center led by my (now) MS Nurse.

So when asked in September 2005, “How long have you had MS?”

My reply was, “I don’t....yet.”

How about you, how long did you have MS before you had MS?

Please Be Kind to the Horn Player

I guess that some horn players missed a few notes at the Mostly Mozart Festival in New York this past week. But, ouch, what a harsh review.

Personally, I fear that the appreciation of live performance is slowly dying. In a world of recorded music where each sound can be sliced and diced to "perfection," listeners expect that music will always be, well, perfect.

I remember vividly a performance by a player at a Horn Festival years ago. Respected for being top-notch, he was performing the Gliere Horn Concerto, complete with orchestra accompaniment, at one of the opening concerts. Well, he was having a "bad night."

At the finale concert that week, he got up on stage to perform, but what he "performed" was something that absolutely every player in the room had likely wanted to do at least once in their careers (or practice rooms).

He began okay enough, but oops, he started to stomp all over the music. Then he took his horn and THREW it across the floor of the stage. He proceeded to kick it, and stomp on it, and picked it up again only to throw it back down.

At first there were gasped from the audience members, followed by roars of laughter and cheers. Some even applauded the creative performance in action.

What he reminded me was that life is often messy, not perfect, and that we need to be able to laugh at ourselves and not beat ourselves up. Even when we'd love nothing more than to beat our beloved horns to a pulp, we must be kind. Kind to ourselves and kind to our instruments.

So, please, be kind to the horn players. Or they just might come take their frustrations out on you because, honestly, they can't really take it out on their horns.

ARTS / MUSIC
The French Horn, That Wild Card of the Orchestra
By ALLAN KOZINN
Published: August 13, 2008
Orchestral instruments don’t come more treacherous than the French horn, either for the musicians who play it, or, when the going gets rough, for the listeners who find themselves within earshot.