Dave’s MS Story – Please pass along your comments for Dave and I will see that he gets them! Although the details change, his story is all too common among MSers.
My story is long but I will try to keep it short and thank you for caring enough to read. It started in 1997 after I was rear ended by a drunken driver. I had a vision loss, double vision, speech impaired, left hand and fingers shaking and bad headaches. They did an MRI and said I had MS. A couple days later I was sent to a neuro and he said I had a few lesions on my brain and than did all the MS tests and they all came back neg. He said I had a stroke instead.
Over the next 11 years I have struggled with vision loss and double vision, numbness stuttering and bad memory loss. In 2008 I was sent to a new neuro and had an MRI that showed 3 lesions on one side 2 on the other. Well she did all of the tests to rule out MS and they all came back negative. She said that the lesions were from smoking but I had not smoked in over 10 years, I didn’t like what she said because it didn’t give a reason for the symptoms I was having. I then lost my job and insurance. Well because of other injuries over the years I became disabled and finally got SSD and Medicare.
In Oct. 2010 my pcp ordered a new MRI and then there were 15 lesions on one side and 20 on the other and it also said I had a Dawson’s Finger. So off to a new neuro and all the test even the Lyme came back negative, he than told me it was from high blood pressure but he never asked me what my BP was because if he did he would have found out it was well controlled and even low enough for me to faint while trying to stand. Well a couple of months ago I started with extreme fatigue my left pinky went numb and the toes on my left foot went numb, than I started having horrible muscle spasms, double vision so bad I could not drive.
So I asked for a new neuro and went to see him Monday. After going over my previous MRI’s and doing some tests in his office he came in and told me that I did indeed have MS and probably had since 1997 and right now I am having a relapse only this time it is so bad I am having trouble walking and never have been in so much pain all over my body. He has started me on provigil and sent me home with a stack of papers and said to pick a medicine to start treatment with. I only have Medicare and looked up the prices of the meds, my Medicare will cover $2800 a year in scripts and the first month will wipe that out and all of the other meds I need.
Right now I am scared out of my mind. The stress level is so high I am and have been contemplating taking my own life which I fear because I have tried to in the past and now know what I did wrong. I am trying to think of anything I can to be positive but I am feeling like this MS is the nail in the coffin and only needs for the hammer to come down. I don’t want to live like this if anyone can words of encouragement or what you might have done if you have gotten to this point in life with this disease. All I ask is if anyone can, PLEASE HELP ME and yes I do truly believe in God and pray for comfort from him and ask him to stand beside me through this.
Besides the MS I also have spinal stetnosis,4 degenerative disk, a deformed hip from birth that also has an impingement and arthritis in it and last but least a form of schofrania and depression. I feel like a walking science or medical project. Well sorry for this being so long and let me get some of what is going on off my chest as I have no one to talk to or that will understand what I am going through. God bless and thanks for feedback
Today I go for Tysabri infusion #7. So far I think it is working overall. It seems like the relapses are further between. I pray that it stays that way. Now that it is a new year, I am interested to see if my deductible and billing gets messed up. It is confusing for the average Joe, much less someone with healthcare and insurance experience…oh and MS. HAHA. Balancing the checkbook is sometimes an impossible riddle!
Well I was supposed to go to my daughters’ school last week for “show & tell”. A senior there decided to write his senior term paper on MS and wanted me to come in for his report. We couldn’t get the time worked out so I didn’t make it. The girls said he did a fantastic job without me. It’s pretty cool how much he learned about MS and the interest he took in it. I think my kids learned something from him too.
Okay, I really do think I am a pretty optimistic person…a realist but largely optimistic. However, I have not been optimistic about there being a cure for MS in the near future. I may have to change my outlook on that according to these links. That is the beauty of the human mind, with education we can change our thoughts on things. This may be shifting my thoughts on this. Check it out…
ABC News correspondent Dr. Richard Besser and reporter Lara Salahi, did features on the encouraging state of MS research and treatment that ran January 5th on ABC World News with Diane Sawyer (5.9 million viewers) and ABCNews.com, respectively. The TV segment, which was sent out over the ABC news feed to affiliates, was used by local stations across the country during succeeding days. Cities included Colorado Springs, Denver, Tampa Bay, Evansville, Idaho Falls, Shreveport, Springfield (MA), Greenville, and Milwaukee
I think one of the most difficult things to do in living with MS is knowing when you are having a relapse and when its just symptom flare ups. In my experience, the days are truly up and down. Some days I feel more MS symptoms than others. It is when they are more painful and last longer that I begin to question the “norm”. Add to that when I experience a new symptom that has never plagued me before. Yesterday I noticed everything going haywire. That is the only way I can describe it. Pain in my legs has been increasing for a few days and last week my arm joined the pain group. Yesterday it was nearly unbearable to sit because my thighs and butt cheeks felt like they were on FIRE. In addition, there were multiple nerve “tweaks” – a crawling pain from my back to left shoulder that I have not had in months and the occasional electrical zap in the left side of my face. Of course, my dear companion fatigue has kicked it up a notch too. I think I will wait it out another day or so and see if I can rest more if that will help at all before calling my neuro…again.
I just finished reading Coffee in the Cereal – The First Year with Multiple Sclerosis by Lorna Moorhead. She created a site for moms with MS http://www.msmoms.com/index.html. I loved the book and the way it focused more on her attitude and finding a way to accept and live with MS. I think that is very important since there is really no way around it. A co-worker had an appointment with a neurologist today for migraines. She returned to work and announced to me that she was talking to her neuro about MS and he said they are very close to a cure. Well (giggle) let me know when they get there. I find it easier on my emotional state to live for today and not get my hopes up about a cure tomorrow. No doubt someday there will be a cure…but I don’t want to be disappointed when it doesn’t happen “soon”.
Yesterday I periodically felt a weird thing on the top of my head. It felt like something was crawling in my hair…I checked – there was nothing there. HA. Today it is gone but cognition is bad. I had to pick up buns at the grocery to take to the volleyball game tonight for bbq and I stood there staring at the buns not able to fathom how many I needed. I finally called my husband and let him give me a number. Geesh…not a good thinking day.