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Posted 3/3/2014 8:41 PM (GMT 0)
So I first had left-side numbness on Jan 21st of this year...I have been through all the heart tests (all ruled out any heart trouble)...I've had a CT scan & 3 MRIs, tons of blood work, & a lumbar puncture...was diagnosed after a 3 day hospital stay of steroids...officially on Feb 20th. So the diagnosis was quick...within one month...which I was called at work & told to drop everything after my first MRI & be admitted to the hospital for 3 days. Everything seemed urgent. Now that I'm officially diagnosed, & I decided immediately that I wanted to take medication,...it seems to be taking longer than expected. The neurologist told me on Feb 20th when we completed the form to be submitted to Shared Solutions that a nurse from Shared Solutions would be calling me within a week. That didn't happen...so called dr office & checked...nurse had just faxed it in that day. *really, it took a week to fax in a form that was already completed?? So was told to wait a few more days. A few more days was today...my insurance company still hasn't received the prior authorization from the dr office yet...so called them again. They just faxed it today....ugh. My question to anyone out there is: Why was it so urgent to get the diagnosis if they were going to piddle around with getting me the meds?? Maybe this process takes longer than the neurologist led me to believe....he said a couple days....its been a week and a half. I have read on this board that it takes 6 months for the medicine to even begin working? * I will be taking copaxone injections. So maybe it's not as urgent as I was led to believe???? Should I be worried & complaining/calling...or has it taken others a couple weeks or longer to get set up? Any info will be greatly appreciated :)
Posted 3/3/2014 10:32 PM (GMT 0)
Voodoodoll,

I don't know about urgent. MS meds are designed to help prevent future relapses, i.e., slow the disease down. They are not guaranteed to work by any means. Everyone progresses differently. Some people have MS for their whole life but it isn't discovered until after they die. Some people are not as lucky. Medication helps, but I don't think it is the determining factor for how you progress. I started on Copaxone too but was switched to Tysabri after less than a year due to a bad relapse.

I don't remember how long it took for me to get the meds, but your delays do not sound too bad (IMO). I've heard it takes 3 months for Copaxone to start working, but I really don't know for sure.

I don't mean to bring you down, but I don't want you to think the MS treatments are going to cure you--they won't.

Gretchen seems to be the most knowledgeable of us on this forum. Hopefully she can tell you more.

Good luck,
Frank
Posted 3/3/2014 10:41 PM (GMT 0)
Thanks Frank :) yeah, i know the meds aren't a sure thing to slow things down. I guess I just don't like that they scared me with the urgent tests & diagnosis to do nothing now lol. I'd at least like to be on the meds in case they work. I don't like doing nothing :( thanks for the response!
Posted 3/4/2014 12:41 AM (GMT 0)
Frank. I appreciate you posting. I am not sure I am all that knowledgable. I'm just here to try to help; like you. You always post very helpful advice. You have solid experience and what you share is very worthwhile.

Voodoo doll. I had nearly your same experience. I could not get my hands on copaxone fast enough! Just keep checking and asking. You have to be your own best advocate. Frank reported what I have heard as well. After 3 months, copaxone will start working. Between 6-8 months and you should be at full speed.

Seven months into my copaxone I had a bad flare. I decided not to switch meds because even on meds, you will occasionally flare. I've not been unhappy on copaxone. Over-all, my progression has been slow and manageable.

Keep us posted as to how you are doing. Let us know when you start the copaxone.
Posted 3/4/2014 1:22 AM (GMT 0)
Thanks Gretchen! I was told if I don't hear anything by Wednesday to call my neurologist's nurse again. I feel like I'm harassing them, but I just want to get started already :) I will keep you posted--thanks for the info.
Posted 3/4/2014 2:16 PM (GMT 0)
Once I got my box of copaxone, scheduling the shared solution nurse was a whole other issue. She couldn't make it and clouldn't make it. I finally gave up. I watched a few videos on how to give a sub-q shot and just did it.

I'd been looking a the blue box in my fridge for more than 2 weeks. When I told my doctor, he was not happy. He called shared solution and complained. Apparently that's the way to go. They will assign you a nurse who can get out to you quick for training.

Learn to do your shots both with the auto-inject tool and manually. You will feel more in charge and capable. I didn't care for the auto-inject way. I've prefer doing it manually (control issues?!).
Posted 3/4/2014 3:35 PM (GMT 0)
I've watched the videos of how to give the shot..but hopefully a nurse eventually shows up to train me LOL. I also think I want to do it manually--as of right now the idea of the auto-inject scares me more. We'll see though, I've never had to give myself a shot. I'm sure there will be a lot of cursing either way LOL.

Off the subject, I was told by my primary care physician to try to stay away from caffeine. Neurologist says I can have regular diet. So I stayed off caffeine for a couple weeks & was just dead tired. So over the weekend I bought some Folgers Half Caff to try. It wakes me up, but I think it also intensifies my numbness after I drink it. Does caffeine affect you that way?
Posted 3/4/2014 7:18 PM (GMT 0)
I have never heard the "stay off caffeine" advice. I'd never make it!!!! I need lots of caffeine to function! I drink tea and coffee every day.

I do have a modified diet. Some foods are "inflammatory". I feel way better being gluten and dairy free. You could google "low inflammation" foods.

I am with you! That auto-inject tool freaked me out. I ended up playing with it until I broke it; all before even receiving my copaxone. Haha.
Posted 3/4/2014 7:29 PM (GMT 0)
That's hilarious! I guess if the auto-inject pen is free I'll take it just in case...but I have no desire to use it.

I'll check out the low inflammation foods--as of right now coffee seems to be the only thing I notice that makes it worse. I need to pay more attention though I guess...I try to keep my mind off the numbness....seems if I think about it too much it seems worse also :) or maybe I'm just crazy LOL
Posted 3/16/2014 2:06 PM (GMT 0)
Have you master the shot deal?! How is it going??
Posted 3/17/2014 12:39 AM (GMT 0)
I just received my 1st shipment of Copaxone 2 days ago. the home nurse just left for vacation, so she is scheduled to come train me on the 25th. so still in waiting mode...
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