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Welcome to our little group but sorry you need to be here. Your Ha-Ha moment is not unusual after diagnosis. A lot of people actually feel relieve because the diagnostic process can take so long.
The most important thing right now is to find a neuro or MS care center that will work with you on a second opinion and then on a treatment plan .Once that has been establised then you can take a deep breath and assess where you are.
As you say yourself take it day by day for now, do not be afraid to ask for help as "pushing trough" can cause more promblems in the long run.
Come back and let us know how you are doing fell free to ask,vent tell a funny story or joke.
Hug that young fellow and "breath"
Rory
I mis-spelt that by "pushing through" I mean trying to keep going when we know we should take a break or have a nap. We all do it once in awhile but it can cause promblems in the long run. I know this will not be easy with a three year old in the family.
As to treatments the more establised ones are what we call the CRAB's .All are injections so the can seem scary. Copoxane Rebif Avonex and Betaseron the have been around for fifteen plus years and there track record is pretty well establised .
Of these Copaxone is the best tolerated with fewest side effects but it an every day injection under the skin.
Rebif and Betaseron are from a class of drug called an interferon
each is an every other day injection under the skin.
Avonex is another interferon injected once a week into a muscle so there is a longer needle needed allthough the have a new system just launched which hopefully will be easier to handle.
All the interferons come with side effects including flu like symptoms after the shot and severe depression and possibly liver damge so the have to be monitered very carefully. Many people here say the cannot give up a day of the week to the flu like symptoms when the have a small child.
Avonex is the one I am on since my diagnosis ten years ago and I have been very lucky in that I have no promblems with side effects.
There is a once a month infusion called Tysabri and there has been an pill called Gilenya released recently with more to come . I do not know much about these so hopefully your neuro or someone else on here will explain more.
Remember this choice is yours to make or if you choose not to treat at all and do not let anyone bully you into taking a treatment that does not suit you.
Sorry so long
Rory
No apologies Rory, I really appreciate all the information and I would rather hear it all from someone who had to make all of these decisions themselves before. That is why I joined this community because hearing peoples personal experiences, and not just going off of what the dr.s have to say, is enlightening. All of those treatments sound very fun, and I know they are created to help, but I am kind of leaning toward no treatments. I don't know yet and all of the description you have provided me with of these treatments will help me choose better once I do decide to. I know that everyone's dealings, symptoms and pain are different and some of the stories I have read of others that have MS really hurts my heart. The one thing that is keeping me from losing my head about all of this is that this disease is not unto death and it could be something much worse that what it is. I am grateful for life and if I have to live life with MS, with or without treatments, then I will live it to the best of my ability.
I too am recently diagnosed - June 1, 2012. I was overwhelmed at first just trying to deal with the news and with the extreme symptoms of my first big flare. Eventually, my body settled down and I became accustomed to a 'new normal.'
I recently started my third month of Rebif treatment and so far so good. The people at MS Lifelines have been so good to me. They call periodically and seem to care about me.
My biggest issue of late has been dealing with the large group of medical professionals that are now part of my life: Primary care Dr,, Neurologist, Spine specialist, physical therapist, and now Neuropsychologist. I told my neurologist that I felt like I was being pulled in too may directions and he gave me what I feel is some good advice. He said that my primary care dr is my chef! He knows me best and I can see him quickly if I need to. The Neuro is the sous chef and all the other doctors support him and the chef! As weird as this sounds, it really helped me.
Recently, I started going to therapy to learn biofeedback to deal with pain that comes from my spine. A lesion is mimicking a bulging disk and created some nerve issues in my arms and shoulder.
I've been a fighter (not literally) all my life and I sometimes get angry that I cannot fight some of these issues. Oh, I can fight but the fight is not healthy and eventually doesn't get me to a calm place. I have to learn to finesse my way through all these issues. I never thought I was the type to need therapy but my Neuropsychologist have helped me tremendously!
Let me know if I can help you. My sister in law has MS too and she has been great to talk to. Sometimes you just need someone who understands where you are coming from.
Oh, I find this helpful too: I try to write down three things I am thankful for each day and one fun thing that I've done. I keeps me focused on the good things in my life!
Take care,
Nancy
Wishing you the best,
Todd
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