Keep on keeping up :)

It has been quite some time since I've posted anything...what, 4 months now? There just has not been much going on in the MS front *yay*. Besides, my last visit with the neurologist was early July and the next appointment is not until January '11. I have graduated from going every 3 months to every 6 months! Wow, just in time - we move and I start over again with another doctor. *sarcastic laugh* Well, since there isn't much to report on I might as well share some miscellaneous happenings going on with us....

Monday, 9/27/10, Casey and I will be flying into Las Vegas for the American College of Emergency Physicians (ACEP) convention. We arrive around 7pm and will be there until the early afternoon Friday, 10/1. It will be a great opportunity to do some networking and hopefully acquire additional places to interview. It isn't like the nine-months-until-we-move deadline is all that far away. (wow - really... moving again?!) Oh, and of course we are not going to be all work and no play... we're also are viewing this chance for a mini vacation to have a bit of fun. Why not - after all, it is Vegas!

Casey has an interview for 11/9 lined up at Kaiser Permanente located in Walnut Creek. He is waiting for the time off to be approved before we can book his flight. It is our number one choice so it's pretty exciting. Please luck, be on our side.

Our first wedding anniversary is coming up (9/26), right before we leave for Vegas. In a way it's perfect timing because Casey is working on our anniversary (but has the prior day off) so we figured why not celebrate Vegas style. The trip is sandwiched between our wedding anniversary and the 'since we have been together' date, which is 10/3 and marks 13 year. CrAzY cOoL!

Anyway, Happy *early* First Day of Autumn (9/23)!

Multiple Sclerosis: Advances in Research and Treatment

One of the more common questions people as is 'how did you get MS?" I always explain that currently, there are a few factors (i.e. environmental, genetic, viruses) that may be the cause; however, no one really knows the answer... yet. **To read on 'What Causes MS' click: http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-causes**

Anyway, the purpose for this posting is to give awareness to an article posted on WebMD about some additional research finding some "genetic underpinnings." The article also discusses a few other topics such as repairing damage (remyelination) and new drug treatments of which some do not involve needles; however, as I posted in my 12/8/09 post, the new drug(s) are not ideal for my situation. Besides, my neurologist is happy with how my current medication is working for me. Hopefully there will be a day I will be without needles, the accompanying sharps container AND get some remyelination. :)

Check out the article (the URL is listed in the sources below) it is very informative.


Sources:

• http://www.webmd.com/multiple-sclerosis/features/advances-ms-research-treatment?ecd=wnl_mls_052110

Interesting article..

My friend, Amanda, shared the following article with me that I wanted to post the link to for those who might interested in a short read:

~ I Have Multiple Sclerosis ~
http://www.thefrisky.com/post/246-i-have-multiple-sclerosis/

There were portions of the article I could definitely relate to. I liked this one: 'Unfortunately, most MS medications come in shot form, and I am not talking about tequila. Not only did I have to remember to inject myself with medicine daily, but I also had to overcome my fear of needles.' Very well put!

After reading this, I have to say, I have another perspective and am grateful to how my individual experience with MS has been. To me it just seems relatively more pleasant than the female who wrote the article. It just goes to show that MS is not a one size fits all disease - everyone is impacted so differently, even if they have the same type of MS.

******

I recently read an article out of Momentum Magazine, the magazine of the National Multiple Sclerosis Society, titled The Worst Thing Anyone Ever Said to Me. The article was about readers responding to a previous article, "Things you may want to avoid saying to someone with MS". Momentum asked clinical psychologist Dr. Peggy Crawford for her perspective to the responses. I will provide the URL for those interested in reading the entire article; however, I wanted to share a small portion from the article that stood out to me:

Handing people printed information about MS didn't go so well. Instead, many family members want to learn directly from you. "They don't want to know how MS affects everyone - they want to know how it affects you." Ask them how they would like to learn.
{Momentum Magazine (Summer 2010)- http://www.nationalmssociety.org/multimedia-library/momentum-magazine/index.aspx}

Friday, 2/12

Yesterdays appointment with Dr. Cohn went well and very quick :) Doctor said my eyes look a lot better and said I can perform the eye test a lot better too.

Casey and I both went to the gym last night - felt great. I volunteered this morning too. It feels really nice to get back to my schedule.

Anyway, Happy *early* Valentine's Day....

My 'recovery' & follow-up appointment 2/11

I have a follow-up appointment this Thursday afternoon with Dr. Cohn.

For the past couple of days I have been feeling a little bit better. I am taking it easy and not exerting myself, which includes not going to the gym or volunteering. I'll see how things are going after my follow-up appointment. Anyone that knows me is well aware that I am a busy body and too much relaxation is really not for me *laugh*, but when your vision is a little off taking it easy is not too hard to do. :)

Anyway, until Thursday's appointment....

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 :)