I have a son, 14, and a step daughter that is also 14. I am married to a wonderful man that I don't know what I would do without! I got my dx yesterday...they started testing me due to optic neuritis but I had my first problem FOR SURE in 2001 and have had problems since but I didn't even know what MS was....!
I don't know if it is really related or not but when I was 16 I went to the hospital because my left arm was numb. They tested to see if I had a stroke and did a CAT scan and sent me home. When I was 18 I had trouble with my jaws, they couldn't explain and it went way after a few weeks but I never forgot it because it was so weird...
I know now that I for sure had the MS hug in 2001. It hurt so bad I went to the hospital. They sent me from Dr. to Dr. and no one had a clue. It was accompanied by a headache for almost a month but the "hug" was never as bad as it was the first couple of days. After that I noticed I had mild fatigue and trouble with my bowels I had a bunch of tests for my stomach and they could never find anything wrong. I decided I would just have to live with it and I quit going.
I was fine until 2005, I started having numbness and tingling off and on and I had trouble with my vision in my left eye, but it was all mild. I went to an eye Dr and he said my vision was decreased in my left eye but he wanted me to wait to get glasses. My fatigue was much worse but I had lost my job so I was easily able to fit naps in and work around it.
In January of 06 both of my hands were weak and I had terrible spasms in them. It was like I woke up one day with severe carpal tunnel or something. I didn't have any insurance so I just lived with it and after about 3 weeks it just went away...
In June of 06 my L'Hermittes started (this has never gone away). I went to my chiropractor and he actually did mention ms but said if it didn't run in my family it was unlikely. I didn't have insurance and my mom had just been diagnosed with stage 4 lung cancer so I didn't pursue it. From then until May 08 I noticed a lot of memory and attention problems. My husband and I just joked about it saying I developed ADD and early onset Alzheimer's. I had already decided at this point in my life that they were never going to find anything wrong with me anyway so no need to waste my time and money.
Then May 28th 2008 I woke up with blurry vision in my left eye, the next day it was worse. I went to the local clinic and they said I had a sinus infection and it might be pushing on my eye, I have had plenty of sinus infections and this didn't feel like that but I went along with it. 2 days later my vision was almost gone in my left eye, like a black out and it hurt! I went to an optometrist and he thought my pressure was high and I should go to an ER, so I did and they had no clue, told me to see and ophthalmologist and acted like I was there for drugs or something. When I went to the ophthalmologist he did a whole work up and said "You have something called optic neuritis and need to see a neurologist". I was dumbfounded. The only thing I knew in that moment was that meant something was wrong with my brain and that wasn't good! He said I needed to be treated as soon as possible so they set me up to see a neuro the next day, which scared me more!
I went to my car and immediately called my best friend and asked her to look up ON. She said everything comes up Multiple Sclerosis. I called my husband bawling my eyes out! He does construction and was at somebody's house working where he should have been done the week before but he had some really weird trouble with the paint, he talked to the homeowner and she said not to worry if it took awhile, maybe God had him there for a reason. We talked and he tried to calm me down and finally we hung up. I still sat there in disbelief. A few minutes later my husband called back and said "You are never going to believe this but this lady where I am working has MS, she has had Optic Neuritis and she said to tell you that you are going to be fine" She has had MS for 20 years and you would never know it! She has been on medicine for a long time and has very few problems. In that moment I felt such peace and the feeling that this was God's way of telling me I was going to be fine. . (I have since become really good friends with that lady my husband worked for and she has not had any problems in over 6 years, she has been on Copaxone for over 10 years.)
The Neuro did that little exam in his office and said "you need insurance so go get some and come back" He set me up with IVSM and Prednisone taper. I immediately signed up for insurance and waited. The last day of the IV I needed a nurse to come out and start a new IV and the lady that showed up said "I was supposed to be off work already but I decided to take this call and I feel like I need to tell you that God is taking care of you and you are going to be alright. Just confirming what I already knew.
Once I had insurance I went back and he did the whole work up and took my whole history. I had my MRI of my brain and spine and the evoked potentials test. I went back July 21 and he said definitely MS, all of my EP test showed "markedly decreased response" on my left side and looking at my MRI he felt I definitely have had this for some time. I have 16 lesions in my brain and 3 on my C-spine.
My whole body changed with the Optic neuritis, I have very little sensation in my fingers, I have terrible pain in my left shoulder, my vision is not great in my left eye, mg hug very often but not too bad, terrible fatigue, balance trouble, spasticity in my legs and on and on and on... since my most recent flare in Jan I also have a very hoarse voice.
I started on Copaxone in July. I have had 1 relapse since I started but I have read it can take up to 6 months for it to work so I am still hopeful.
I have no prescription coverage for my Copaxone. When I found that out I was devastated! My church and friends, including that lady my husband worked for, provided me with 5 months and just when I was running out and starting to worry I heard from NORD that they would give me 1 year for FREE!! PRAISE GOD! I can re-apply after 12 months for more.
I know we all have an uncertain future but I believe that I am in God's hands and I just pray that His will be done in my life. MS has already opened doors for me to share God with other people that suffer from this and I pray that I can use my MS to make a difference for somebody else!
Jul 18, 2008
Nov 12, 2013