Hello Everyone! This is my first post on HealingWell.com. It’s awesome to see so many supportive people.
Here is my quick story:
Dx June 05 ~Optic Neuritis Age 28 (now 30)
Pregnant August - May 06 (never felt better in my life even with the relentless vomiting for 9 months) Beautiful Baby BOY
Relapse June 06 dx through base like MRI Started Avonex - My body did not fair well on it. I was laid up for days only to then inject right as I was coming out of it. I've heard that it works wonders for some, so if you are on Avonex don't let my comments derail your treatment. I was on it for nearly 6 months and called it a QoL issue. My marriage was suffering, my new baby, depression etc.
November 06 - weakness in hands and stiffness in wrists
December 06 - Follow up MRI ~ Relapsed Doctor said "If you want we can do IV therapy" (that is a whole other thread of discussion)
January 07 - Right and Left Leg didn't work right, tight joints and weakness
There are times when I do not think clearly. Say things that do not make sense. Just cannot think off the top of my head and I can not tell you how long it took me to write this.
I am also on Provigil for fatigue. What do you guys think of that? Does it work for you? Sometimes it does while other times I still want a long nap. I try to do Yoga for flexibility but the cold air makes it had to accomplish. Not to mention Logan (8 months) is way too active to watch Mamma do Yoga.
NOW here is my decision: I don't want to take Copaxone, the Avonex injections have put the fear of God into me. Doctors said that I definitely need to be on something and that they would be fine by putting me on Tysabri considering the amount of relapses I've had in the short amount of time and that I should "look in to it on the Nation MS to see if I want to go on it" (ya, another thread for another time of why my doctor does not want to take the time to explain things to me) My relapses are not always complete recoveries. I would love to just go in and have an hour IV every month. Too good to be true?
If you are on it, how is it going? How do you feel? What do you like and what do you not like? Just give me the run down.
What have you heard that is good and what is bad. I’ve read about the PML… and also heard that sense its been back on the market (6 months) that nobody has had any brain diseases but its too short of time to really know for sure.
So what do you all think? I don't even know if I am asking the right questions.
2. New doctor? I don't like that she puts the decisions on my like I've been to med school. It’s so frustrating to talk to her. Some things she will treat while other things she will not even though they are so similar. I am so confused. I can’t even go there about her right now.
Anyway I am thankful if you have gotten this far in reading my post. Any advice will be greatly appreciated and hopefully once I know and learn more I will be able to return the favor to someone.
Thank you and have a wonderful evening.
These are some random thoughts, not necessarily in any order of importance:
Why don't you want to try the Copaxone? Unlike Avonex, Betaseron and Rebif, Copaxone is NOT an interferon, and many people use it without any side effects. Yes, it is a daily injection, but once you learn how to do that, it doesn't seem to be much of an issue. The main side effect -- a shortness of breath about 15 minutes after the injection -- doesn't seem to happen to every one, and certainly not every time.
If I were in your situation -- scared of the interferons (Avonex) and faced with Tysabri -- I'd certainly try Copaxone, first. The Tysabri does show promise in some folks, but after the brain disease episodes, I'd be putting that as a "last resort".
I can't speak about the IV therapy. That is a "new treatment" to me. I've had MS for a very long time, have been on Betaseron for the last 13 years or so, and am doing OK with it, so haven't explored the IV. But I don't think it's as simple as: "Do the treatment once a month (or whatever the cycle is), and you're fine." My experience with MS is what you describe: have an exacerbation; recover from some of them, but have residual symptoms that remain between them -- the most common being fatigue, weakness in limbs (for me it was the legs, primarily), numbness, tingling.
As for your doctor: I'd hate to be a doctor these days. Seems like patients come with two schools of thought: 1) Tell me, doctor, what you want me to do, and I'll do it. or 2) DON'T tell me what to do! I've done research on the internet and here's what I want to do. Support me!
It sounds like your doctor is trying for a middle ground: "Here's what I recommend, but you should do some reading and research and if you're comfortable with that, let's do it." You've had a bad experience with Avonex, and apparently told her you don't want to do Copaxone, so she's giving you the alternatives, and saying, "OK, then, which of these would you want to try?"
Welcome to the board! I hope u'll find this as great a place as we all have and will feel u can ask any questions u'd like.
Uppitycats did a great job answering and responding to u'r questions. I could only add that i agree on the Copaxone trial. Many here are using Copaxone and doing well with it. As well, i'd suggest u hang onto u'r doc at least for now. It sounds like she's suggesting appropriate care for u. If u continue to feel u'r not being treated properly, then by all means try someone new, but at least let her try to work out the CRAB's sitution for u and see some success with her. I think these questions u'r asking can be solved by following her direction. I imagine there's possibly more to the history with her than u were able to tell us here, but from what u said it sounds like she's trying. Yes, they (the docs) do put a lot of decisions on the patient...expecting us to understand and be able to make those decisions. I think in this day and time they've become accustomed to us being research bugs and just expect that of us. In my very first neuro appt my own neuro told me about some different types of mirgraines and said 'u can look this up on the internet and see the differences', meaning, they expect us to follow up.It's almost like second nature with most folks now and i suppose that's why it's assumed by them. That said, no it doesn't seem right that u may need to do u'r homework on this u'rself, but if not u, who?? U are the only one who can be in control of u'r care...shouldn't u know?
I'm so glad u found this site and hope u'll ask lots of questions and feel comfortable with us all. This is a great site with wonderful people who all understand u'r situation. We'll all be more than happy to help as much as we can. Welcome again!
While I am sure Optic Neuritis is different for everyone there are some common threads as Uppitycats mentioned
However in my experience I had blood shot eyes initially for at least a week or two. Then one day, after a hot shower, I was putting makeup on my eye. I closed one to apply on the other and I could not see my eye. After a while it became slightly painful, like pain would be with a sinus infection around your eyes, when my body temp increased and my sight was wavy, gray, kind of like looking through foggy glass. Also when watching TV my optic nerve could not keep up with the movement and when I read I could see the individual words but I had to read slowly so that my eye could focus enough to see. Does that make sense?
When Optic Neuritis happened to me I lost vision in different areas of my eye which was determined in a field vision test. There were several places in my eye that were blind so when you see a line of letters like
A B C D I may not see the B but I saw the other letters.
My eyes now get a little hazy when tired or too hot and very little pain if any at all. Hope that helps. Best of luck to you. Why do you think you might get this?