It's been a LONG time since I've posted anything here (hello everyone!) Hopefully, some of you will remember me as I've been an MSer since 1996 and have "endured" Avonex for 17 long years.....with absolutely NO changes over the years since my one and only exacerbation.
A year ago, I decided to take myself off Avonex because I was so sick of the weekly problems I was having with the drug that lasted for hours. I saw my neurologist in October for a yearly checkup, told him I had QUIT taking Avonex, and he wanted me to get another brain MRI since he also added CSI (Clinically Isolated Syndrome) to my original dx of MS.
Had the MRI done & met with a NEW neuro, since my other neuro had retired due to his own health reasons. Then new neuro went over the newest MRI and didn't know WHAT was going on, so she asked me to get an x-ray of my SKULL. What??? She wouldn't reply exactly WHY she wanted it.
I had the skull x-ray done, the radiologist immediately called me into his office a few minutes later, had me sit down and told me he was "concerned" about what he saw on the x-ray. He "suggested" it could be MULTIPLE MYELOMA or METASTATIC CANCER. WHAT???
Within 2 days, I was meeting with an ONCOLOGIST.....who ran a lot of bloodwork and urine tests and asked me a million questions in the process. I also had 25 more x-rays done on every bone in my body after I met with him.
I had to wait all thru Christmas to meet with the oncologist 3 weeks later and he quickly told me that NO CANCER was detected anywhere. In short, he didn't KNOW what was going on in my skull.....and seemed to think it had to do with MS instead. Oh, really???
Our meeting ended & he said he would see me in a year & I'd have to have the same x-rays updated at that time. He basically concurred with my second neuro that "venous lakes or hemangiomas" from MS were present.
I called the new neuro about the hell I had just gone thru and wanted to discuss it with her but she wanted to meet with me IN PERSON and wouldn't discuss anything on the phone. Great!!! NOT!!!
Now.....do I go get complete second opinions, wait for another year, or what? Sorry so long but I don't know what to do. I'm NOT having problems of any kind.....MS or cancer-related!
Any suggestions from anyone? Any advice? I'm thankful for a GREAT report from the oncologist but I'm still confused as hell as to WHY I just went through a VERY traumatic experience that resulted in NO CONCRETE answers at this point.....other than I don't have cancer!!! Thank you, God!!!
Any input from others will be MUCH appreciated. Thanks so much! I promise I won't write as much the next time!!!
Hi Kim and thanks so much for your input and suggestions. Within a few weeks, I'll have everything squared away with all the hospital bills that are starting to come in and I'll definitely be scheduling another appointment with the new neuro and going forward.
My next move is to meet with an MS "specialist" to get a second opinion so I'll feel comfortable with the results.....one way or the other!
Over the years I questioned my original neurologist about the MS diagnosis and he ASSURED me he was correct in the dx and could back it up with the spinal tap that was done back in 1996. I guess my whole journey with MS has been different than most......but I'm NOT complaining!!!
My journey with MS literally began overnight with a MASSIVE headache and within hours, I had lost just about everything on my right side, and it stayed that way for a few weeks, and went away completely and has never been a problem.
The worst part of MS was dealing with the effects of Avonex once a week and the effects NEVER lessened over 17 years, so I just QUIT taking it a year ago and haven't looked back since. Again, everything about my health has always been strange and different and the doctors involved just kinda shake their heads and don't KNOW the answer to everything.....or anything!!! GRRR!!
It's been a hell of a ride in the last two months......to go from Multiple Sclerosis to possible Multiple Myeloma!!! Not fun at all with all the stress and wild thoughts I was having "if" it was cancer and "if" it was malignant! Yes, I still supposedly have MS but will NOT get back on meds unless the neuro can tell me more about everything.
Will keep you updated in a few weeks once I meet with the neurologist and go from there.........thanks again for your quick reply!!!View Thread
I just read your question about MS medicines. I was diagnosed back in 1996 and was my neurologist's first patient to get on Avonex. I've been on the drug for 18 years with a few problems (massive chills, muscle cramps) that lasted a few hours, but I never missed work because I always injected on Friday nights. I always take 2 Aleve before and after injecting and go to bed a few hours later.
The new injector pen is the BEST!!! For years, I had a nurse friend inject me (Nurse Ratchet!) and when the pen was finally introduced, it made my life a LOT easier by not having to depend on someone.The pen is virtually PAINLESS and easy!!!
Hope this little bit of information will help you in some way in the MS Journey! Good luck with whatever you choose!
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?
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
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!
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