My Journey towards a DX

Back in 1992 I  was living in Las vegas with my boyfriend, now husband and my 2 year old daughter. We only had been living out there for about 3 months. I was at the end of a divorce with my daughters father. I was young about 23 years old. One morning in Nov I woke up and lost complete control of my left hand. It was strange and scary. I couldn't grip anything in my hand, I had no strength in it at all. It was just paralyzed. I had no insurance but my boyfriend found a med. office and I gave my soon to be ex husband insurance info. During the exam they discovered a weakness in both my legs. They ran some tests, I wish I knew now what they were  but I was 23, young and scared. One of he things they noticed was that when I raised my left arm above my head I would have no pulse at all in my left hand. I could actually feel the blood draining out of my arm. They wanted to do an MRI but I had no insurance so I wasn't going that route. They put me on a steroid . They told me they thought that a muscle in my neck was cutting off the blood flow to my hand and they wanted to operate. There was no way I was going to have a surgery they thought was dangerous without any one in my family near by in case of any problems. I took the steroids told them I would set up the MRI , and never went back. Two weeks later my hand mysteriously came back. During this time I had been talking to family members about what was happening to me and of course we all felt that if I did need any type of surgery I would be better off coming back to New York. One day while on the phone with my sister and telling her what was going on ( She was a nutritionist for HIV Dr.s and their patients) She said to me "oh my God Cindi has anyone tested you for MS"  and that was the first time i had ever even heard the word MS, in fact I was so uneducated that I thought that was what Jerry Lewis was having his marathons for since I was a kid.


Needless to say I came home to NYC, stopped the meds. and went about living life the way any normal  23 year old does. My problems were gone and I just thought  the Dr.s in Nevada must be idiots.  After I came back I went back to work in the city and discovered that i had real issues with weakness in both my legs, I had a hard time walking far distances which if you worked in the city that was a problem. I began getting pins and needles in both my feet. For as long as I can remember i have had a dropped foot with my left foot. I don't really know when it began it seemed to be there forever. I started going to a PT and truthfully that didn't help. By the summer of 1993 I was preg. and all my problems seemed to vanish , at least I think they did because I stopped working and had no reason to walk as much as I did when I was working. During my Preg. they said my blood sugars were elevated and I needed to watch my sugar intake. Before my Preg. I was 98 lbs soaking wet. and during I only gained about 25lbs . . Gave birth to my second daughter no problems at all. In Dec 1995 ( seems everything happens to me in Dec.) I was in my last trimester with my third daughter and I was hospitalized with out of control blood sugars They had to put me on insulin and run tests to make sure there was no damage done to the baby. They thought it was only gestational diabetes and that after I gave birth i would be fine. but at age 26  about a month after my daughter was born I checked my sugar just to see what it was and it was through the roof . So I had to find a endocrinologist. I had no idea how long you had to wait to get an appt. with those guys so I had to put myself back on insulin slowly i knew that the amount of insulin would be different because when your preg. you need more than you would if your not. I didn't have a medical Dr. so I was on my own. By the time my appt came I was well controlled and the Dr. was in shock that I was able to figure out how much I would need. After I gave him my medical history I heard the words MS for the second time. The Dr. wanted to know why they didn't check me for it, asked if I wanted to get an MRI but I said no. I figured the problem was gone and I had enough on my plate with the diabetes.


Over the next 11 years any time I have given my history each new Dr. would bring up the MS word and each time I just put it out of my mind. Through the years following my forth and final Preg. (a boy)
I had issues with my knees giving me pain or my hips weakness on and off. pins and needles went away after I was DX with the diabetes. The drop foot was still a issue but it had been happening for such a long time I never thought much of it. I should mention that by the time I was 30 we had a friend who had a brother who had MS in his teens, he had a very progressive form of the MS and his sister who was about 2 years younger than me was DX with the MS. In the back of my mind I worried about the MS I wondered but I just wasn't ready to look. One day I listed all my symptoms to her and she looked at me and said if thats the only episiode you ever had just put it out of your head and go live your life. She scared me. She went down hill quick but mostly due to her own abuse of her body, she just never could accept the DX and because of that this girl who right now is only 37 is living in a nursing home she is un able to be on her own anymore. ( again she did most of the damage to herself drug abuse and not doing anything the dr. wanted her to do ) But I put it out of my head. When I was 32 I got a phone call that my half brother who is 6 years younger than me was DX with MS. They wanted to know if I ever got a DX . I was ashamed  to admit that I never bothered to pursue it.


In Sept . 2006 I started to feel a coldness in my left foot. it wasnt even winter yet, but no matter what I did the foot was cold. Being a diabetic I made an appt with my PCP  and he didn't think I had any issues with circulation, but he gave me some Medicine to help the blood flow. (more of an herb I think) By the spring of 2007  I was walking with my dad about 5 miles a day and we noticed a funny thing was happening, on the first half of the walk I was fine but during the second half I began dragging my foot back. It would make a strange slapping sound and it looked like I was dragging it . I put a call into   my endocrinologist told her my problems she sent me to a Circulation specialist . This guy took one look at me and was such a jerk wanted to know why I was there, he looked at me like I was some kind of nut. He was basicaly trying to blow me off. He was annoyed that I was wasting his time. So I asked him if he thought my symptoms could be MS related and he yelled at me and wanted to know why on earth I would say that so I told him about my brother about my dropped foot, my leg weakness etc etc, he told me that I didn't have MS and I didn't have any issues with my circulation and good bye and good luck to me. At my next  endocrinologist appt. I was looking through my chart at my recent blood work and low and behold there was a letter from the good Dr. Jerk to my Dr. in which he told her that I should be seen by a nuero. Dr. as I am describing MS related symptoms and he felt it should be followed up. What a jerk, he made me feel so dumb in his office and then he makes it sound like this was his big discovery. My Dr. was very upset by his letter she thought he was crazy and she was going to blow it off but I broke down and told her that I think there might be a possibility . So she gave me the name of a nuero that she knew would see me right away , just because she wanted the MRI to ease mine and her mind. She also told me not to mention the MS and not to put ideas into her head to let her discover if there was a problem on her own.  


This women was a wacco she didn't have her own office, she was borrowing office space, she Asked the usual questions but other than asking about my mother and father she never asked about anyone else in my family with a history of nuero. she did a quick physical she actually got on her hands and knees because she had me sitting in a chair to examine me as  the exam table was her desk covered with her charts and papers. She did discover a weakness with my left side as compared to my right. She was basically going to write me off when my friend turned to me and said your going to hate me. and she then made blurted out that I had a brother with MS. Well that changed everything, she asked me why i didn't say that to which I replied you never asked. she sent me for an MRI with and without contrast. My friend and I would joke for weeks about my results probably being in the trunk of her car, and what if it got robbed. I had to call her cell phone to set up any appointments she was really a class act. Anyway May 2007 I went back to her (borrowed office) and she told me that I had MS and that she wanted to do a Spinal and some other tests and that we should probably should discuss medication after my next visit. I looked at her and said what makes you think I would take meds seeing as how I haven't had an flair or an attack in almost 15 years? She was taken aback and she said "oh ok well maybe we wont do medication ,but lets discus it after the tests." I knew I needed a real Dr. but I wanted to have the tests done and then take that to my next Dr. who would be my second opinion and the Dr. who would care for my MS.


I found a MS specialists in NYC he came very well recommended and he is a part of the International Multiple Sclerosis , He is in fact the head guy. I had to only wait 4 months for my appt. I could have seen a different Dr. but I figured I wanted the top guy, and since he does not take insurance I wanted to get my moneys worth. My husband is the one who talked me out of the spinal, he said " why do a spinal for a Dr. you don't even trust, what if the specialists wants you to do another one?" good advise, my husband is a smart guy. I brought my MRI and my journal of all my old and new symptoms, and my timeline. He is a wonderful Dr.  After reading my answers to all the questions they mailed to me about my condition, my time line . and doing a physcial exam of me, then reading my MRI he said I can 99% DX on your MRI alone, he wanted blood work to rule out other things and then based on that would determine if I had to to the LP . I got the Phone call in Nov. that my Blood work came back fine, and that he didn't want a spinal. On Dec 15 th 2007 We went in to see him and he gave me the official DX. We talked about medicine and he felt that although my MS was mild he didn't want me to get worse then I am right now. and truthfully this past summer was pretty bad, I had developed a limp in my left leg and it was a hard summer. So we decided on the Avonex and Here I am .... I wish that I would have had that MRI 15 years ago It would be interesting to have it to compare to  now. I now know that the symptoms that I thought were from me getting the diabetes was really from the MS. And I wonder if The MS is what gave me the Diabetes it would seem that way. So here I am in this journey I am not a quitter I don't let Dr's push me around, I believe in being well informed about my condition and included in all decisions regarding my illness  MS or Diabetic .   This was my journey towards my DX. There is so much I had to leave out but this is the gist of it. And now begins the journey of treatment and living with it.
Cindi