When I was diagnosed with Multiple Sclerosis I knew nothing about it. Literally nothing--I thought I was one of "Jerry's Kids," embarrassing to admit but it shows how out-of-the-blue my diagnosis was for me. Frustrated by a lack of forthcoming answers to my many questions and being a voracious reader I had to do a lot of research for myself. I wanted the answers no matter how ugly they were and I felt that the guides for the newly diagnosed got me nowhere. My MS, right out of the gate, was so aggressive that I was beyond the attacks once-in-awhile and had about 5-6 within the first year. I wanted to know everything that I could about it and what it meant for me. This is a short list of the things nobody would tell me but I found out on my own. I will expand on each one in it's own post, I just wanted to list the things that I wanted to know and nobody wanted to tell me, yet I felt I should know. I know I am in the minority with the way my disease is progressing (thank God), but there are others out there who are having similar experiences and are probably as frustrated as me by a lack of forthright answers. So without further ado here is my short list of things nobody wants to tell you:
1. MSers are 7 times more likely to commit suicide than the average person. If you have not had a run-in with the black dog of depression you need to be very thankful--it is hell, and that is not even a strong enough word for it.
2. What's my prognosis? Nobody wants to tell you what your attacks and symptoms can tell you about your future. There is some information out there about the nature of your attacks and what they can mean for your future. I will go into this in a separate post because it is a lot of information; it can be scary but I would rather know what I am facing.
3. The down side to the DMDs. They do have some downsides, but you will never hear of any of them from a rep. from the company. Like with a higher dose of an interferon the higher risk of neutralizing antibodies and higher risk of depression. Also, Betaseron has the highest incident of neutralizing antibodies and Rebif puts you at a higher risk of depression. I'm not saying there is not a lot of good with these meds, I just want people to know all the facts to make the right choice for them. I also think it is good to know what the overall reduction rate is for each of these, because they all vary. Again, this is a post in itself, which I will do, I am just giving an overview right now, it being early still and having to get a little girl ready for school soon.
4. Mental/emotional problems associated with MS. They will tell you that it does not cause any changes in behavior or if they do tell you they will say it is rare. But studies show that atrophy (shrinkage) of the brain occurs in the early stages, and any disease that leaves scars on the brain is liable to have an effect on you and your thinking/behavior, especially in the frontal lobe. When I attempted suicide, even though I had been told that MS will not cause those kind of changes, they still did an MRI on the frontal lobe of my brain to see if I had a new lesion there that was effecting my moods.
5. Lifespan. Nobody wants to tell you about your lifespan. They will tell you that it is almost close to normal, which is true for the most part, it is slightly lower than normal. I'm sure you have heard that MS will not kill you, that it is very rare for someone to die from MS; this is true. But all the meds pumped into your body will tear it down and most MSers, when not taking matters into their own hands, die from complications due to the different meds put into us. Especially as the body gets older, when you damp down the immune system it makes you that much more susceptible to getting pneumonia or other life-threatening illnesses, hence you do not die from MS but from something else.
That is all I can think of right now, but will add more if I think of them. I am off to get my Tysabri done. Remember, Blindbeard loves you (big cheesy grin would go right here).