Friday, June 17, 2011

Thank you!

I wanted to say thank you to everyone who has contacted me in regard to this blog!  The supportive comments, messages and private emails have all been wonderful and so overwhelming!  Thank you all for standing by me (or helping me stand - in more ways than one) during this journey.

Wednesday, June 15, 2011

The Copaxone Itch

So I have been on Copaxone for eight weeks tomorrow.  I know because I just checked.  It seems like longer than that.  I have gotten over the fear of needles.  The idea of giving myself a shot every day does not really worry me too much now.  The actual shot is not so bad anyway.   Everyone told me that it would be okay and it really is.   However, the site reactions are about to drive me crazy!  

I did okay the first five weeks I guess.  I had a little swelling and bruising but the swelling went away quickly (usually within an hour) and the bruising was really my fault just learning how to use the little injector thingy.   Now, however I have developed itching at the injection sites and lumps that sometime take weeks to go away.  The itching begins on the second day at each injection site.  When they start to itch they become red and warm.  After about three days they stop itching.  That is great but at any given point I have three that are driving me crazy.  Once the itch subsides a hard knot remains under my skin for sometimes weeks.   

These are all classified as a normal reaction, but that doesn’t make me feel any better when I wake up at night clawing at myself.  I do pretty well at not scratching during the day when I am consciously aware but apparently in my sleep I am not too worried about anything but stopping the itch.  I have scoured the internet and pretty much what I have found is that I will eventually get used to it or it will subside some with time.  Hopefully quickly!  I have tried all the tricks that Shared Solutions suggests to no avail.  I did just read online a few minutes ago about manually taking the cap off the syringe before inserting it into the autoject thingy to prevent any tiny drops from being on the tip of the syringe.  Since the medication is an irritant the theory is that the tiny drop gets on the skin at the time of the injection and causes the itch.  The only part about that that I don’t understand is that the itch usually begins on the second day at each injection site!  I am going to try anyway.  The lumps are not painful, but not very attractive.  

Having said that, I have not missed a dose in all of those eight weeks nor do I intend to miss one!  I am so thankful that there are medications out there that offer a possibility of reducing relapses!  I can deal with the itching and the unsightly lumps if it means that I might not develop any new MS lesions.  I am looking forward to my next MRI to see the results and see how this Copaxone is working for me!  Oh and if you pass me on the street and I’m scratching, well sorry!  Sometimes I just can’t help myself!

UPDATE JULY 4, 2011:  I DO think taking the cap off and making sure there is no medication on the tip of the needle prior to placing it into the Autoject has CUT DOWN on the itching for me. I have also had better luck with the lumps recently by icing them PRIOR TO injection AND THEN AGAIN AFTER. I still have itching but it does not seem to be as extreme as before and the lumps seem to be better (they don't get as big or last as long) with the ice before and after. I was almost to the point of doing manual injections but if this continues to work I think I am not going to go to that just yet.   ****** If this confuses you and you would like to know more please do not hesitate to contact me.  I will find the link to the page that I got the instructions from about taking the cap off of the syringe prior to placing it into the Autoject and put it on here for clarification!******

Sunday, June 12, 2011

Now I have MS, so what does that have to do with a Blog and why I am learning to "Blog"

On February 14, 2011 I had my first MRI; actually I had two that day. One was an MRI brain and one was an MRI lumbar spine. Two weeks earlier I had visited my doctor with loss of feeling, numbness and tingling in my right leg and foot. I was pretty sure of what was wrong when I went in that day. I had convinced myself that I had MS. A strange thing to jump to from a tingling leg but there had been other things prior to that that finally had started to add up.

My doctor (and friend) was hopeful that we could find something else that would explain the symptoms. He almost had me convinced leaving his office, but the nagging feeling never completely left my gut. He sent me to a neurologist for a nerve conduction test. We were hoping for a pinched nerve. After the nerve conduction test the neurologist told me that my right leg seemed fine however there did appear to be some irregular findings on the left leg. She told me that if I were her patient she would be looking for MS. She told me to tell my doctor that and she recommended an MRI brain. She tacked on the advice that an MRI lumbar wouldn't hurt to look for other things but based on her observations and what I told her, MS was more likely. After a tearful call to my husband and a quick rundown of what she had said I called my doctor and left him the same information in a message.

Very quickly I was scheduled for the suggested MRI's. Being a little claustrophobic I was not terribly excited about the prospect of climbing into that little tube and staying still for an hour but I needed to know what was going on with me. By the time I went for the MRI's, I could barely walk and had severely self limited driving because I could no longer feel my foot on the gas pedal or brake. This was seriously cramping my style. I had two very active kids that needed to get to school, practice and games and here I could barely leave the house!

I am a medical transcriptionist and type Radiology reports locally so once my MRI's were dictated by the doctor I had access to them. I had taken the day off that day but I work from home so of course I signed in to listen. I only got 17 seconds into the dictation and the radiologist had already said "multiple lesions" and "Multiple Sclerosis". That was all I needed to hear. I burst into tears. So many emotions washed over me.

I felt so broken. I felt completely betrayed by my body. I had stopped smoking years ago. I have a good healthy diet. I am diligent with sunscreen. I rarely drink. I have never done drugs. Why, why, why? It made no sense to me at all! What did this mean for my children? My husband?

It was about this time that my poor husband walked through the back door. He was met with a blubbering mess. I am not sure what I said but he got the picture. I remember telling him over and over, "I am sorry!" He just held me and let me cry for a few minutes.

Now, my kids will tell you I am a cry baby. I cry at Bambi and other moving movies and I cry at songs but I am a single tear kinda girl....not this sobbing person clinging to my husband. I am not sure how long it lasted but I finally pulled myself together.

I immediately started to plan because that is what I do. I am a planner. I research and learn and plan. I read any and everything I could get my hands on that had to do with MS. At the recommendation of a lady from my church I contacted a specialist in Houston for an appointment. The earliest available was two months. That seemed like an eternity. I wanted to go then! That day if possible. My body was betraying me and I needed to fight back. I needed medicine and guidance!

While waiting for the specialist appointment I went back to the original neurologist I had seen. She accepted me as a patient and ordered more tests (which is enough for a whole new blog post, I will save for a later date) and immediately started me on IV steroids for a week, followed by three weeks of tapering steroids. The steroid use is, I am learning, controversial, but I am so thankful for it. It was not immediate, but I did regain the use of my leg and foot. I will not be running any marathons in the near future but honestly I never liked to run anyway. It makes me sweat. :) I can think of much more enjoyable ways to dancing!

Anyway, I decided I was going to write about my experience to help me process it all. So many things have been turned topsy turvy in my life now, I needed to be able to put my thoughts down "on paper" so to speak. I tried writing in a journal for a day or two but I have never been good at keeping a journal or diary. I keep hearing about blogs so I thought I would start one. I also hope that my experience might help someone else who might be going through a similar experience. We can get through this together!