Wanted to post an update
 

It's been a little bit since I posted a true update, it's been an emotional rollarcoster but I'm ok now with that right now to do this thread. I started Rebif last Friday. So I take it Mon Wed Fri schedule, three times a week. However, on Monday, my waist began to feel like someone has been squeezing it tightly, and by Wednesday I ended up going to the ER. They gave me some meds that helped slightly, but now is early Saturday morning and I am still in pain. On Friday, my doc finally contacted my mother, and told me to stay off Rebif for a couple of weeks to see if the pain would stop, but then again my question to him is why so long to wait in pain? It seems he has been prolonging my pain ever since we first started seeing him. So Monday I am going to see my main doctor again to be refered to a closer neurologist for a second opinion, and hopefully some relief. On Friday also, I noticed that the squeezing pain has starting going up my lower back and spine region. It's really beginning to hurt a lot like it did when I went to the ER on Wednesday. At least on Thursday, the pain had become tolarable, but you know how you hurt so bad that you become numb sometimes until it just becomes that worse again that you feel it coming back on? Also, my mother has told me that she has noticed tremendously this week that I seem to move slower, my speech is slower and sluggish. There are a lot of questions to be answered here, and hopefully I can find some relief soon. Thank you all for being here for me :)

Has your Neuro suggested IV Solumedrol? It sound like you are
having an exacerbation. The IV steroids could help to shorten
your attack. Rebif does not stop an attack. Your Doc may have
been a little quick on the trigger with the Rebif.

I would do what he says and stop the Rebif and ask him about
Solumedro or maybe ACTH(Acthar Gel) .

Feel better soon..:hug::hug:

That's just it. He hasn't suggested anything, but waiting just so he can get us out of his hands which that makes me upset. MY Main doctor is the best doctor in the world, but never treated me like my neurologist has. All my neurologist said to do for the third or fourth time was wait wait wait. My main doctor did leave a message with my mother, and will be contacting her either today or Monday as it was late when the message was sent.

dear skywalker,

i wish i could address your sx's but i don't have enuf knowledge about it.
i think it's a great idea to get another opinion and see another dr.
never stay with a dr if they don't listen and validate you, or you're not getting the help you need. especially if you're dealing with a serious illness like MS.

i hope you see this new dr soon.

you can always use the ER as a backup if needed. not ideal but the option is there. stay in contact with your pcp too for help. let us know how you are.

I am sorry about your pain, awful!
topamax can cause you side effects. It can cause a mental fogging, memory issues, not sure how good it is at treating depression, why not ask for an antidepressant instead????? I post in the bipolar forum if you would like to post there. and answered you in the weight loss forum.
Welcome to neuro talk, as you can see...alot of good folks in the same boat.
I wish you much luck in your journeys.
bizi

It doesn't sound to me like your neurologist did anything wrong. There is a very good chance this was not caused by the Rebif and to make quick changes with medication regimens unless it is an acute allergic type reaction is often not the best strategy, imo.

Just guessing of course but keep in mind that with MS there are very few sure answers and even fewer quick fixes. :(

Glad to hear you'll follow up with a second opinion. My concern, is why no one seems to be answering why you are having such pain. Keep us posted.

It does sound like you are having a flare and rebif is not meant to improve your pain.

What you are describing sounds like MS hug. If you search it, there are alot of posts on it. Steroids may help you improve if you are having a flare and a medication such as baclofen, neurontin, or zanaflex may help a bit with the pain.

I have had the same problems with my back and rib cage ever since I was first dx. It is worse sometimes than others and can really painful. Hope you can get some reflief soon. Sometimes an ice pack helps me cope a bit with the pain. Others find heat is helpful to a degree.

this is just so depressing, because I can't seem to go anywhere or do anything because you can't get help without money or insurance. im still filling out paperwork for disability and i do have a great attorney, but this slow process is just getting to me. and it seems like you are so hopeless, and helpless and people just watch on and won't do a single thing because they cant do anything because they dont have or dont want to spend the money on trying to get me more help, all i wanna is just cry

that doesn't help