So I have decided that if I am found to be a good candidate for the HALT MS study I think it would be great for all of us with MS to have some kind of documentation of the process. Of course the doctors will all being doing their own documentation for their studies and journals but how often do we actually get a patients point of view, what they are going through, how it effects them and in a way that we can read it and understand. I don't know about you but most of the clinical trials/studies that I have read are informative but pretty much just the facts...which is fine if you are a doctor or researcher, but as a person with MS you may want to know more...I know I would. So, I will let you all know very soon but if I am found to be a candidate I plan to document the whole process. And of course I think it is important to remember that with everything....each one of us are different. We may all have MS but we all have different reactions when it comes to how our bodies respond to various treatments. That is part of why it is so difficult to treat this illness....sure we may have similar symptoms or situations but we are all unique....they say no two MS patients respond the same. So now that I have given my two cents about that....

So this is where I am in the process. Last week when I saw my neuro I was referred to the study. Then the study coordinator called me and we started the whole process. I faxed over my release forms and the study coordinator left me a message yesterday to give her a call on Monday....they have already started getting my records in. So that is about it. Mainly paperwork and waiting at this point. As I find out more I will let you know.

Until then I hope this finds you doing well and enjoying your weekend. Take care! :)

Although it has not been too long since my last post I feel that there has been a lot going on. Last week I traveled to Seattle for follow-up appointments with my Neurologist and Sleep doc as well as saw two new Pulmonary specialists. I am still trying to process the information to be honest. My first appointment was with my Neuro. I am officially no longer on Copaxone. I had a pretty bad relapse just about 3 weeks ago and between that and all the pain and problems I was having with it...we decided this just was not working for me. So, that leaves me with little options when it comes to treating my MS. Because of this my Neuro talked to me about what I believe is going to be a ground breaking study. She has referred me to the HALT MS Study. For those of you who have never heard of this study, well here it is.....HALT MS Stem Cell Transplant Study

Now at first I was a bit uncertain about the idea of having a stem cell transplant. But, as I started to look into it, learn more about it, and realize that I very well may get my life back (or some of it) I decided that this just may be my best option. Besides a few weeks of tests, chemo, steroids and pain is well worth it if it is successful, which I believe it will be. For so long now I have been sick...not just MS but each one of my medical problems seem to feed off of each other. Maybe, just maybe, if I can get my MS to settle down then some of the others will follow-suit. Granted that may just be a pipe dream, but I am remaining hopeful! :) Anyway, as I go through this process I plan to document the whole thing. I will keep you all posted on how it goes. If I am found not to be a candidate....well then there will be documentation of the process. For now I am keeping my fingers crossed and staying positive that it will all work out. And, if it does turn out I am not a candidate then we have a back-up plan of either Cytoxan or IVIG. So any way you look at it there are still some options. :)

My other appointments went okay. The new Pulmonary docs have some ideas but kind of feel like my other doc (who referred me to them). My lungs are not good....36% function. But, they feel some of my other health issues...my MS and GERD in particular are more likely the culprits of what we all thought were lung problems. See, just because it looks like an asthma attack and feels like an asthma attack....doesn't mean it is one. Now I already knew the MS could cause problems with swallowing, aspirating into the lungs, and vocal cord dysfunction....but what I didn't know is that GERD can also cause issues with the vocal cords. Both of these together is kind of a nightmare situation and then when you put together the fact that my lungs don't work great anyway....it doesn't take much for me to having breathing problems. So, they are coming up with a plan of action and then my original Pulmonary doc will follow-up with me. The sleep doc was really just a follow-up....just needed humidifier.

Well, I hope you are all doing well. I really should get to bed....maybe that is something I should be talking to my sleep doc about....my chronic insomnia. Don't you just love those ups and downs? Or am I the only one who seems to get them. Seems some weeks I can't get enough sleep (gotta love the fatigue) and then other times even when I feel tired, I just can't sleep. Lovely! Okay....I'm off for good this time. Take care of yourselves.
~Jaime

Hi Everyone! I got an email a little while ago from Ashley at MediciGlobal regarding a Clinical Research Study. Please read the following message regarding the study and if interested give them a call. Thanks! :)

RE: Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis.

Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS. The investigational medication used in this study is called teriflunomide (ter-i-flün-o-mïde). It is derived from leflunomide (le-flü-no-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease. The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit http://www.blogger.com/www.tower3.msstudies.com or call 1-866-565-0245 today to learn more about the study and see if you may qualify.

So, if you or someone you love has MS and is looking for a different medication or an opportunity to try something new, give them a call. I personally don't know what the criteria to participate in this study is (with the exception of being 18-55 with RRMS) so it will be important for you to call if you are interested. If you do decide to take part in this study and you are a good candidate, please let me know. I would love to hear how it goes and what progress is being made.

I hope each of you are doing well. Take care!
~Jaime

Today is the 5th anniversary of my diagnosis. Something interesting about today....today is Friday the 13th and 5 years ago when I was diagnosed....it was also a Friday the 13th. My son said he was hoping that since it was a Friday the 13th when I was diagnosed he was hoping today we would find out it has all been a joke. Wishful thinking! Not gonna happen. And that is okay. I have more than come to terms with the fact I have MS and I have learned to live with it. Sure there are days where I would rather not think about it and there are days where I would rather not pay attention to it and then there are days that I can't help but acknowledge it. If you have MS you know just what that is like.

So the last 5 years have been interesting to say the least. It has been the ultimate learning experience. Learning how to navigate this new life. Learning to be patient with myself and others. Learning to reserve my energy so that I don't overdo things and end up having a bad day. Learning about MS and how it affects me, how it affects my family and most of all learning how to manage day to day. So, on the 5th anniversary of my diagnosis, I am happy to know that I am doing all I can to manage my illness and live life the best way I can. I hope this finds each of you doing well. Have a great weekend! :)

Okay....so I am coming up on 5 years since I was diagnosed...crazy to think that. What an adventure this life with MS has become. My 5 year will be on (drum roll.....Friday, February 13th). Yep, that's right....Friday the 13th. Funny thing is that 5 years ago when I was diagnosed it was ALSO a Friday the 13th. Hmm...maybe I will get lucky and get a phone call saying....jokes on you...you don't have MS. Right! That's not gonna happen.

Anyway, enough about crazy non-sense. So, I am currently on the lovely steroids. Kind of a combination thing going on here. See, I have had this pesky cold coming and going for a while now....late December I would say. It has not wanted to go away....turned into a Sinus infection, got a bit better, then a sore throat, got a bit better...and so on. Well, now it is bronchitis and my lungs (having only 36% function) are not very happy about that. I have had a horrible time breathing. My pulmonary doc put me on a prednisone taper and I did that for a couple days....but in the meantime my MS decided that hey, my lungs were not the only thing that was gonna act out. You know how it is...doesn't take much to set off MS. So, as if my typical symptoms (you know, the ones that are there every day that you just learn to manage) were not enough...I started having problems swallowing....which led to my aspirating into the lungs, then the muscles in my throat did not want to work and my vocal cords started to spasm....making it that much harder to breathe, then came the severe numbness, weakness (back to using the walker for a little while), headaches....I could go on and on but I am sure you get the picture.

I called my Neuro and filled them in and sure enough....MS relapse. Truth is since coming off the Novantrone I have not been great. That medication was like liquid gold for me I think. It completely gave me my life back and although there were times when MS would remind me it was still there....it was SO much more manageable. Unfortunately all good things must come to an end in this world of MS. Hopefully sooner than later that will not be the case. I know they are constantly doing research and studies to find us something better....in the meantime I guess this is just it. Time to just do my best to stay positive, live life, and hope for a cure!

Okay....back on subject. I am going through this CRAZY! thing right now with the steroids. It must be what most people are like actually. See, I have been on some kind of steroid pretty much my whole life because of my Asthma. I never had IV steroids until MS but I never got any of the crazy side effects that I have heard happen. For example....over the last almost 5 years of MS I have always been one of those people who could go in for my steroid treatment, go home and sleep for hours. It never really did me in when it came to blood sugars, blood pressures, or other side effects that I have heard so much about. Something has changed! In June when I had my really bad relapse....the one where my whole left side went and I was in a wheelchair....my vitals were all nuts. My BP and BS were off the charts, I felt a bit nutsy, but I was still so wiped out that I could sleep. I think that was just the beginning of my body's change to these steroids.

This time (today will be treatment #4) I have been jittery (never had that happen before) can't sleep....granted when they do the treatment I am tired, but after I am wired for hours. Can't seem to form my thoughts in an organized manner at least....I just feel like I have 8 billion things that I am trying to do at once and no way to get it all done (funny thing....I don't have 8 billion things to do). What a crazy feeling. So, here I am....somehow joining the ranks of the crazy steroid side effects. Whatever works.....one thing I do know is I am finally starting to feel better and when these effects go away....I will be good to go!

Well, I hope all of you are doing well and that this was not TOO long of a post (I am sure it kind of was). Take care and have a good Groundhogs Day! I almost forgot that was today. :) I'm ready for summer....bring it on!