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Yours in Health,
The WebMD StaffView Thread
I was diagnosed in Febuary 2002 and started Avonex that March so nine years on I consider it the single most important thing I do every week in order to treat my MS.
Like you I have had years of stable MRI's which I put down to Avonex and maybe some good luck.
I have to say it is years ago since I had any side effects but I remember well enough to feel your pain.Have you had liver function and Avonex anti-bodies done lately as it is possible that if the are off, your body is not tolerating it well. I have had nights when I wake up at three o'clock and couldn't get back to sleep but I put up with that.
As for MS plateauing I have heard it said but for me I am staying with Avonex until I have to change.
As always to change or give up a therapy is your decision and yours alone do not let anyone force you to do something you are not happy with
Hope this helps
RoryView Thread
Sorry you are feeling so bad lately, and I sure hope you get good treatment soon.View Thread
That condition in my eye is a separate disease, Optic Neuritis, which is an inflammation and subsequent damage to the Optic Nerve. It is very important to your sight as it sends the signals from your eye to the brain, allowing you to interpret and process what you are seeing.
Thirdly, what you are referring to is called the "MS Fog", which is a cognitive lapse, again resulting from your brain not processing properly or quickly enough.
God Speed!View Thread
LisaView Thread
But I might not jump on the bandwagon right off, I tend to be more cautious now, so I might keep track of the post-marketing data to see what happens in the patient population during the first six months or so after its release.
KimView Thread
I REPLIED TODAY TO YOUR RESPONSE TO A YOUNG LADY QUESTIONING WHETHER OR NOT SHE SHE CONTINUE COPAXONE.
IN LIKE KIND MY RESPONSE/POST IS, AND PARDON ME, SHAKESPEARE, "To Avonex or not to Avonex, that is the question."
I KINDLY REQUEST THE HONOR OF YOUR CONSIDERATION TO MY POST. THANK YOU.View Thread
I was officially diagnosed in May 2000 and started Avonex. I used it religiously for 10 years. Then I got married and started to resent the day out my life every week that I missed. I have had no new symptoms and in 2011 had a stable MRI.
I took a shot a month ago and lost sleep, feeling as though I was going to die and subsequent after effects the following day. I have not used it since. I have an appointment with my neurologist in a couple of weeks but don't yet know what I'll decide. My main symptoms are fatigue, depression and cognitive fog. I can attest, however, that these have not been worse when on the Avonex as is sometimes described.
My gut intuition tells me that my MS has plateaued and that it probably won't worsen, other than due to age, just as it hasn't appreciably changed since my early 20's, which is when my neurologist and I think it first presented. I am now 46 and "look so good"- too good to be sick.
My neurologist has mentioned Glineya (sp?) as an alternative, but I don't like anything that might affect my eyes- don't want to touch it.
What do you think?View Thread
I like her approach, she is really looking into the gray matter lesions (something the other neuro never even mentioned to me), she said most of my symptoms are indicating gray matter activity rather than white matter. We'll see..
Thanks again,
JudyView Thread
Two drugs are approved to treat SPMS: Betaseron and Novantrone. Novantrone is a cancer chemo drug and is the only MS drug specifically for SPMS. Betaseron is an interferon that was originally created to treat RRMS.
More recently, Tysabri has been used in trials (but not yet approved) for SPMS.
Betaseron and Tysabri can be useful only if the patient is straddling the inflammatory phase of the disease.
Copaxone has been used on a limited basis in some PPMS and SPMS patients. This is off-label use, but could be an alternative for SPMS patients whose disease still has an inflammatory component and who cannot tolerate Betaseron.
Talk to your neuro if you have concerns about the efficacy of Copaxone and wish to discuss the alternatives.
Hope this helps.
KimView Thread
If you'd like to address a question to Dr. Lava, make a new post with his name in the heading. He usually answers questions on Fridays.
KimView Thread
Sorry to meet you here but welcome.
What follows is a general post I have saved to help newcomers understand the diagnostic process. It is not complete and I am sure others will join in.
If you suspect MS as the cause of your symptoms you need to try the following.
1 Find a neuro who specializes in MS or an MS care center, try www.msneuroratings.com for patient reviews on a state by state basis.
2 Be prepared to undergo all testing the require which may include,
A MRI's of the brain and cervical spine with and without contrast to look for active and inactive liaisons.
B Possibly a lumber puncture/ spinal tap to look for proteins and O-bands in the fluid around your brain and spine.
C Evoked potential testing to check the speed of your nerve responses, any delay can indicate inflammation.
D A complete neuro workup and a review of your medical history, try to keep a journal of your symptoms and how long the last and any triggers you can think have.
After all this which can take some time, you can hope that a specialist has enough info to make a diagnosis or at least rule out MS altogether, all though there are no guarantees as we often see false negatives or inconclusive results
For now find a specialist and follow his/her advice , let us know how you are doing and know that most of us have been where you are and indeed some on here still are there.
Rory
P.S. one other thing I would recommend is an opthamoligist to check your optic nerves and see if your vision loss os due inflamation in the optic nervesView Thread
My question to you is have you seen positive results from this therapy and if so how long did it take to see the results? How long in hours did this treatment take and is it the same amount every treatment?
thanks again Rob
PamView Thread
I am not on any other meds at the moment in hopes of going into remission after being weaned off the pred. I am down to 30mg now and today noticed a little shakiness in the am. No anxiety though.
I mentioned the possibility of a physiological cause for the anxiety to my husband, who decided that was hogwash and that I was just anxious over all that was going on. But then he is not a practitioner...I am. It makes perfect sense to me that if a lesion occurs in the area of the brain responsible for mood there could be an increase in anxiety (or depression, or anger or what have you). So temporal lobes maybe?
I found a vague reference to it elsewhere on anther site.
My own little clinical trial...In the process of dechallenging! We will see how I am post pred.View Thread
I have been experiencing some pretty bad neurological symptoms which have put me off work for 6 months. My HIV specialist had ordered an MRI which came back with significant lesions. A second MRI confirmed that a few weeks ago. So I was scheduled to see a neurologist in a few months but my case was reviewed again and I got fast-tracked straight into the MS clinic of the Neuro Institute.
So now I am almost certain that I have MS, I am just hoping now that its not a malignant type.
Although I can still walk, my feet numbess which started about 2-3 years ago is gradually increasing and a faster rate now. Sometimes, it will go above my ankle which makes walking akward and painful. The tingling which had started a year ago is now somewhat under control with meds but got so intense it was like I was continously electrified. This was the main thing that broke down my body which led me to stop working. I have returned to work now but other symptoms are starting to show up like dizziness and loss of balance and coordination, slurred speach, confusion, amnesia and blurred vision.
So I can say that I dont have the relapsing-remitting type but is more of the progressive type. And the speed of the progressivess is what is worrying me. ( and the fact that the malignant type is usually diagnosed in the early 40s vs 30s and is asscoiated more with men).
I know my current situation can be very anxious and that in itself will exacerbate my symptoms and I keep on reminding me that.
All this being said Eddie, I would be glad to share the information I will get from my MS specialist considering we share both the same conditions. I hope also he will have more information on treating both conditions.
VinceView Thread
You must contact your neurologist and describe all of your symptoms. If your symptoms persist for more than two or three days then you might be having a flare. If your doc determines that you are in flare, steroid therapy can help.
However, blurred vision can be a sign of optic neuritis. If your doctor determines that you have optic neuritis, steroid treatment might not be appropriate. Your doctor will recommend treatment options.
If injectable disease-modifying therapies such as Copaxone don't work for you, there are other delivery systems to consider. Tysabri is a once-monthly infusion and Gilenya is an oral drug. Another oral therapy to consider is BG-12, which should be FDA-approved by January, 2013. You can read about these alternatives on WebMD, the National Multiple Sclerosis Society, and by typing the drug names into your search box to do further research. Side effects and risks should be carefully considered before starting any therapy. Your doctor should also provide info and a recommendation based on your needs.
KimView Thread
She also told me that may be why I have short-term memory issues and also experiencing problems with the ability to do the things that used to come natural to me and now I have to think abut what I am doing. She says this is significant to GM lesions.
we will see. Anyway, thanks for your help as always.
JudyView Thread
I will be seeing a new neurologist for an MS workup in two weeks. Your information was helpful to me.DebbieView Thread
DebbieView Thread
DebbieView Thread
DebbieView Thread
I appreciate all the feedback.
tamView Thread
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