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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


HI spcialk2. Im sorry I didnt get a chance to respond to you when you really needed someone- I do know how horrible that feels. So, Ill try to lend you some support now.
First of all, I have never heard of a doctor telling anyone to do research online. IN fact, I have heard hundreds of them say NOT TO, for the simple reason that although there is some good information out there on the web- there is much more bad info! It could both scare and depress you; and besides you didnt go to medical school (im assuming) so, are you supposed to understand half of what you read?? I know I wouldnt!
I am very recently diagnosed with MS, and very new to this, and also terrified, feeling depressed and in alot of pain- however I can honestly say that certain individuals here have made a difference. Communicating with people who understand your symptoms, and better yet, have a better handle on them then we do (and I include myself in that group) really helps. How long does it take to diagnose MS? Can be years....can be months...can be less. If you look at the facts there are only so many tests they can run...MRI's, Spinal Taps, are just a few..there are a handful of others. They look for the proteins, the legions, the "white" matter..and all of this adds up to a diagnosis. Of course there are so many other things which mask themselves as MS- Lyme disease, differnt neurological diseases, they are all very familiar. The only way to get a definaitve diagnosis is to have the tests done and see a specialist to intrpret them. Im in the middle of that myself. My Neuro is 99% sure of my diagnosis, but Ive had to wait months to see a MS Specialist in order to get the 100% diagnosis, and thus start any kind of treatment. So far, Ive had IV Therapy, which did absolutely nothing, and Ive started a drug called neruontin, but Ive only been on it 3 days- they say it takes a week or so to know if it will work. IM in pain! Im losing my mind with anxiety! My family is terrified with this preliminary diagnosis...but you know what? You deal with it. You have to. You can sit around and wait for an attack- or you can push forward and take the most proactive approach you can - which means seeing a doctor, forcing someone to listen- and asking qustions until you are satisified with the results.
You are not alone, Kris. I have numbnesss up and down my left arm (and legions on the right side of my brain supporting the reason) and I have had numerous spinal taps, tests, and been poked and prodded. Ive cried more than my share of tears. I have made myself sick with anxiety. And, I have realized that none of this did me any good- the only way that I feel even halfway normal is to do halfway normal things. Going out to see a movie is a good one- makes you forget for awhile....and trying to stay involved in anything you care about- for me, its college. Im an online student, who is definately struggling to keep up, my brain feels fried, but my fingers really are! This week, I looked into voice recognition softwear for my computer, with the hopes that next week I can buy it, start using it and learn how to "talk" my way thru my online courses....anything which uses the brain, and gives you something else to think about has to be good for us!!! Listen to me, the big cheerleader, check my posts, only a week ago, I was crying out exactly like you are...but, then again, a week ago, someone told me what I am telling you now. YOU CAN DO THIS. And, YOU ARE NOT ALONE IN THIS.
We all care about you...and we all know that there is nothing you can do alone- you really need the proper medical attention. If you arent finding it where you are- look elsewhere. Find it, its there...but it looks like you are going to have to be the one to reach out to it. Also, if you havent contacted some sort of MS referral network which specializes in a nursing team, you should..they might offer you suggestions on how to get yourself more help. Im sure no matter where you are, there is a free phone number to call...check your local hospital for help- just dont wait for it to come to you. PROACTIVE is the name of the game.
My heart goes out to you...and probably within the next week or so, Ill be the one posting up here begging for someone to give me some reassurance. It goes like that...hour by hour, your emotions are going to jump all over the place. The best thing I can tell you is you arent alone.
hugs to you.
nikki





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