Where to begin,OMG!
Well I guess I will start off with a little bit about me. My name is Gabrielle
Most of my friends and family call me Gab or Gabi (except my mom who still insists on calling me G G) Im 46 years old, and married to a terrific guy,named Jim who has put up with me for 24 years. Together we have a daughter and 2 absolutely adorable grand children. We also have 2 fur babies, a Siberian Malmute named Lexi and a Black Lab mix named Tia.
I can say that I am pretty sure I have had MS quite some time (like 20 years) but no one every persued it medically, that is until recently. I started having trouble with my vision back in January, my glasses didn't seem "right" and I was having trouble keeping my balance, so I went to the docs and then the eye docs who then suggested a neuro opthomologist I went to him and he ordered ALL kinds of tests, half of them Im not even sure what they were or what they were suposed to be identifying.
Long story short by the begining of March I was falling ALOT, my arms and legs would go all tingly and numb kinda but they would HURT bad, my vison had come back some but I lost like 40 points worth of visual aquity, my periphial vision was shot and my depth perception was pretty well on the wane. by mid March I was sent to see a neurologist, I didnt like him at first and I almost didn't go back for a follow up visit but Im dang sure glad I did! He informed me through various blood tests and the like, that I had a malabsorption problem and he would put me on medication to help with that but he wasn't satisfied that that was the extent of my "troubles" he kept digging deeper and doing various tests, mostly MRI and the like but he was bound and determined to figure out what was causing my symptoms.
Finally this one day in March I woke up and my entire left side was all tingly but my arm and leg hurt like a son of a gun. I called the docs office and he wanted me in there the following Monday, this was on a friday.
Monday morning I went in, trying to use a 4 footed can for support. he looked at me and did a couple quik neuro exams then sat down and said, I want you in the hospital, Im gonna start you on a 5 day course of solimedral and I want to do an LP!
YIKES, this was getting serious here and I was getting scared... LP thats a lumbar puncture, I've heard horror stories about those.
So Hubby and I went home, I packed a bag, loaded up my laptop and called my mom to let her know what was going on.
It took forever to get a room, but the one compensasion was the only available one was a private room... I guess that was worth the wait. So hubby got me in and settled and then he took off to head home for the night. I was in for a night of IVs and blood draws and mri scans and no sleep. The next morning the doc showed up and did the LP. right off he said the CFS pressure was high, and this was not a good thing. then he sent off the fluid for further testing, the tests weren't over for me either, he ordered a cervical spine MRI w/wo contrast as well as a thorasic spine and a lumbar spine w/wo contrast PLUS a lower extremity EMG ( I had already had the upper extremity done a few months earlier, looking for carpal tunnel so he (thankfully) didn't repeat that one!) then it was back to my room for my infusion and (what I hoped to be some food and rest but nooooo I had phone calls and nurses and all sorts of things going on. The next thing I knew someone was there in my room it was the doc...good news he says, the lesions we found in your brain are isolated to the central nervous system, so thats a good thing, there is no periphial nerve damage so this treatment should help get you back up and functioning. I am ordering you a walker as well as a home care nurse, some physical and occupational therapy and I want to see you back 2 weeks after your last infusion which will be Thursday, so you can go home in a couple days!
It was a LONG 2 weeks but the day finally showed up and I went to his office and thats when he said it...He was 98% sure I had MS! He started me on Baclofen, Amantidine and Lyrica... He also made arangements for me to begin treatment with Copaxone. I managed w/o fail to take the copaxone every day, adhereing to the directions to a T but within 3 months after I began treatment with it, I had to stop using it. my body was REALLY rejecting it, I looked like a victum of "attack of the giant killer mosquitos" and I felt worse and worse dreading each day when I had to take it. Finally this one night, I refused to do the shot! My Left leg was killing me, I had all sorts of welts from differing days and I just couldn't bring myself to do it anymore. The following morning I called the doc and told him....IM done with the Copaxone. the site reactions are just too much for me to keep taking it.
He was not overjoyed but he accepted my decision. Since then, he has seen me several times, has revealed to me that there was no Ongolonacal banding in the spinal fluid and sent me to a different neuro, whose special interest is MS (although NOT an MS specialist)
According to This "new" neuro, after looking at all the test results and completing maybe a 5 minute interview/exam, HE is 98% sure I DON"T have MS! His suggestion this all powerful wise man... do a blood test for Myasthenia Gravis and then go back to Dr. Marcus. So I wait, to see what the bloodwork shows, if anything and then...well I don't know what, because Im not seeing anyone for this right now since Dr. M wanted to wait til the bloodwork came back. In the meantime, I continue to sit in "limbo" still suffering, and still no answers as to WHY?
Well it's been a long while since I have posted and I wanted to sort of give an update on things, it is now June of 2010 I have also seen a 3rd neurologist who took all of my MIR findings since Jan of 09 and went through them carefully, he IS an MS specialist and at that point my medical tie breaker. His resident did a full history from my childhood all the way up till the day of the appointment and Dr. Pierce acctually read it, and he kept refering back to it each time I went in and he did several basic neurological exams as well as is keeping tabs on my vitals
After the long awaited time that he spent going over the MRI findings, he had told me he could spot even subtle changes that "most" neurologists over look. He took almost an hour looking at the MRIs, He finally came in and sat down, he did the usual tests, with the tuning fork the pin and cotton ball the reflex hammer then he rolled over to where my chart was sitting and took some time to make notes. He then came back and was checking my strength hold your leg up don't let me push it, old your arm up...those kinds of things, then he went back to the chart he flipped back a few pages then he went to the main page and started writing again. this was all agonizing but I bidded my time hoping he would finally come up with answers for me. He didn't, he leaned back against the exam table and very calmly stated I do indeed have MS. The signs were clear, there were major changes in the MRIs that went unnoticed. As an expert in the field he was certain that that what was causing most ALL my problems. As for classification he said I didn't quite fit the standard catagories, which as he has seen many paitients, it's not always clear cut but in my situation he would most likely put me in a secondary progressive catagory but I was/am still having relapses and not quite recovering from them. So he classified me as a secondary progressive relapsing remitting. Then broke it down for me. I was in a secondary phase because I had already, over the years been dealing with the relapsing remitting, however I would almost complettely recover from them. He put me in the progressive phase as is evident that it is progressing and as I said earlier he added in the relapsing remitting because although my remissions weren't full remissions I was still dealing with the symptoms that did not go away from the previous relapse and I was having relapses quite often so he wanted to try and slow them down if possible. We then disscussed treatment options and I told him what the copaxone did So he gave me this handook and also a big case/folder and told me once I had the avonex in hand to call and set up an appointent for the nurse to show hubby and I just how and where to do the injections. He also put me on an oral steriod to help combat the current flare up. He then wanted me back in 6 weeks to get/give an update on things but if I had any problems in the meantime I could call him, and to also call if hubs or I had any more questions. so we came home and I started reading, I checked the internet I called MS friends to see what "possible" side affects I might be dealing with. as I read the book I saw that biogen (the avonex manufacturer) had a program that I could get 24 hour help, that a nurse would come to my home and help me with injections, and several other things and they would do this for free! So I filled out the form and faxed it to my doctor so he could fill out his portion and then I will be hearing from the people at biogen. So we shall see if the Avonex helps in anyway and then go from there.
I guess thats about it for now.
updated for content