Hello Fellow MSers! I've been on Avonex since 1996 and STILL have side effects that can be miserable at times. I'm thinking about switching to Gilenya (fingolimod) in the future (no injections!!!) and would like to hear of anyone's feedback on the subject.
I haven't discussed anything with my neuro yet but I'm trying to understand the pros and cons of the possible switch in therapy. Most likely, my neuro will tell me...."don't fix it if it ain't broke" so any feedback appreciated.
A year ago, my neuro decided I might have CIS - Clinical Isolated Syndrome when I was DXed in 1996 with relapsing remitting MS......but also said I most definitely have MS, even though I've never had a problem since day of DX and have stayed on Avonex every week....except for the past 6 months.
Any feedback available? I'm so sick of the weekly injections and pills sound so much better! Am I stepping from the pan into the fire?
Hey Kim - Just picked up the faxed report from my neuro and his diagnosis "assessment" is as follows:
"Multiple Sclerosis relapsing/remitting stable on long-term Avonex therapy; she may be considered to be an individual who had a clinically isolated syndrome that was treated early with disease modifying therapy and she has never developed clinically definite multiple sclerosis. I think she is one of the really lucky few who has had this happen."
NOTHING was even mentioned about ADEM in his report, even though we sat there and talked about it! Go figure! Maybe ADEM was "considered" in the beginning 16 years ago in the MS diagnosis but he's settled on CIS instead.
I guess this is good news....regardless and MS symptoms are held at bay at this point! Thanks for your info supplied.View Thread
Until I read the neuro's 3-page report, I'm as confused as you are right now. At one point, he wrote down "ADEM" and explained it then he talked about CIS - Clinical Isolated Syndrome.....which is the area that a lot of research has been done over the years.
From what I understand, my MS diagnosis has not followed the "normal" pattern of relapsing/remitting MS over the past 17 years. That's WHY I questioned him about it many times each time I met with him for a check-up!!!
CIS is basically an MS diagnosis but it only appears ONCE, becomes "isolated" and never shows up again. That's why I thought it was "safe" to get OFF Avonex entirely but he wants me to stay on it. Don't fix it....if it ain't broke!
Maybe I can explain it better, once I pick up the report tomorrow. The more I read online about ADEM, the more confused I became. One more reason to quit reading and believing everything on the internet!!! Millions of options and millions more of false information to be found!!!
Thanks for your reply. I always enjoy reading your feedback about different subjects on this site! Thanks again!
Just had my yearly visit with my neurologist and my MS diagnosis (from 17 years ago) has changed somewhat. I had one exacerbation that lasted several months. Neuro immediately put me on Avonex and life went on as normal.
Several years later, I starting "questioning" by neuro about a conclusive DX and he assured me I have MS. I kept waiting for the ax to fall and it never has.
Now 17 years later and a lot of MS research being done, I understand (I think!) that I may have Acute Disseminated Encephalomyelitis. "ADEM" is caused by (?) a viral or bacterial infection and has a lot of MS markers, but it's still inside the MS "spectrum" - whatever that means! It is an inflammation of the brain and spinal cord.
I guess I was "happy" with the news but the downside of it.....I still have to continue the Avonex weekly therapy! Bummer!
Anyone ever hear of this because I still have questions. Hackwriter/Kim? I'd like your take on this if you have the time. I'm awaiting the neuro's report to see if he wrote something I can truly understand as to what's going on.
Incidentally, I was one of my neuro's FIRST patients to begin an Avonex regimen after my first (and only!) exacerbation.....which was unheard of 17 years ago! He refused to wait until another "attack" occurred and I trust his judgment.....even though I questioned his DX!
Any info appreciated. Have research ADEM online and it's quite confusing. I want things in "layman's" language!!! Thanks!View Thread
Thanks to those who responded to my questions about losing my job and dealing with the Director from Hell. I'm biding my time right now and not doing anything hasty or making the wrong move about anything. I've just been watching and waiting and something GREAT may have happened in the last two weeks or so, or so I was told.
A woman I used to work with years ago called me last night and informed me that the so-called director we both know and abhor has just gotten into some serious trouble of some kind. That's all I know right now and it will be most interesting to see what develops in the coming days.
What goes around eventually comes around, right? Too bad, so sad.....NOT!!! This is some GOOD KARMA for a change!!!View Thread
No, no union whatsoever. I'm gonna have to fight this battle on my own after I make some more phone calls to get some answers and see if I have a fighting chance. If I choose NOT to question everything that happened, then I don't have the right to complain and gripe about nothing being attempted or accomplished. I'm just biding my time right now and watching and waiting.......View Thread
Hi Kim and thanks for your input, because you're probably right. Problem is........I'm the THIRD person in my office the director has gotten rid of in the last few years......all for health reasons.
One staff member also had MS and had asked for accommodations and didn't get them. She filed a grievance against the director and her case was going to court until the school district "settled" with her for an undisclosed amount of money.
The other staff member's husband was dying of cancer and was in the hospital. That staff member was written up for her absences (to be with her husband in his final days) and then was informed that her contract was NOT going to be renewed the following school year. She ended up losing her husband AND her job within a month or so!
Suffice it to say that the director has NO EMPATHY for anyone, for ANY reason! Hostile environment is an understatement!!! She's cold-blooded and it needs to STOP!!!
After my demise from the office, I scheduled a meeting with the Superintendent.......not to "fight" for my job back, but to discuss what had just happened and possibly prove that the director needed to be let go, demoted, whatever. FIRING HER would be the best move the school could make! Everyone in the office always wondered if THEY would be her next "target"......as she always had one.......and has always gotten away with it.
My meeting was "productive" with the Superintendent as he took notes, asked me questions, and seemed genuinely concerned about the director and her tactics. And yes, I handed him DOCUMENTATION to prove my points I was trying to make. Isn't that the name of the game?
Yes, I "believe" I was discriminated against (words from EEOC) and I still want some answers from them. I was just wondering if other people had ever fought the same battle and how it all ended. Very hard to prove discrimination? I'm gonna give it my best shot because I have nothing to lose at this point. If nothing else, the EEOC needs to re-word or explain what they mean by discrimination. If nothing will be accomplished or settled, it's kind of a moot point to fight for something that won't happen. "BELIEVE" is the key word!!!
Thanks again for your explanations and slant on the subject.View Thread
Has anyone ever dealt with ADA (Americans with Disabilities Act) since you've been working and trying to manage the weird symptoms of MS?
I've been working in the same office (for school district) for 24 years. I was dx'ed with relapsing/remitting 17 years ago and have exceptionally well until the last year or so. I began to notice I was starting to have "cognitive" problems.
Back in April, I was called into my director's office and written up for some issues that were pure BS but it was at that time that I was asked WHY I was having problems with things that had never been a problem before. I calmly explained the MS sometimes produces cognitive problems.......among other things.
Everyone in my office knows I've had MS a long time, but it's NOT something I've ever used as an "excuse" or talk about. I explained to my director that MS is a neurological disease and I have no control over the problems and don't even KNOW when the cognitive problems are kicking in. I also told her I'd give her some information about so she could read it and understand it. I further told her I'd appreciate her telling me if she noticed it becoming worse on some days so we could discuss the issue. Instead, she WROTE ME UP!
Three weeks ago, I was called into her office and was put on paid administrative leave until my contract ended recently. And since I was an "at will" employee, she didn't have to give me a "reason" for firing me. I was told to load up my stuff and leave......which I abruptly did.
Is it time for me to contact and meet with someone from ADA or the EEOC? In my latest copy of Neurology Now, there was an article on "Workplace Rights" and it literally jumped off the page as I was reading it!!! One sentence in particular said, "If you BELIEVE your rights in the workplace have been violated because of having MS, you can file charges with the Equal Employment Opportunity Commision."
Any suggestions or ideas from anyone? Since I didn't get a CONCRETE answer for being fired, I can only assume my director thought my symptoms would get worse and she fired me. Who knows? Twenty-four years down the drain!!!!!!!!!! I'm NOT going down without a fight but also have NO desire to get my job back.......unless my director leaves!!!!!
Thanks for any help, suggestions, or discussion on this subject.
I was diagnosed 16 years ago and was my neurologist's first patient to inject with Avonex. The side effects were bad (massive chills, tight muscles) but over time, most of the effects have gone away. The new injector pen is a life saver as I no longer have to depend on someone else once a week to help me. I take two Advils before injecting now and two more Advil tabs several hours later and have no problems. The injector pen is the greatest and NOT the least bit painful!!!View Thread