I have an appt with my MS nurse on 1/24. It will be roughly the 3 month point after starting Avonex. So I assume they want to know how that's going.

Will that be all? Are MRIs or other tests performed? My last appt was in September, and I was so shocked at my diagnosis then that I barely remember it.

I never had an LP or evoked potentials; my MRIs were enough. Should I expect that?

I recently started journaling all my symptoms and side effects, and I plan to bring that. I don't want this appt to go to waste like the last one. Does anyone have any words of wisdom?

Thanks, April

HI April. Congrats on making it thru the first 3 months. Tough, huh? I can remember. Usually, they dont repeat MRIs at 3 months, unless you are having problems which are extensive. Because it takes about 6 months for any of the MS drugs to really kick in, its more likely they will wait until you have been on Avonex for 6 full months before repeating; but it could be sooner, especially if you have any complaints about your symptoms which are beyond the usual...

As far as not having had the LP, its probably not going to need to happen now. If your MRIs were significant enough to give you a dx, its really not necessary to do anymore testing. I have over 50 lesions on my brain MRIs and nothing on my spine; however my doctor DID do the LP, more to rule out infections then anything else. My LP came back perfectly clear with no abnomalities...

Sounds like you are in pretty good shape for this appointment. Its tough the first few months, but honestly, about 6 months into my starting my drug (rebif, which is the exact same interferon, just administered differently) I started to feel better than I had in a few years! Now, after 18 months on it, Im feeling really good and holding steady! Go to the appointment with an open mind, its possible they will order another MRI, but not highly likely.....most likely they are doing more of a med check, to see how you are adapting to the Avonex....
Good luck and keep us posted.
Nikki

H April. I feel for you, but I also think you have an excellent attitude and positive resolutions! I wanted to ask you, have you tried Aleve, for pre-injection drugs, instead of taking Tylenol or Motrin? You didnt actually say what you were trying.
One Aleve lasts 12 hours, and if after 3 or 4 hours you still feel lousy, you can take a second one. I have found thru trial and error that Aleve works best on Interferon aches and flu like symptoms better than anything else. Because it lasts so much longer, you can basically sleep thru the worst of it. If you havent given it a try, think about it....
When I started this mess I had horrible flu like symptoms for the first 3-4 months, then one day BOOM. They were over. I can now do my shot without taking anything at all and get right up afterwards and run out the door to carry on with my life. Never thought it would happen, but it did. Youll get there, too. It wont take much longer.
As for the LP, I can understand why you would want to avoid it if possible. I woke up with a numb tingley hand about 18 months ago. After being told it was carpal tunnel (it wasnt) and then being told it was a pinched nerve (nope!), my GP sent me for a CT scan, which led to a neuro consult. I had a dx in less than a week myself....the neuro sent me for the MRI, which was definitive; however, there had been an outbreak of Meningitis where I worked 3 months previous, and they did the LP more or less to "just be sure" that I hadnt contracted that (nope!) with that, I had a dx of MS very quickly as well.
Theres probably no reason at all to need an LP at this point, Id be really surprised if you did need one, but definately consider the MRIs to be important. The only way to tell if Avonex is right for you is to get checked at least every year, 6 months would be even better if your insurance will allow it and make sure nothing new is developing.
Keep me posted! And, remember you can always request going to Rebif. Its the exact same drug, given 3 times a week, sub cutaneously- the idea is that the drug doesnt "wear off" by the end of the week and its slightly stronger, however there are no side effects beyond what you have already experienced, the injection site reactions are LESS because its in the skin, not muscle, and it does last longer in the blood stream, thus never giving you that "I think Im ready for a shot feeling" which some people get with Avonex...its something to consider if they talk about "upping" your dosage or "changing' your meds...
Let me know how your appt goes..
Nikki