It is confirmed...

... I went to the neuro-ophthalmologist (Dr. Edward Cohn) this morning and he confirmed that I do have mild case of optic neuritis in my right eye related to MS. I already knew about the neuritis but it looks like there is some new inflammation. I am not on any medication (intravenous steroids or oral steroids) for it because there is not any scientific evidence that the benefits would outweigh the risks in such a mild exacerbation. Mild or not it is just annoying and making feel a little nauseous.

Dr. Cohn gave us his home phone number and email address and told us to call if things get any worse -- he also said to contact him regardless to let him know how things are going. :) He was really smart, very thorough and just a real nice man - I was glad we went to see him.

My first exacerbation ? (incluing some FAQs on MS)

I believe I just may have been having an exacerbation (temporary symptom flare-ups also referred to as relapses or attacks) for the past few days related to my multiple sclerosis. This could be my first one since my diagnosis 5/'07 so I am not a pro. I am not sure how to exactly describe my symptom but my eyes have been acting a little off, perhaps related to my optic neuritis? Fortunately vision changes are temporary. Due to my vision abnormality I did not volunteer today as I don't feel that it would be wise for me to drive.

Not to change the subject but I thought this would be a good time to provide some more information to everyone about multiple sclerosis (MS). I have been asked a few questions pertaining to MS and pregnancy, the cause(s) of MS, if it is genetic, etc. The following link to some FAQs about MS that addressed the above mentioned questions as well as some additional topics:

http://www.msassociation.org/faq/#question-7

I think this set of FAQs does a pretty good job with answering the questions with easy to understand answers. :)

The changing landscape of MS therapy

I received January's newsletter from Shared Solutions (a network of resources available to everyone, and that includes people with multiple sclerosis, their CarePartners, friends, family, or anyone else who has been touched by MS.) which contained a great article from Ronald Murray, MD, FAAN. Dr. Murray's article contains information that may help individuals to understand more about MS therapies.

I have received questions from a few people about the new 'pill' that the FDA is to review and if I will be taking that instead of Copaxone, my current daily injectable therapy. After consulting with my neurologist, we both agreed that it would be best for me to continue with Copaxone -- why fiddle with what is working so well for me :)

Anyway, below is the article from Shared Solutions' newsletter:

January 2010 Shared Solutions newsletter
The changing landscape of MS therapy
Expert on MS: Ronald Murray, MD, FAAN

With so much going on today in multiple sclerosis research, it's as important as ever to stay informed. But it's also important to stay focused on what is right for your individual needs -- and to say confident about your treatment decision. Part of being confident is knowing the track record of your therapy.

Dr. Ronald Murray shared with us his insights on current MS therapies, as well as those in the research pipeline, within the larger content of the immune system and overall health. Following are excerpts from his important conversation.


On staying confident with your treatment decision

"Let me start by saying that if an individual is stable and doing well on his/her current MS therapy, why would he/she want to rock to boat with something yet unproven?

In my experience, people do what is necessary to remain stable so that they can help maintain their lifestyle.

It is important to stay current on research and developments in MS, to talk about treatment options with a neurologist, and to discuss the impact of each treatment on the immune system. Remember, just because it may be 'a pill' doesn't mean it will be safe. The risks vs benefits of each treatment need to be discussed."


On how therapies impact the immune system

"The main purpose of the immune system is to protect us -- and if injured, to heal us. Different therapies impact the immune system in different ways to fight MS>

Although new treatments are still in development, early data shows that at least some of them may affect the immune system by reducing the number of immune cells in the central nervous system (CNS). This may increase the risk for serious infections and other health issues."


What advice would you give to those currently managing MS with injectable therapy?

"People need to become more knowledgeable about the immune system -- and how different therapies for relapsing-remitting MS (RRMS) affect different aspects of the immune system."

--Ronald S. Murray, MD, FAAN, is Director of the Multiple Sclerosis Clinic of Colorodo and has been and educator and researcher in the MS field for 25 years.

MRI results

Oh, got my test written results from my 12/13 MRI (after a 3.5 hr wait at the freaking neurologist's - really pissed me off). Nothing really changed, which is a good thing :)

12/8/09

Had my three month check-up with my neurologist this morning. Everything is well. I am having another set of MRI's done this Sunday (12/13) since it has been a couple of years since my first ones. The MRI's will be: of the brain w/o contrast and then of my cervical spine with and w/o contrast. The contrast agent is the gadolinium I had before. We will see if things have changed or whatnot after the MRIs are done - and back into the doctor 1/6/10.

I asked my neurologist about the pill that is to be reviewed next month for MS. She said that pill is not something she would recommend for me for a few reasons: two new (like a car, it's smart to wait until a new car model has been out a while so any kinks that may arise can been ironed out); this pill more for the more progressive forms of MS; and she doesn't want to mess with what is working out so well for me. Why mess with something that works, right?!

I had my H1N1 vaccination last weekend. The hospital Casey works at, William Beaumont in Royal Oak was offering a free H1N1 vaccination clinic so why not take advantage of that?! :) The vaccination's syringe needle gauge (23 or 24) sure was larger than my Copaxone syringe needle (29) but I am so use to needles now it wasn't a biggie. I cannot believe I am saying that.

Anyway, I will let you know the results of the MRIs when I know them.

FDA extends review until Jan. 22, 2010

FDA delays ruling on Acorda's MS drug until Jan.

Acorda Therapeutics says FDA extends Fampridine-SR review by 3 months until Jan. 22

On 6:38 am EDT, Thursday October 22, 2009

Companies: Acorda Therapeutics, Inc.

HAWTHORNE, N.Y. (AP) -- Acorda Therapeutics Inc. said Thursday the Food and Drug Administration delayed a ruling on its multiple sclerosis drug candidate Fampridine-SR by three months.

The agency was due to make a decision by Thursday, but the ruling is now due by Jan. 22, 2010.

Acorda said the FDA extended its review because it recently submitted new information on its risk evaluation strategy for the drug.

Acorda sent in the additional information following a meeting with an FDA panel on Oct. 14. The panel recommended that Fampridine-SR receive FDA approval.

Source:
http://finance.yahoo.com/news/FDA-delays-ruling-on-Acordas-apf-3235846838.html?x=0&.v=1

About Fampridine-SR

Fampridine-SR is a sustained-release tablet formulation of the investigational drug fampridine (4-aminopyridine or 4-AP). In laboratory studies, fampridine has been found to improve impulse conduction in nerve fibers in which the insulating layer, called myelin, has been damaged. Fampridine-SR is being developed by Acorda Therapeutics and manufactured by Elan Corporation plc.

About Acorda Therapeutics

Acorda Therapeutics is a biotechnology company developing therapies for spinal cord injury, multiple sclerosis and related nervous system disorders. The Company's marketed products include Zanaflex Capsules^® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company's pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.

Source:
http://finance.yahoo.com/news/Acorda-Therapeutics-Reports-bw-2362944900.html?x=0&.v=1

About MS

Multiple sclerosis is a chronic, usually progressive disease in which the immune system attacks and degrades the function of nerve fibers in the brain and spinal cord. More than 400,000 Americans have MS, most between the ages of 20 and 50, with women affected two to three times more than men. Worldwide, MS may affect 2.5 million individuals.

Research indicates 64%-85% of people with MS have difficulty walking, and 70% report walking to be the most challenging aspect of their MS. Within 15 years of an MS diagnosis, 50 percent of patients often require assistance walking and, in later stages, up to a third of patients are unable to walk.

Source:
http://www.pmdcentral.com/Acorda-Therapeutics-Announces-Positive-Vote-by-FDA-Advisory-Committee-for-Fampridine-SR/article/152332/