Odd coincidence, or maybe divine intervention?

[hbananas]

At my small group meeting in church this morning, we had a new person come with a friend.  She is the nurse you get called by if you are having trouble or questions with Copaxone.  She is on call all night long, and she gets to work from her home, since it's all phone.  Of course, she gets her paycheck from a drug company, but she couldn't stress enough how important it to get on the DMDs right away, if it turns out that I do have MS.  She asked me about my symptoms.  She also stressed the importance of going to an MS specialist.  She also said that most RRMS people stay that way for about 10 years, and then they start going SPMS.  I hadn't heard that.  Maybe that was before the DMDs came to be?  I hope so.

Speaking of the CRAB drugs, I'm wondering if any of you diagnosed people are on Avonex.  If a person has to give themselves a shot and experience flu-like symptoms from it, wouln't it be easier to put up with it once a week, instead of more often?  Or is it really, really hard to give yourself an intramuscular injection?

I'm seeing a neuro-opthalmologist tomorrow.  He called Saturday morning to say "I haven't received any paperwork about you."  Which is weird, because I called his office Thursday and asked if I was supposed to get the ball rolling on getting things to him.  They said he'd get stuff later, after he saw me.  Anyway, I'm glad he called, because he'll be able to request faxed records from my neuro tomorrow morning before he sees me in the afternoon.  I assume that will include the report from my newest MRIs and maybe even my SSER, which I haven't seen yet.  Maybe I'll get a clue from him.  My follow-up appointment with the MS specialist isn't until Halloween.  I've been to regular opthalmologists twice, 9-10 years ago when I first had the weird spot appear in my right eye.  They said I was having migraines without the headache back then.  This should be interesting.

[GrannyJo6]

Yeah, it sounds like one of those God things! I am on Avonex having been told the same thing Lulu was - get on something now! No waiting another minute! I chose Avonex because of the once a week dosing. My first dose was done by the neuro in his office and he started me off on only 1/4 of the dosage, then 1/2 the next week, 3/4 and then the fourth dose was a full one. It wasn't too bad to do myself. Back then you had to mix the stuff before you gave the shot and now it is all premixed and ready to go! I think I sat there for half an hour worrying that I didn't have it mixed right and what if, what if, what if? Then I took the plunge (lol - pun intended!) and haven't looked back! It really isn't hard at all once you get over the first one! I have been fortunate in that I don't often have side effects. One of the reasons he started me out slow was to let my body get used to it to reduce the side effects. I take my shot on Saturday nights and this morning was the first time in a long time that I had any sort of reaction and that was just a little achey. Took 2 Advil and off to church. Everyone is different of course, and you will probably get all kinds of different responses! My husband is very supportive and reminds me it is shot night and did I take it out of the fridge yet? He can't stand to watch, so if I ever couldn't do it myself, I would have to have someone else do it! He would pass out! Let us know which you choose, and how it goes! grannyJo

[essdipity]

Hi, long time no 'talk to'!

About giving shots-- It boils down to you do what you have to do. When it was clear I just couldn't tolerate Copaxone, I then had the choice of Avonex or Rebif. Few neuros seem to want to help you decide, and mine sure wouldn't. So just based on the idea that I'd rather have flu symptoms once a week than 3, I picked Avonex. For me it has been so much better than dealing with Copaxone every day. I have learned to do it at night, to pre-medicate with Aleve (long-lasting), and to take a sleep med, and that way I can minimize the flu stuff. I'm just very lucky this works well for me.

The only hard part is the deep injection I have to do. It doesn't hurt at all, it's just the idea. So I tell myself to go ahead and do it, and it's all over in about 10 seconds.

What works for me may not work for you. Just remember that you're not locked into a med, you can switch if need be. I hope you get a diagnosis soon if you have MS. The woman at your church is right that starting a DMD as soon as possible is important.

ess

[MCBCON]

Was there an devine intervetion in somehow making it possible for those of us with out drug coverage getting some of those DMDs?  To me that would be devine.

[Lulu54]

I would love to work from home and get paid to talk on the phone - I would never have to get dressed!  That would be great.

I haven't called the copaxone hotline yet, but my time is probably coming.  I am only on day 10 of injections.  

It sounds like she repeated the same thing my MS neuro said at the time of my diagnosis  - he didn't even want to discuss it.  He said "going on drugs is not an option for you... we just have to decide which one."  

I am thinking that he tells all of his patients that instead of having a c rap shoot roll of the dice whether a lesion is going to advance and hit something really important.  

Good luck with the opthamologist - I hope your records beat you there.

Be well,
Lulu