I can't believe I found this . Now all I have to do is try to get it posted.
For some reason I haven't been able to But I'm sure going to give it a try again.
I first wrote this back in March and thought I had lost it. With the changes they made lately I found this and thought I would post it again simply because not many were able to read it before it disappeared. So here it is....
I haven't been ignoring your request for me to explain my symptoms, I have been thinking about what I want to say and how I want to phrase it. I have to say that in the scope of things I have been very lucky. Multiple Sclerosis can be a devastating disease and fortunately so far I have only experienced minor problems. I have Relapsing Remitting MS which means that I can have problems that will last for days weeks or even months and slowly go away and I return to normal or close to that. My first symptom was back in the 80's some time between the birth of my two children. I was feeling an ache in my eye ball, I know it sounds funny but that's the best way to describe it. Shortly after that the center vision of my left eye be came hazy like there was a film over it. It was very scary and I went to see an Eye Dr. That same day. He check me out and told me that I had
Optic Neuritis which basically means that the nerve that tells me what I am looking at, was inflamed and was sending my brain distorted vision. Well something like that any way. He put me on oral steroids which helped decrease the swelling and eventually my vision returned to normal. At that time I was told that it was nothing to worry about and that it just happens sometimes. Well it happened maybe 4 or 5 more times, the second time the doctor told me that not to worry it should go away on it's own. So when it happened the forth time I did go in and saw a different Dr. That told me that yes I should be on steroids and that if I ever had any numbness of tingling in my extremities I should see a neurologist, because it was possible that I could have MS, but not to worry unless that happened. I tried not to think of any thing like that being possible. But one day I did have some numbness in my fingers and arm up to my elbow. I was so scared. I went to see the Dr. In town who sent me to GF to see a neurologist. Of course it took a good month to get in to see him and by the time I did most of the symptoms were gone. I told him that and he just said well we will do some test to see what's going on. Well they poke me with pins and sent electrical charges though my body and it jumped and wiggled when it was suppose to and after all that he had Dwight and I go in to his office and he said, Well I'm not sure what your problem was but I can tell you that you DON'T have MS!! I was so happy and relieved at the same time. I'm not sure if Dwight even understood what he was talking about. I explained to him to the best of my knowledge at that time, what it was and he didn't even realize that was why we were there. I guess we were just happy to find out that I didn't have MS.
If only that was where my story ended all would be well in my world. But I guess it was another couple of years went by and one day I started feeling numbness in my toes on the left foot. I just kind of ignored it as long as I could, but the numbness started to slowly creep up my leg. It went all the way up to my hip. It isn't really numbness as much as a feeling that my leg was covered in cotton, I could feel touch it just didn't feel like a direct touch. I looked up different things wondering what could be happening to me because I had been told by a neurologist that I didn't have MS. I finally went to see Dr. Rayer he sent me to see another neurologist in Fargo, Dr. Garnaas, I really like her. She did a spinal tap and ordered an MRI which I later learned it was the only way to determine if you have MS. Even before the results of the MRI she told me she was sure that I had MS just by my symptoms. She also explained that the MRI had only recently been accepted as a way to diagnosis MS. It shows up on the MRI in the form of white spots on the brain. I will never forget the shock I felt! I said that that the other Dr had told me that I
absolutely didn't have MS now you are telling me I do, how can that be! She explained the whole MRI thing to me. Well, I started to cry,( I cried all the way home from Fargo) how could this be happening to me. Dr. Garnaas explained to me that I had the best kind which is the Relapsing Remitting MS
http://www.nationalmssociety.org/sourcebook-progressivems.asp and not the Progressive MS which is something you can see because they are in wheel chairs, have canes or some are even bed ridden unable to do the smallest things for themselves. That is what most people think of when they hear about someone that has MS. With the progressive MS when get you get symptoms that are more sever and they very seldom get better, they usually get worse. No two people have the same symptoms, as you may have seen on the web site. It can effect any part of your body at any time and you never know when or what's going to happen to you. That is why I feel lucky. That I have the mildest form and for the most part I have returned to normal after I have had problems. Sure my legs get tired sooner then they use to, and I do suffer from depression and I take Wellbutrin as do thousands of other people that don't have MS. When my feet get hot they start to feel numb and I take off my shoes and they feel better, I can live with that. My biggest concern has been what is happening to my mind. The cognitive problems that I have. I went to a specialist that tested my memory, She explained that I the reason that I sometime use the wrong words when I'm talking about one thing, like the stove for instance but the word refrigerator will come out instead of stove I can't help it. I know I have screwed up as soon as the word comes out of my mouth. That my MS reminding me it's still with me. When I'm talking about something and I can't remember a word, or a name of someone or something, I just can't come up with the word I want to use, I know it's there lost in my head some where and I just can't find it, (she called it the tip of the tongue syndrome) that can be very frustrating for me and for people that are listening to me. But that's just the way I am now and I try to laugh it off. But it also happens to people that don't have MS so I guess that's just life. I've been told I can't blame all my health problems on MS so I try not to.
I was diagnoses in March 1998 and I began using Copaxone
http://www.nationalmssociety.org/Meds-GlatiramerAcetate_m.asp in March of 1999. Which is a daily injection that I give to myself, I was a LPN before I worked at the school so the needles never bothered me. I had to get help with the hip ones and depended Dwight to do them Alicia even did it a few times. How many of you would trust your spouse with a needle? He did a pretty good job I think they were more scared than I was. Later in in 2000, The drug company came out with an injector it made it a lot easier for me to do all my shots. Since I started the shots I have only had 2 serious relapses and eventually returned to normal (what ever that is). That was shortly after I started the medication. So I figure the medication is working for me. Thankfully we have insurance and it pays for 70% of it and I have applied for assistance with a program called NORD (National Organization of Rare Disorders) they pick up the rest. Without that, we would never be able to afford it. When I first started it was costing around $10,000 a year. The price frequently goes up, last year it went up 3 or 4 times, this year if it
doesn't go up again it will cost $17,280.00. Yeah, that's not an MS moment, that's what it really cost. It's a $48. a day habit. It's expensive but they have tested it and they say it works. So as long as it is being paid for I will keep taking it. It takes me about a month to apply for the NORD assistance program, they want to know every thing we earn and where every penny goes, but as you can see it is worth the time. Sometimes I wonder if I should keep taking it. If I ever stopped getting the financial help it would be hard for me to see all that money going into my body, But hopefully I won't have to make that decision any time soon. Well there it is, maybe more than you wanted to know maybe not enough. But I'm tired of writhing about it. So if you got through this whole post... Wow you must be bored by now anyway.
Can you believe how fast they all grow, you wait and see. Don't blink or you will miss something.
