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

OK then, sorry.

:grouphug:

I need answers, not a therapy session. I went to a therapy session three times, where all I did was sat and talked for an hour with no feedback. IF this forum is going to be the same thing, then I should leave and find somewhere else.

All we can do here is offer moral support and listen and try to offer advice. I wish we could do more but what more could we possibly do? I can totally empathize with what you are going through. If I were your parent I could personally take charge, but even then I don't know how much I could do.

You have to go through the system and wait for all of the steps just like all of us had to do. We can't make it go any faster for you, as much as we would like to help you. Try not to stress out if you can. :hug:

Eric, I hope your anger with us is from frustration. We aren't doctors, and don't play doctor. Maybe you are looking for useful suggestions rather than commiseration? You are getting suggestions, but here's another ~ since you have no money or insurance how about asking for a referral to a teaching hospital, a University Medical Center? They usually offer big discounts.

For example, when I was in the diagnosis process I was in your situation; no money and no insurance. The one neuro I saw (and paid full fare to see) referred me to a UMC that was about 2 hours away. I applied for received a 90% discount.

Sounds like you need a neuro who will act on your problem, not wait. Might as well be one you might can afford.

I'm not really sure what you expect from anyone on this forum or any other. We are simply a group of people who are trying to deal and cope with the same disease.

No one here is a Doctor or even claiming to be a Doctor. It would be remiss of anyone to start handing out medical advice since your symptoms and the management of MS is between you and your Neurologist. If you are not happy with your Neurologist then please look for a new one.

We can offer suggestions, which may or may not help, but if you don't want to hear or listen I am not sure what the point is :confused:

Pain issues are very common in MS:
http://www.nationalmssociety.org/abo...ain/index.aspx

Managing MS pain:
http://www.nationalmssociety.org/liv...ain/index.aspx

If your parent(s) have healthcare you can still be covered under their health insurance until you are 26 years old:

http://www.dol.gov/ebsa/faqs/faq-dependentcoverage.html

http://www.hhs.gov/news/press/2012pr...20120619b.html

if you call 1-800-FIGHT MS you will be able to find your local MS Society.
they might be able to give you referral info for someone in your financial circumstances.

try to deal with 1 thing and 1 day at a time while still being your own best
advocate. don't give up. ask Q's of lots of people and you might be steered towards some help. it's called networking.

lots of us may have suggestions. most of them might not work out, but we'll do our best to help you.

Just realized I called you the wrong name. I'm sorry! :o

Is SkyWalker in Canada? If, so, what other links to financial assistance for Canadian MSers, are available?

I have an MS issues of my own, that doesn't have any answers. Sucks, it's fainting/passing out/seeing stars in a hot shower. My bloodwork, shows I am healthy...UGH!!! Seriously, there's jack-squat out there. Grrrrr....

And group therapy...yeah, I personally, keep my therapy talk to psyche central, but yeah....I hear ya...not much out there. Call the NURSES!! Maybe they can give answers to this terrible disease!!

His location is Georgia...