~ Look to your health and if you have it, praise God and value it next to a good conscience; for health is the second blessing that we mortals are capable of; a blessing that money can not buy. ~ -isaac walton- ~This page was created on August 27, 2002 Updated July ~ 2005 and was inspired by my own personal experiences with MS, Multiple Sclerosis. MS is a chronic, progressive and debilitating disease of the central nervous system. My story began in December of 1999. I hope you can find something of interest here, I have provided links and general info on MS. Enjoy your stay and don't forget to let me know you stopped by~ ~My story with MS began on December 4, 1999. I arrived at work as usual that cold winter morning feeling pretty good, a little tired, but other wise ok. Upon parking my car and opening the door to get out my right arm went to "sleep." I was totally blown away by it. How bizarre I thought to myself and just sat there a moment trying to figure out what possibly could be wrong with my arm. The next two days brought no relief and if anything it seemed to be getting more intense. My WHOLE arm was asleep and I just couldn't understand it. I visited a chiropractor a couple of days later and she said I was dehyrdrated and that my nervous system was under attack. Little did I know! I became increasingly concerned as the days passed and just couldn't buy what everyone was telling me, that I had a pinched nerve. I just knew it was something more and it was! I found a doctor about two weeks later and by that time my right hand was barely functional and the right side of my face, head and chest had also gone numb. I was scared to death! This doctor was wonderful and immediatly ran tests, sent me to a specialist, (neurologist) and spent hours with me examining me and trying to figure out just what could be wrong with me! MS never crossed my mind. A nurse of over ten years I have taken care of only ONE MS patient, a lady in her 90's! MS just didn't occur to me. After several visits to the neurologist, MRI, spinal tap and a slew of blood work I was told that MS was VERY likely the culprit. I was, to say the least, devastated by this news. I cried and cried and greived over this. It was with great fortune that a lady I worked with became extremly helpful to me during this time and prayed for me, listened to me and on more than one occasion, let me cry on her shoulder. On March 4, 2000 I visited a MS specialist at Dartmouth Hitchcock Hospital in Lebanon N.H. and he made it official that it was MS and immediatly started me on Avonex.(Read more about this ABC drug for the treatment of MS on my links page.) At this point I had researched the disease endlessly, somewhat come to terms with this awful fate and began to think more positively. With the loving help of my family and friends I have come to deal with MS and am hopeful for the future. My initial symptoms have since resolved and I continue to work full time as a Registered Nurse and live my life to the fullest. I have a wonderful loving husband and a beautiful 10 year old daughter (she was 7 at the time of my diagnoses and is now 10!) that have been my strong hold through all of this!! I love them more than life it's self and through all this have come much closer to God and have found unbelievable strength in His power of healing. I am not going to let MS get the best of me!! ~UPDATE!~ April, 2001 My husband and I had another daughter, born April 4, 2001. Hannah Rebecca!~ ~UPDATE~ March, 2002 Recently I experienced some vision problems which my optometrist confirmed was Optic Neurtitis ( a very common symptom related to MS which can sometimes cause temporary blindness, luckily, mine did not). I still need to be seen by a ophthamologist and am planning to resume Avonex therapy. ~UPDATE~ February 2003 My legs have been bothering me some. Mainly feelings of intense weakness at times. Sometimes I find myself tripping on my own feet! :-( It seems to come and go and the more tired I get the worse my legs get. Makes sense I guess, but worries me too. I need to make another appointment with my neurologist and see what's happening. ~UPDATE~ June 2003 I started to experience some peculiar symptoms around June 9. My left foot felt like it was asleep and the next morning when I woke up for work it hadn't gone away yet and it was actually worse. By that night my whole leg felt numb and fuzzy and things had moved on up into my arm, ear and head. By the weekend my foot was really hurting me and swollen some around the ankle. It just felt tight like it had a belt around it. About five days into this, the symptoms began to subside and were pretty much resolved until this Thursday the 19th when I got up for work again, the fuzziness and numbness was back. Only this time it's affecting my left hand more and I've been dropping things. Contacted my MD and she is going to make a referral to my neurologist at DHMC and have another MRI. Looks like I may be going back on treatment, only this time they want to try REBIF. As long as these symptoms don't get as bad as last time I'll be ok! ~UPDATE~ July 18, 2003 Well, this flare just won't let up! Severe numbness in my left side still, dizziness and even a distortion to my hearing in my left ear at times! The numbness is so bad in my left hand that it actually hurts and the Neurontin really doesn't seem to work at all. Advil helps though! I am waiting it out best as I can and anxious to see my neurologist and have that MRI done August 18th. I think I am going to go on Copaxone. It's less side effects, three times per week and given sub q vs intra muscular. It's totally different than the interferons, but seems to be pretty effective so that is what I plan to discuss with the doc on the 18th cuz I know he wants me on something and he pretty much gives you the option to choose which treatment you'd like! To see more of my updates you can visit here... http://blog.thebaraws4.com/ ~UPDATE~ August 18, 2003 Monday, August 18, 2003 I had my third MRI done today. Had to be at Dartmouth for 7 am! I left about 4:20 and got there at 6:30. It was pretty foggy in long spots along the way! No critters were out though, like those moose and deer! I had my head and spine done and then with contrast. I actually fell asleep in there! Which is amazing because you feel like you are in your coffin and they are pretty darn noisy! Anyhow, afterwards I saw Dr. Kasper and he checked me all out, listened to me explain what all of my last symptoms were and then looked at my MRI. I have three, maybe four new lesions in my head. They were never there before. There was one on my left side very near my brain stem and he said that one was probably the one that caused the problems with my hearing. He said my neck looked ok, but he'd have to wait and see what the radiologist thought. We then discussed what all of this meant and basically he explained that, physically, I haven't changed since my initial exam back in March of 2000, meaning, I have no deficits at this time. He said that when I get this severe numbness and other symptoms, like the hearing disturbance and vertigo, it means the myelin around my nerves are demylenating, but that then the body repairs it's self. They use to think that the myelin couldn't repair it's self, but they know now that it can, it's the axons that become damaged, the nerve inside, the mylelin is like insulation over the nerve, and it's the axonal damage that causes the deficits/dsyfunction or loss of use. So, he said that just by looking at my last 3 MRI'S that my course, thus far, seems to be mild, but that over time, if I continue to develope increased areas of inflammation, which is what they see on MRI, I could have problems, more than likely. So, he said I should go back on the Avonex, which is what I was on before. It's a once a week interferon injection. He didn't think I would need anything stronger at this time. He checked some base line labs for liver funciton and wants to see me again in six months. He also talked about me participating in some clinical trials that would be nonevasive, just MRI testing every three months or so. I'm not sure just because of the travel that is involved. I actually don't mind the MRI'S! So, it wasn't great news, but it wasn't the end of the world either. It actually made me have to "fully" accept the fact now that it is MS just because there were changes on the MRI and in the past there hadn't been. I did pretty well with the Avonex the last time I was on it so I'm confident I won't have any bad side efftects this time either. He also dismissed any claims that this drug loses it's ability to work after so many months of treatment. So I don't know, but I do know that I want to do something to alter the course of the disease so this is what I am going to try for now. I really like the MS clinic down there. They give you their time and they give you hope! More soon....... ~UPDATE~ September 10, 2003 Still NO Avonex!! I have a letter from the insurance co. saying they are going to pay for the medicine, but I haven't gotten it yet! I'll need to call them again! At least they approved it! I guess they have their own pharmacy, probably because this drug is SO expensive. I'd like to know what it really costs!! Hoping to start it soon! I'll keep you posted! ~UPDATE~ April 2, 2004 Well, it's been a while since I updated this page! LOL Still NO Avonex, after fighting with the insurance co. for over three months I finally said to heck with it! I'm just playing the waiting game. I'm sure my next flare will prompt me to go to the doc again, another MRI and then we can rehash the old medication issue. I know I should probably be on one of the current treatments, but first of all, my insurance does not want to pay for it and second of all, I'm still debating if the stuff really helps or not! Stubborn I know, but what can I say... Physically, I'm feeling good, (KNOCK WOOD!) Can't complain. I've started taking Vitamin D, they say that helps, who knows, but I figured it couldn't hurt and that is painless! I've also started on the Atkins diet and so far so good! I am only 9 days into it, the induction phase they call it, but I've lost 7 lbs!! So, I figure that has got to help. My goal is to lose at least 50 lbs! Well, guess that is all for now... ~UPDATE~ April 13, 2005 Here I am! Been a while since I updated on my MS, over a year now! Where does the time go? Thankfully, knock on wood and all that, I have been symptom free for quite some time now. Still no Avonex and I haven't seen the neurologist in over a year and a half now and I'm thinking I sould make an appointment sometime to go back and maybe have another MRI done just to see what's going on. My thing is though, if I'm feeling good, stay away from the docs! So, I need to contemplate that one some more. I'm still taking Vitamin D, been a year now and I've lost a total of 30 lbs since last year! So, that is a very good thing. I need to start getting more active again since winter is over and I can get back out and start walking again. Still working full time, still busy being a mom to two very active girls! Well, guess that is all for now...if I make that visit to the doc I'll let you know how it goes! ~UPDATE~ July 27, 2005 Ok, so I saw the Neurologist on June 20 and had another MRI of my head and spine. Good news is, there are no new lesions and no enhancing lesions. However, they have strongly encouraged me, once again, to start treatment. Their first recommendation was Rebif, but, because of the site reactions I had from the Avonex a few years ago, another doc thought that Copaxone would be the better drug. So, I've made the phone calls to the insurance company and I will be starting Copaxone in the next couple of weeks. Otherwise I am feeling well, knock wood. No new problems and I will keep you updated on the Copaxone! ~UPDATE~ February 9, 2006 Well, I never did start the Copaxone. I just couldn't talk myself into it. I've been symptom free for quite some time now, since about the summer of '03. However, I did just experience the worst inner ear thing you can possibly imagine. The doctors tell me it is not MS related, but rather a virus that disturbed my equilibrium and caused me to have severe vertigo and I was violently ill with nausea and vomiting. I ended up in the ER for a few hours getting IV'S and meds to stop the nausea and then they gave me meclizine to help with the vertigo. I am feeling better, but still have this light headedness when I move around. I can eat again, just light stuff, but thank goodness that awful nausea is gone! ~UPDATE~ November 6, 2006 I had another MRI and check up with the neurologist November 2 and things are looking good. He went over the preliminary MRI report the same day and saw only one new lesion which wasn't very easy to see. There are some that are gone and some that are still there, but none that looked active. My balance was a bit off, but other than that he said I'm pretty much intact! He then gave me the lecture on going back on treatment, I still struggle with that. Logically I know I probably should be on treatment, but based on my symptoms and my MRI's I just can't seem to talk myself into it, yet... Otherwise, things are looking good, I feel good and life is good!