I am going to break up my blogs into chapter like form until I get to the present. We all had a beginning and here is mine.
It started out as unusual fatigue, a worsening to summer heat and limping if I walked too much. Then it went to the little toes on my left foot feeling numb and a leg that was getting very uncomfortable feelings in it...kind of a numb prickly feeling running up the back of my leg. Over time I started to have tonic seizures that would make my whole body go numb and I would crumble to the floor.
For six years I kept going to one doctor after another and was told a lot of different things and not getting anywhere. Finally my boss said "I really think you should see someone for your back again," for she thought (like I did) that it was a pinched nerve or something. I did have back problems, so that seemed reasonable. I went to see my doctor and he ran some tests. He said, "Well, your back is worse, but that is not it." He then gave a slip to me to see a neurologist. I told him I thought that neurologists only dealt with mental patients and that I was sure I wasn't crazy. Then he explained to me what a neurologist was and what one could do for me.
So I went to this neurologist and my life changed. From the beginning I did not like this doctor. He was rude, ill mannered, impatient, very controlling, and showed no courtesy or respect. He did an extensive MS exam and then had me answer a ton of questions about my life. I must have been in his office for 2 hours. When he was done he handed me a paper to take up to the front desk, and on it was the name of six diseases that he wanted me tested for. I had heard of only one of them before and oddly that was MS. I told myself that wasn’t what it was at all and I didn’t worry.
About 6 weeks went by getting all the tests done and the results back to him. It was time for my second visit and in I went. When it was my turn, he came out to get me and said right away WHY didn’t you bring your husband with you? I told him no one said to do that! By now sheer terror was going thru me! In his office he started to go through the pile of results and saying a lot of medical things I knew nothing about or what he meant. Finally he told me that I had a demyelinating disease. I still had no clue what he was talking about and I told him so. He was getting irritated with me and I was upset. Finally it was I who had to drag it out of him...what did I have exactly? He then blurted out "You have MS, there is no cure and no real treatment at this time." I was stunned and in a minor state of shock. He then tossed a MS book at me and said go home and read this (but bring the book back) and at our next visit if you have any questions we will go over them. He was completely devoid of any comfort!
I left and got into my car and just sobbed. Next thing I knew I was home and had no recollection of how I got there but all seemed OK, meaning I didn’t hit anything on the way home. I went inside, sat down and looked over the book and just kept saying NO WAY NO WAY this is just not me. Finally my husband came home and I told him and he just said well, now you at least know what is wrong. He had to go to work and left me standing there in tears. Up till that time that was the worst day in my life. The MS journey had begun and what an interesting trip it has been, albeit the rough times too.
For all who read this keep in mind that was 23yrs ago and A LOT has changed for the better since then. I was 48 when I was diagnosed and am 71 now.
Next Blog will be about "After the Diagnosis"
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Important Safety Information
Before beginning treatment, you should discuss the potential benefits and risks associated with Rebif with your healthcare provider.
Rebif can cause serious side effects. Tell your healthcare provider right away if you have any of the symptoms listed below while taking Rebif.
Rebif will not cure your MS but may decrease the number of flare-ups of the disease and slow the occurrence of some of the physical disability that is common in people with MS.
Do not take Rebif if you are allergic to interferon beta, human albumin, or any of the ingredients in Rebif.
Before you take Rebif, tell your healthcare provider if you have or have had any of the following conditions:
Tell your healthcare provider about all medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements.
The most common side effects of Rebif include:
Tell your healthcare provider if you have any side effect that bothers you or that does not go away.
These are not all the possible side effects of Rebif. For more information, ask your healthcare provider or pharmacist.
Call your doctor for medical advice about side effects.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.
Rebif is used to treat relapsing forms of MS to decrease the frequency of relapses and delay the occurrence of some of the physical disability that is common in people with MS.