MS Awareness

Multiple Sclerosis (MS) is a big part of my families life. I have been diagnosed for 9 years with MS. I was misdiagnosed with Lupus Sle for 12 years prior to the MS diagnoses, My dr still thinks I have the Discoid Lupus (skin) in a mild form. I dunno I just know my skin is funky ha. Ive been sick on and off most of my life. Caught every virus and Itis going around in school and the community. My brother and sister could come home just feeling a little bad, stomach hurting and the next day I would have the full fever, stomach ache, vomiting and acheyness. THis has gone on all my life. It wasn't Until after the trial for the guy that killed my dad. (long story short, My daddy was a depurty killed in line of duty. THey had a trial for the guy (not much older than me, for the guy that did it. I went to it every day and sat through most all of it) after it was over I had problems with my leg and arm on my left side going numb and getting horrible headaches. I saw my dr he noted it and put me on steroids. said it was probably the stress I had been through. see if this took care of it. well it took a couple weeks but it went away but I had horrible fatigue. I had problems with both my legs and lower back. my hands were going numb and in the mornings I would collapse trying to get out of bed. I felt worse after I took a shower or bath. I wanted to sleep all the time. I had bad mind fog. had trouble remembering things and recalling names and events. I went from a smart Vivatious young woman to one that slept on the couch all the time. I saw a neurologist and a rheumatologist. They came up with nothing and told me I had fibromyalgia. I didnt like that answer this had to be more than that. I stopped drinking diet drinks no aspertame stopped drinking cokes and drank lots of water and started eating good. still no change. I got a little bit better over time but nothing miraculous and my jeans were fitting better after all the steroids. We still didn't know what was wrong with me. People at my church told me about Ochsners Clinic that they had some success there with their dr's in difficult cases. so we loaded up and went there. They couldn't find anything wrong until the regular Rheumatologist was out one day and a different one was in and she really stopped and looked at my chart and my tests results. some were slightly off and then she did a physical analysis that was way off. she was most concerned about my eyes. But one thing got her attention. I had this bright red butterfly like rash on my face over my cheeks and nose. THat is a definite sign of lupus (and now we are finding out you can have that with MS also) she rechecked my labs and said she thought I had a mild case of discoid lupus but I definitely had Lupus Sle (systemic) and my kidneys were in danger at the moment. finally, We had a name for this. Well we took the treatments and got a rheumatologist local (This is when we lived in Mississippi) They put me on several different medications but they just were not working and I was getting worse. My kidneys were causing problems I was getting infections like crazy and having uti's one after the other. I saw a specialist in Biloxi at the Urology specialists they helped a lot. I had trouble "going" then when I was finally going I had trouble stopping. They put me on several medications. They said it was the lupus causing it. I was so scared. John and I had been married for a bit and we wanted a baby. THey had me on Methotrexate and there was no way I could get pregnant while I was taking that. The dr said give it 6 months and then we will talk that having a baby would be hard on my kidneys. so I prayed and prayed got everyone I knew to pray got my church to pray. 6 months went by and I was doing better so I asked again. My dr said I had to be Off this Methotrexate in order to have a healthy baby and even then my chances of nothing being wrong with my baby were up in the air. I told him I will leave that up to God just get me where I can have a baby. He said I will take you off this medicine for 6 months if you can get pregnant in that time frame you will have a baby if not you need to go back on the medicine. I was crying. I hoped and then Prayed we could do it and not cause harm to the baby. So I went and saw my gynocologist. bad news. I had bad endometriosis. So he scheduled me for surgery to "clean me out" that would up my chances of getting pregnant make me feel better too. he said he didnt want to do any type of fertility treatments on me with me having been on such strong meds. just get this out of my system and Let God do the rest. I told him I have 6 months before id have to go back on the meds he said we have to hurry then. so I had the surgery it was a little tough but I did good. I felt so much better. I felt better just being off the methotrexate!! so as soon as the 6 weeks were up John and I let nature take its course and at 5 and 1 /2 months into it (nothing like cutting it close) I got pregnant. I had a difficult pregnancy but it was so worth it. After I had my daughter I had some problems with the numbness again. They assured me all this was normal after having a c section that it would all go away in time that I should relax and enjoy my new baby. I couldnt help thinking something was wrong but they insisted I was ok so I just told my husband what was happening to keep track of it in case something major happened. when our daughter was 4 months old my husband came home saying the man that hired him for his job left and they were firing everyone he hired which included my husband. we were devastated. I was on weekly therapy for lupus and we had this new baby to take care of. but GOD. GOd saw us through. somehow our insurance kept working and my treatments were covered i told my dr what had happened and he signed me up for grants and for manufacturer discounts. I NEVER WENT WITHOUT MY TREATMENTS!!! Bella our baby got her well baby care and her shots on schedule. JOhn couldnt find any work in the I.T. field back home in Jackson or the surrounding area making what he needed to make. so he looked elsewhere. The company that provided his dealership with the software and equipment to the car dealership was hiring. THe only problem was the job was in Mobile Alabama. 3 and a half hours away from our family. I couldnt imagaine being away from family with a new born. so I stayed while John went for the first year. I finally moved down with him and we bought a house and sold our house and moved all in 2 weeks!! YOu cant tell me that wasnt a God thing! Well I moved my drs to drs in Mobile and he wasnt so sure I had lupus but was treating me. fast forward to when Bella was about 4 I went numb again on my left side they did some tests but said here take these steroids and let us know if it happens again. ughhh ok. I was still taking lupus treatments. Then one day when Bella was about 6 I was in my scrapbook room, John had made me this island in the center of the room and I was putting stuff in albums and had them stacked up on the end of the Island, I was in my rolly chair. Bella was at school, John was at work but I think was maybe on his way home or had just gotten home or something because he got home right after it happened. but I fell out of the rolly chair my legs and feet all the way to my hips (yes I lost bladder control) went numb and I tried to catch myself on the corner end of the island and the top wasnt bolted down it was just laid atop of the cabinets. It lifted up and all those albums and stuff on top of that island came sliding over and down on me on my arm/shoulder and knocked it out of socket, I was screaming. I couldnt move I had stuff all on top of me. JOhn came in and was throwing stuff to get to me and grabbed that arm I screamed again said no other arm. he didnt understand and tried again I said YOUR KILLING ME. my arm is hurt. use other arm. he realised then that all the crapp fell on that shoulder and arm. he got my wheel chair out and got me into that and rushed me to the hospital. THAT is where I met my first neurologist that introduced the words multiple sclerosis. I argued with him. I told him I had been tested many times for it but never has it been conclusive that I had it. He said ya I am looking at your chart. You have had 4 incidents of this, THis being a big one. THis warrants an MRI and a spinal tap. I was going a whaaaaaaaaaaa? so He did the tests and he said the Mri lit up like a christmas tree and the spinal tap was 98% positive for ms. he said well you got it. we need to take you off this crapp thats not working for lupus since you DONT HAVEEEEE lupus and get you on medicine for MS. I was still just shocked He said first I want you to go to Birmingham to the MS Clinic and see Dr Bashir (I think that was his name he was the head of the clinic he was so awesome) and get a second opinion. Im sending them your scans and your spinal tap and all blood work etc. and you take your MRI to him and these notes I wrote and see which medicine he suggests. I think you should be on Rebif every day we need to be aggressive. But let him look at it and see what he says also. THen we will get you started. I was sitting there dumbfounded like IM GOING WHERE? so we went to UAB and saw Dr BASHIR. I loved him he was so calm and reassuring. He held my hand and told me It was for sure I had MS I started crying and he said sh sh sh its ok, Your not going to die today. I started laughing. I said will it be soon? he said not from this but yes you will die. but long time from now if its from ms. ms just makes you wish you were dead and he laughed i said OH GOODY. he said nah you can get through this. Its and he paused then said Uncomfortable. when its active you may be disabled. But never give up always push for better. stay on top of your health care and the most important thing is to keep moving and not be depressed, find you some good support be it your husband your daughter a support group a church friends whomever that will be there for you when it gets tough. you will have bad days but you will have good days too. enjoy the good days think of the good days on the bad days and reach for more good days. oh he was so awesome. he could have told me they were about to chop my arm off and id have said Ok. he had such a soothing voice. he said it is not fatal you can live a long time with MS. what people die of is their heart gives out or kidney isssues or organ failure from difficulties with ms. He made it sound so ok. like I wouldnt die from ms but complications of ms. but not till I was really old, I wished I lived there so he could be my dr I liked my neurologist too Ill call him Dr D he showed me his vacation photos and funny pictures he had taken in college etc. I think he thought I was depressed when that was just me. He was my dr for a couple of years until we got a MS SPECIALIST in town. whom I loveddddd! He was so awesome. He did so much for me anHad got me to feeling so much bettter through eating clean and exercise and weight lifting along with treatment. I wish he still was here but he moved back to DUKE to do research for a cure. I have it in my mind all these wonderful new meds that are coming out that he has something to do with them. I sure do miss himd though. He is a great dr. He had a wonderful bedside manner. He called me and emailed me between visits if he read something Id be interested in andchecked in on me. I have a new ms specialist right now Im not completely happy with him. He worked and studied under this MS Specialist that I loved. He sure doesnt have his bedside manner. he doesnt call back when you call with questions or have problems. I can not get his staff to call me back and Im having problems. its crazy Im not happy with them. Im thinking of goign back to my neurologist at least he calls when i have questions or problems. this dr also doesnt believe ms causes pain either. I highly disagree with him the numbness hurts. I have a lot of pain. some from ms some not im not sleeping due to pain. welll thats my story about how i got dx with ms and my ongoing saga. if your still with me and reading IM amazed. I thank you and I ask you to pray for all our ms warriors. its a tough disease that changes all the time. here is a link for awareness you can read