Forums


General Discussion

Newly Diagnosed and so confused

  • By willikia

    I was diagnosed on 10/9/13 due to worsening Migraines that sent me to a Neurologist. I have had all of the MRI’s and Lumbar Puncture and now go to the doctor on 10/30/13 to agree on treatment. I know that I want to start with Tecfidera because it is a pill. I am wondering that if I get symptoms that render me paralyzed, even it temporary, or loss of sight is this something that could happen while I am driving? The only thing I know about MS is that there are more questions than answers.

    Any advice would be very much appreciated.

    Willikia

    Reply Created with Sketch. reply
  • By But You Look So Well

    Willikia, I’m amazed that nobody answered your question back in 2013. Something tells me you probably got some good advice from your doctor or your physical therapist and didn’t try coming back here. I don’t blame you. I remember when I got MS back in 1978, nobody knew anything, and it was very frustrating. But I did figure out that I was going to be my own best friend when it came to dealing with the disease. When I started out with all kinds of symptoms, I was mostly very amused. When my hand would float off all by itself when I wanted to do something with it, I would gigle a lot. Fortunately, even though I had eye trouble, my eye doctor helped me deal with it, and when I had urinary trouble, my neuro-urologist REALLY helped me deal with it. I’ve had lots of symptoms, and lots of difficulties, but I have learned one thing: I’ve got MS, but MS doesn’t have me. No matter what it throws at me, there is somebody or something that can help. The funniest thing that ever happened was that when my neurologist insisted that I go on treatment, I refused because I was scared of needles. He didn’t ask me why I was scared of needles, he just accepted my answer. Fortunately, my PCP knows not to ask my permission before giving me a shot. His nurse told me that she was going to give me a pneumonia shot one day. Before I knew it, she was swabbing my arm and doing something I coulnd’t quite figure out. I asked her fearfully when she was going to give me the shot, and she laughed. “I already gave you the pneumonia shot, a flu shot and I updated your tetanus.” I was amazed — “SHOW ME THAT NEEDLE!” I demanded, and she did. It was this tiny little fine needle, nothing like the old two inch half-inch thick needles I remembered from my youth. Now I don’t even think about shots or needles or anything. My daily shot has made me pretty indifferent to needles. The needle is still sharp, but it doesn’t hurt, and it does me a world of good.

    I think about the treatments I have recieved back in the day, and even though they would sideline me for a period of time, days, weeks, months, whatever, IT WOULD PASS. There was always something I could do that would affect my outcome.

    I know I am lucky. Not everybody responds to treatment as well as I have been able to do. I don’t think it even has anything to do with my effort or my success. I just happened to be standing in the right place at the right time to do well with Copaxone. But there are a lot of things that doctors and nurses and physical therapists can do and that you can participate in. You do not have to be a victim of MS. You can recover to a certain extent, and you can learn to live well with MS. Don’t be scared. There can’t be any certainty with this disease, but that doesn’t mean you can’t try to learn to live with it. Do what you can, and get informatoin from all the great resources there are out there. Go to the conferences in your area that are offered by your local MS chapter. Talk to your doctor and the nurses and the physical therapists. Don’t ever give up. I know it sounds like nobody heard you the first time you asked this question, but I heard you. I’m with you. You are not alone, and if it feels like that, come back here and ask some more. I’ll be listening for you.

    Reply Created with Sketch. reply
  • By Holly

    I, too, have been recently diagnosed and have begun Rebif injections three times a week. I finally understand all these bizarre symptoms I have had over the years it took me to finally find out what was wrong with me! I have the best neurologist in the State of Alabama, if not the nation, so I am very comfortable with him. It was actually a relief to finally KNOW what I had, and that there are tools to fight it. I just take every day as it comes, do what I can, and let the rough end drag. My family does not comprehend the extent of this disease yet, so I am really just going it on my own. I pray that none of them has to live one day the way I feel. It is such a blessing to have forums like this to let others know that they aren’t going through this by themselves! There’s a lot of us out here, and together, we can whip this thing!

    Reply Created with Sketch. reply