An old friend came to visit today.......

and I say that most facetiously. My 'ol buddy TWF (Train Wreck Fatigue) popped in unannounced, unexpected and definitely unwanted today. Actually one of the worst bouts of TWF I recall having. I DID manage to get up and get dressed this morning (which I absolutely insist on doing no matter how crappy I may feel).

It all started when I woke up at 1:00 this morning having incredible leg pain. Of course, my pain medication was on the table across the room. I didn't want to wake Mark by turning on the lights and I'm not quite brave enough yet to transfer into the chair in the dark. So, I just laid there and tried to keep myself distracted by following the unfolding evening in Iran on Twitter. (An amazing thing. Information and picture were posted there HOURS before the information was reported or the pictures shown on the news. God Bless those poor people over there. From now on if there is anything going on in the world, forget the TV, I'll be following things in Twitter).

Anyway, Mark woke up about 3 so I was able to get some pain medication on board. I think between trying to fight the pain (I know STUPID, STUPID, STUPID), the fact that it's a bit warm and humid up here and I haven't been feeling the greatest, just invited TWF for a visit and it was a TKO. I was down for the count. I'd wake up, look at the clock and promptly roll over and go back to sleep. I'm sitting up in my recliner now fighting to stay awake. It's very frustrating. From now on, the bottle of pain medication will be kept on my nightstand. No more stupidity of just "trying to get through it".

I just hope TWF goes back from wherever she came from tonight. For me personally, TWF is one of the most frustrating aspects of having MS. The fatigue is amazing. You really can't begin to accurately describe it. The closest I can come is lying in bed, literally dying of thirst and there is a glass of water on the nightstand. However, you can't even reach out for it because your too tired. We won't even talk about stamina. I think I've forgotten what stamina IS. Whatever it is, I know I sure don't have any.

The second most frustrating aspect of MS is PAIN. Bet you thought I'd say lack of mobility. When I was first diagnosed with MS, I considered myself very fortunate that I didn't have any pain associated with it. That all changed about 24 months ago. It started with neuropathy then graduated to spasticity. Now I will wake in the middle of the night with my entire body not only feeling like a semi-truck ran over me, but it backed up and did it again. Add neuropathy and the muscle spasticity and it can be rough. Fortunately, I rarely have all three at the same time. I usually have the neuropathy and the spasticity together. Only the neuropathy is almost constant. I try to avoid taking pain medication unless I absolutely have too. I take so much medication now just trying to keep the spasticity under control, but sometimes I have no choice.

The mobility issue IS very frustrating, but more than frustrating it's just sad. It seems as if another physical limitation presents itself almost daily. For a person who was TOTALLY type A, not being able to do what I want to do, when and how I want to do it is pretty challenging. So, I concentrate on trying to keep a positive attitude about it. Instead of focusing on what I can't do I try and focus on ways to do the same things. Just differently. Not always so easy.

So, that's where my journey with MS has taken me today. I hope your journey today hasn't been as bumpy!

I detest HMO's and now they are thinking of a Nationalized Plan?????

Went first thing this morning to visit my Primary are Physician. One of the toughest parts about managing life when you have a chronic disease with an HMO are all the MD's you need to see, and the wait to see them. A Physiatrist to manage your rehab program, Opthamologist for the eyes, Neurologist for the MS, Physical Therapist, Occupational Therapist and your poor Primary Care Physician who is supposed to manage it all.

I positively detest HMO's with a passion you can't begin to imagine. Not only as a patient but as an RN. Patients should be able to see whichever provider they wish (not be forced to drive 4 hours each way because UCLA is on the HMO's "preferred Provider list" and nothing else closer is) and MD's should be free to practice medicine and prescribe treatments, referrals and drugs BEST for their patients without all the bureaucratic B.S. that comes along with HMO's.


Now Obama wants us all on a Nationalized HMO program. I don't think I need to elaborate how I feel about that at all, so I won't. Goes back to not wanting to unintentionally offend someone.

So, because I have an HMO, I wait. I wait to see if some bureaucrat agrees with my Neurologist that. 1. I need to be seen at UCLA for Tysabri evaluation. (If they deny it guess what? I don't get the drug). 2. Approval of the motorized wheelchair. If they don't agree with both my Neurologist and my Physiatrist, I don't get one. (Unless we shell out the literally THOUSANDS of dollars they are).

My main job now is NOT to focus on any of this while we wait. As per my Neurologist I'm still exacerbating, I don't need stress to make it worse.

I'm also avoiding the news. Geesh....doesn't anything GOOD happen in the world anymore????

"You look better than I thought you would"

were the first words out of my Neurologists mouth today when he saw me. I chose to take it as a compliment and wondered how BAD I must really have been when I had my exacerbation in April. Of course, you know, MD's being MD's, they aren't going to throw you a bone without at least attempting to take it away. I just had to wait. I didn't have to wait long. He began grabbing at the bone with the question, "When did the foot drop start"? (I didn't have it prior to the April exacerbation or while I was in the Hospital for that matter). I explained that it started in rehab, hence the brace etc. He started tugging on the bone when he asked me to take my shoes and socks off, and he positively wrestled the bone away when he told me to close my eyes and tell him when I could feel him touch my feet. I had no problem feeling him touch my right foot. I kept WAITING for him to touch my left foot ANYWHERE. The longer I waited to worse I knew it really was. I've never met an MD that has enough of a sense of humor to make a patient wait for the touch and then yell "Gottcha, I haven't touched you yet" when you say you didn't feel anything. Sure enough, turns out my left leg/foot is worse than even I knew. I have zero....nada feeling in it (unless of course you count those horrendous bouts of spascity I have. Then the bloody foot has PLENTY of freaking feeling). End result. Request to insurance company for electric wheelchair and UCLA consult for Tysabri. SO, all in all a mixed review. However, getting back to his statement of "You look better than I thought you would". I really wanted to say, "Damn straight I do, and don't ever count me down and out again. I will NOT be defeated by this damn disease, I will continue to push myself harder than I should and risk my husbands' wrath (sorry honey) as well as the worry my friends before I give up. BECAUSE THAT'S WHO I AM AND WHAT I'M MADE OUT OF". Of course, I didn't I nodded my head at all the appropriate points shook his hand and made my follow-up appointment for three weeks.

Dirucotide Clinical trial. Potential Drug for Secondary Progressive MS

I alwys try to post any information that I either come across or is sent to me regarding any clinical trials related to potential new or existing MS drugs.

I recently received an email regarding a Phase III trial for Dirucotide.

For those who just want the highlights here they are (Remember the opinions are not my own, but those of BioMS www.biomsmedical.com and Eli Lilly):

1) This treatment actually delays disease progression (the first MS treatment to do so), and doesn't just treat symptoms.
2) It's the only treatment in trials specifically designed for SPMS patients - an entire subgroup of MS patients with NO treatment available to them (besides Novantrone, which elicits awful side effects and is a cancer drug.)
3) Dirucotide has no known side effects.

Frequently Asked Questions About
Dirucotide and the MAESTRO-03 Clinical Trial


What is MAESTRO-03?

MAESTRO-03 is a double-blind, placebo-controlled Phase III clinical study that is evaluating the efficacy and safety of a proprietary drug called dirucotide. Researchers hope that dirucotide could become a leading safe and effective treatment in delaying disease progression for secondary progressive multiple sclerosis (SPMS). MAESTRO-03 is evaluating the only novel agent in Phase III clinical trials anywhere in the world for SPMS.

What is SPMS?

SPMS is an advanced and especially debilitating form of MS characterized by an irreversible decline in both neurological and physical function. Of the estimated 400,000 Americans and 2.5 million people worldwide who have MS, approximately 40 – 45 percent have SPMS.

While there are numerous treatments available for MS, there currently is a lack of safe, convenient and effective drugs that are specifically indicated for the treatment of SPMS.

What is dirucotide and why is it viewed as a potential treatment for SPMS?

Dirucotide is a synthetic replica of the molecular site on Myelin Basic Protein (MBP) that is a dominant site of immune attack in MS patients with immune response genes DR2 or DR4, which are found in 65 to 75 percent of all MS patients. Periodic high dose intravenous administration of this synthetic peptide is believed to induce and maintain immune system tolerance to this normal nerve component. It is not expected to affect immune system reactions to substances unrelated to the injected peptide.

How has dirucotide performed in previous clinical trials?

In a study published in the European Journal of Neurology in August 2006, dirucotide showed a five-year delay in median time to disease progression in a subgroup of MS patients who have immune response genes HLA-DR2 and/or HLA-DR4. Dirucotide has been administered to MS patients in clinical trials for more than 14 years with more than 1000 combined patient years of treatment experience. Ongoing follow-up confirms that the side-effect profile is favorable.

How will MAESTRO-03 evaluate dirucotide’s impact on disease progression?

Patients enrolled in MAESTRO-03 are administered either dirucotide or placebo intravenously every six months for a period of two years.

Efficacy will be defined as a statistically and clinically significant increase in the time to progression of the disease, as measured by the Expanded Disability Status Scale (EDSS). The EDSS is a method for measuring different levels and types of disability caused by MS. The entire study period, including pre-treatment and possible follow-up visits, could be up to 44 months.

How many patients are participating in MAESTRO-03?

The study has enrolled approximately 510 male or female patients, ages 18-65, at more than 65 sites throughout the United States. Patients have a documented history of SPMS and have tested positive for immune response genes HLA DR2 or DR4. In addition, subjects have had an absence of relapse in the three months prior to their baseline visit, and have an EDSS score in the range of 3.0 - 6.5.

Are there any other studies underway for dirucotide?

An additional Phase III clinical trial evaluating dirucotide as a potential new treatment for SPMS – MAESTRO-01 – is currently underway and fully enrolled with 611 patients in Canada and Europe.

Who is developing dirucotide?

Dirucotide was discovered by two research scientists at the University of Alberta in Edmonton, Canada. The drug has been exclusively licensed by BioMS Medical Corp., a Canadian-based biotechnology company listed on the Toronto Stock Exchange (TSX: MS).

On December 17, 2007, Eli Lilly and Company (NYSE:LLY) and BioMS Medical announced a licensing and development agreement between the two companies granting Lilly exclusive worldwide rights to dirucotide. Under the terms of the agreement Lilly and BioMS Medical will collaborate on the development of dirucotide and will also share in certain development costs with Lilly being responsible for future R&D, manufacturing and marketing activities. BioMS Medical continues to oversee the current clinical trials for dirucotide.


I'll post more information as I am made aware. :)

As Paul Harvey used to say, "And now the rest of the story"

As you all know I went through a terrible exacerbation starting April 26th. (I don't think I'll ever forget that date). I ended up hospitalized, transferred from our local hospital to a hospital in Bakersfield and then into a Rehab facility. I'm still going through outpatient PT and struggling. I 0ften don't know which causes me the most frustration: Not being able to understand folks (especially instructions) due to my lack of hearing, my back pain, or all the symptoms from the MS itself. I just focus on doing the best I can with what I have to work with. I feel like I'm hoisting my own petard up, and as we all know that doesn't work for long. I know my butt is simply too big for my arm to hold it up for very long.

Anyway, while the majority of my vision has returned I'm still having A LOT of trouble with my near vision. Reading is exhausting and even typing is a real challenge. Hence one of the reason's I'm not blogging as much.

I went to see my Opthomologist last Friday. I REALLY like him. He's got a great bedside manner, yet doesn't pull any punches. Which, is what I want and NEED. Someone who WILL be totally honest but wraps the fist in velvet as it's swung towards you. He says I still have active optic neuritis in the right eye (keep in mind I'm still on 40mg of Prednisolone every day). He also said that the reason that I am having such a hard time with my near vision is that he muscles that help focus the near vision are paralyzed. He compared it to a zoom camera lens. The lens zooms out great, but when it comes to retracting it can't. Basically, there is nothing he can do. We have to wait and see what healing time does, and no, a change in glasses won't help. Thankfully I can se with my glasses anything further out than about 10 inches so driving isn't a problem.

No wonder I'm angry. I can't hear, now I've lost part of my vision and I'm losing my mobility. Yeah haw. Thankfully, I'm over the feeling sorry for myself stage. I'm just good and pissed off now. Fortunately, I have the type of personality that when I'm pissed, it just makes me more determined to beat whatever the challenge is. That, and read Job AGAIN.

I have an appointment with my Neurologist tomorrow. I'll let you know how that goes. Until then...be well!

NOT good fit

I find myself pretty frequently of late, not blogging because I'm too darn angry.

Goes back to the lessons learned of never speaking or typing when you could inadvertently say something that could remotely hurt someone else. Then, today I thought, "What the hell...so here goes".

This all started a week ago last Friday. Remember, I was trying to find someone to talk to. Everything, the hearing, the MS and not being able to work had just got to be too much. So, I called my insurance company, got a list of names and made an appointment with Dr. M.

Mark and I drove the hour for my appointment and noted something as I was waiting to be seen. Every time a patient was called back to see one of the MD's, they were back out in about 10 minutes TOPS. Soon, it was my name that was called. I wheeled myself after the person who called my name (the same person I may add who didn't even bother to hold the door open for the person in the WHEELCHAIR that was following her), and realized that this person WAS Dr. M. (Yep, I could tell this was going to be the beginning of a truly wonderful relationship).

Dr. M. then spent 10 minutes asking me the usual questions. Health history, do I want to hurt myself, am I hearing voices (she/he asked the deaf person, but I digress), yada, yada, yada. At the end of her/his question and answer session she/he put down his/her pen and asked, "So, what do you want from me"? I responded honestly, "I've lost my hearing, gone from dancing at my wedding 14 months ago to a wheelchair, I fell at work, hurt my back and can't work, my sense of self worth is crap and I need someone to help me develop some coping skills". I about fell out of my wheelchair when she/he responded, "I don't do counseling, you'll have to find someone else for that". She/he then whipped out the good 'ol prescription pad and said, "I'll give you something to help you sleep and an antidepressant. I'll see you again in two weeks". Of course for the whopping 15 minutes I spent with Dr. M the receptionist collected my $15.00 co-payment on the way out.

I tracked my husband down (he was outside waiting for me expecting the appointment to take an hour). Needless to say he was surprised to see me so quickly. When he asked how it went, all I could say was, "It wasn't a good fit".

So, the search continues.

And the rest of the story will continue tomorrow. I'll share last Friday's visit with the Opthomologist.......HE was great...it's the MS that continues to be ugly.