I was diagnosed almost two years ago. Only recently am I doing anything about it I was in denial. So my Problems as I think they relate:
Nerve Pain, Neuropathy, Central neuropathic pain
Muscular Skelton Problems
Numbness, Loss of Sensation
Twitches, Shakes, Jerks, Involuntary Movements, Tonic Spasms
Memory Loss, Loss for/of Common Words
Depression, Bi-Polar, Personality Disorder, PTSD
My neurologist wants to start me on Betaseron, currently I am on currently taking Prednisone but it is only a 7 day supply. So I have to go on something and I am wondering if this neurologist has me on the right path or not. I have my doubts.
Every person with MS experiences it a little differently so there is no way to say for sure if this is the right path for you. A lot of time there is trial and error period with medications to determine what is going to be the best fit for you. Betasaron will not take away your current symptoms, this medication is designed to slow the progression of the disease, and while some individuals reports a decrease in their symptoms- this is not necessarily because of the medication but perhaps because the flare up they were expereinceing has gone in remission. This link takes you to our Disease Modifying Treatment brochure that compares the different medications and it might be useful for you to review: https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-The-MS-Disease-Modifying-Medications.pdf
MS Navigator Ashley
So why are you doubting the path?
There is a lot of stufff going on in your history. My guess is the doc his made this choice becasue it is the longest running drug for ms. I started on it in 1993 when there was nothing else. Also the side effects may be another choice. The side effects of betaseron are well documented while the others are not as long lived so that may be part of the issue, as to what you may be able to tolerate.
Bi-polar personality disorder and ptsd are the only symptoms that are not ms related, and hearing loss.
What is important is if you trust the md or if you have enough info to make a best guess choice.
Living wih ms is a game of trying to make yourself peaceful with what is, the more you stress the nerves the more they will revolt. My suggestion is for you to speak a lot about what is going on with you, so you hear yourself and others hear you. Relaxing is most important, every trick, discipline, and solution to give you the ability to relax is most important. Your muscles and nerves need to be as peaceful as they can be, soft muscles will eliminate much of the misery.
We are here to listen and sometimes comment, we dont judge too often. I am here with the biggest mouth and nose. But there are plenty of messages for you to read to understand what you are going through and how to cope with it all, and to win. We here want to win at the game of living with ms, so we will give you plenty of support. Remember, you want to win at this game and we want you to win too. maria
inpain, I have learned that relaxing the muscles is the most important relief about ms, it stops the muscles and nerves from freaking out.
Years ago I volunteered at a drug rehad in the Bronx where I learned about Primal Therapy. There, kids age 12 and 14, among others, were given a safe space to scream, yell and cry at the top of their lungs to release the primal pains(the internet has info, and there are books about the subject) that is stored in the body, all the unexperienced pains that the subconscious has locked away. Besides verbal abuse, I was whipped and beaten when I was a child, learning about primal therapy gave me the tools to cry for the child I was and what i went through. I was able to cry for that kid that I no longer was, that poor baby who had no tools to understand what was happening. I cried and i cried, yelled, screamed till my throat was sore, and then after time i also learned the value of forgiving them all, that it was enabling me to let go of all that poison stored in my body, it wasnt for them the forgiveness, it was for me, to free my body from all the emotional baggage attached to those years.
The greates thing a therapist told me was: it was okay for me to give myself permission to free myself from suffering!
Rollo May wrote a book called The Meaning of Anxiety. It took me three weeks to read after work and I wa uncomfortably anxious the whole time. Then Mel Brooks came out with the movie High Anxiety and laughed me through it in two hours. If you havent seen it, try it, it is a painless way to get through the therapy of anxiety.
In order to have soft muscles that are free of toxins we must experience all the pains we have not gone through, all the hurts we were not prepared to cope with when they happened, they are locked away inside us and must be let out. When they happened, we did not have the tools or knowledge to get through them at the time so we stored them away like rocks in our gut. We are so use to carrying them around we dont even see that they weigh a ton and are loading us down. Time to let them go, throw them away, and move on to a better life. There is no reason for an old lady of 70 to carry around the pains of a six year old kid, old news, just the experience of long ago best forgotten instead of carrying it around.
Create a safe space for you to let go of the pains of the past, let them out in the fresh air and then throw them away. You are no longer the person who went through them, that was a you from long ago, you are not there any more but you are carrying them like they are valueable. Celebrate that you can look at them now and cry for what you went through and be happy that you can move on to better things. Unless of course you need those pains and memories to validate who you are, which of course you do not. Free yourself from the suffer and get on with ahving a good life. A life where YOU no longer make it more difficult and painful, it is cheaper and easier than spending thousands of dollars and hours in therapy and on drugs trying to suppress the emotions you did not go through then, and you dont need to carry with you now.
This way, you will get to experience life with out tense muscles that are weighing you down all the time. You will feel younger, lighter and more at ease, even living with ms. And giggle too, then giggle some more so your face will light up the room. And if you are still having trouble getting through it, beat up a pillow.