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Multiple Sclerosis
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Posted 5/6/2014 7:38 PM (GMT 0)
I am going to be starting Tecfidera tomorrow and was wondering if anyone has tired it and how long before your symptoms start to clear? Thanks
Posted 5/6/2014 11:52 PM (GMT 0)
I take copaxone but I considered tecfidera when it was released. I decided against changing meds in the long run. Tecfidera is a disease modifying med. It is meant to slow the development of lesions and possibly the progression of MS. It isn't design and most likely won't clear symptoms. Your symptoms may resolve on their own over time.

Most people with MS have residual symptoms they have to manage. Those symptoms can sometimes be managed through other prescriptions.
Posted 5/7/2014 11:09 AM (GMT 0)
Not what I wanted to hear, currently I can nearly move.I'm new to this so I don't know what to expect. I just had IV steroids and I am worse. Is this a normal reaction? The pain in my body is aweful. Dizziness is the worse. I guess I was hoping for a miracle drug. The medication that you are on does it help with your symptoms?

Post Edited (Once bitten, twice shy) : 5/7/2014 5:50:18 AM (GMT-6)

Posted 5/7/2014 12:47 PM (GMT 0)
I always responded to the solumedrol however, I hated the side effects. My presenting symptom was vertigo. Over the course of 3 weeks it progressed to where I was wall walking. I was diagnosed quickly over a matter of 5 weeks. Over several weeks, my vertigo got better. This was without treatment. Over the next year it continued to improve.

I still have constant but mild vertigo. I have had it for almost 8 years now. Copaxone doesn't treat my symptoms. It has modified my immune system so that I have fewer acute flares. Each time I flare, I am left with symptoms. I'm numb from mid-shins to my toes, balance issues, vertigo, nystagmus and some bowel and bladder problems. I fully expect these to be permanent symptoms.

MS is considered incurable and progressive. Due to the fact that you responded very negatively to the steroids, you may want to revisit your diagnosis. Perhaps you still have a Lyme disease problem. Lyme typically responds poorly to steroids.

I'm sorry you are so very sick. I hope you find something soon that helps you. Keep us posted. Ask any questions you may have.
Posted 5/7/2014 6:54 PM (GMT 0)
I had a relapse in 2011 that kept me bedridden for three months (vertigo and muscle weakness). I lost about 40 lbs because I couldn't keep any food down. I was given three steroid treatments--they never helped. I still have many residual symptoms (including vertigo) but they are manageable. I am able to live on my own. I was on Copaxone when I had that relapse. Afterwards I switched to Tysabri.

Sometimes I am unsure if my symptoms got better--or if I finally just got used to them. I still have vertigo and vision problems that make walking challenging. I'm sure if I just woke up with those symptoms today, I probably wouldn't be able to get out of bed. But since I've had to live with those symptoms that last three years, my brain/body has learned to adapt. I'm not saying your symptoms won't go away--because they often do with many MS patients. But even if they don't go completely away, your body will learn to adapt.
Posted 5/7/2014 8:54 PM (GMT 0)
Bad Mojo,

I feel the same way. I work full time still. I know I look "normal" to most but if they only knew. I have to work hard at every step. It's like being a sailor on a ship. I have adjusted over time. I nearly always am touching something solid when standing .........a wall, a grocery cart, a counter.

A couple of years ago I lost most of the vision in one eye for 4 months. At first I was afraid to do anything. I was nauseous from the bizarre sensory input. It took a couple of weeks and I just learned to live with it. I was back at work and driving. I was glad when my vision slowly got better. It did take months though.
Posted 5/7/2014 10:20 PM (GMT 0)
I understand how your body adjust, I seem to be making it all the time. I call it "my new norm"
I have been ill now for 3 yrs. The problem is that the doctors can not get a firm diagnosis. I tested positive for Lyme 3 yrs ago and was treated but when I stop the abx I get spells again and each time they seem to get worse. I have been to 6 neurologist and only one says that it is Ms out of all six, but my LLMd says that it is no longer lyme. I have been ping pong ed for the last 3 yrs. My dr figured we would try the steroids and if I responded then my neurologist was going to start me on the tecfidera. I took a nose dive and was at the ER today. Now my neurologist is second guesssing himself and wants me to get another opinion on the MS this will be the 7th neurologist.
Posted 5/8/2014 12:58 AM (GMT 0)
Not responding to steroids is a strong indicator of a possible misdiagnosis. MS flares are caused by acute inflammation from an inappropriate immune response. It should respond to steroids.

While I detest the side effects of solumedrol, I have always experienced some benefit.

I'm sorry you have had to see so many doctors without answers! How awfully frustrating!!!!
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