I am wondering about Tecfidera. I have been feeling like I am dying so I am wondering if I should try something. I lost my spleen when I was 18 and I have had some trouble with Injectibles. I have not been treated in several years. I wonder if Tecfidera can help me because I feel really bad and hurt awful. I guess I would have to see the doctor who tried to force me to go on Tysabri, since he did try and help me when many others did not want to clean up other doctors mess. I don't know where else to turn. I am frightened because of PML due to not having a spleen. I don't want to survive that brain damaging illness.
Stargazer
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Are you being seen at an MS center? I wonder if that may be the best place to get the answers you are looking for. Is there one a reasonable distance from you where you could be seen? I'm sure you're already researching all DMTs to see what might be a good choice for you, and though that may narrow the field a bit, I think that if it were me, I would want to try to get to an MS center where the focus is totally MS and where they would have more experience in dealing with your particular situation.
The state I am in is lovely. Well the roads are terrible. Good doctors generally leave. We are a poor state and many people are addicted to opioids from chronic pain which seldom is addressed. They even convinced my SO that I should be immediately ripped off my Xanax and put in the hospital and I thought I would die from my migraine that night. They said the next days after I vomited for hours, no xanax but here is Trazodone, take it or suffer. I only took it a day or two. They convinced my SO that I should not have sleep meds so I get very little sleep. They tried to take me off my migraine meds totally but I screamed foul. They aren't strong enough to feel but I have chronic migraines so they I get 20 at a time about twice a month. I don't take them unless I have to. I never ever tried Marijuana, but at this point, I would. CBD oil in it's state legal form is not enough for central nervous stystem. They got a Medical MJ law passed in 17 but things move so slow. Illegal moves fast but legal is slow. A doctor has to be assigned to prescribe it and none are avail. And no doctor wants to clean up another doctors mess at no timely diagnosis. Many people went to their graves with it I would swear to. My father probably was one. Still thank God for all the herbs that have helped me in the past but as you know, no cure. So many say MJ has helped them in their pain and spasticity struggles. Tired of the awful painful muscle spasms in the day and night but still I try to keep moving even stiffly. Never wanted to break the law, never wanted to do wrong but this pain tears at my soul. Thinking of writing Willie and asking for seeds just kidding.
Thank you. The only MS center is hours away. I went there after getting my diagnosis. They are the ones who told me yes, they were positive I had it, but then the diagnosing doctor left. She referred me to the CC. I am going to keep praying about it.
I had been on Tecfidera for 4 years. I have progressive MS, which was mistakenly diagnosed as RRMS. Tecfidera doesn't do anything for it. In fact, I feel like my MS progressed on it. Now I am on Ocrevus and only wish I had found out about it sooner. According to my neuro, this is the only MS DMT that slows down disability progression. People here have reported miraculous results. I know it's an infusion, but Tecfidera will do nothing for your pain for sure.
I am so sorry. I hope for you. At SPMS it is progressive too. I have read tons of research and viewed tons of mri's before getting diagnosed. Now I just try to survive. The stress of the pain and nerve damage makes me talk too much. I thought I was God's worst problem child, until I found someone even younger than me who said they could not stop talking about it. Now I don't feel so odd, or dysfunctional because I guess it is the damage that also hinders sleep, and so many other things. I feel so weak that it is difficult to move, but there is nobody to do so I do what I can. Today, I am too tired to do anything. God bless you all even if you don't believe in God. I have literally seen his hand in my life so I believe. Also I know the tricks of Satan so I believe in God. I am not trying to tell others what to do. God loves everyone.
I am certainly not trying to tell you what to do. I apologise if I ever came across like I was. But what is your plan? When were you diagnosed? What are doing to fight MS?
Hey stargazer have an aunt with that rag, Tysabri has nothing at all to do with PML. The PML drug is I believe Gilenya, somebody correct me if I am wrong. Antway Rec is about 30ish percent reduction, try something stronger. Ocrevus is the strongest these days to my knowledge. Always go for the strongest and remember everything has a side effect. Good luck on your decision.
Hi I'm about all your struggles. I TOO talked be it messed up about my MS pain symptoms galore and then cancer for years! EVERYONE got tired of hearing about it! When you live with terrible pain symptoms how can you not talk about it. Plus you are scared out of your wits!
My MS group I found and joined 10 years ago saved ME. They are my MS FAMILY. They understood and accepted me as I Am. That is the best feeling to be accepted without judgement or you don't have to prove yourself to others. I have been pushed away no one wanted to be around me because of how bad I was. It has taken me years to walk talk better lots of PT different medications and therapists to get on my OWN. Who would have thought I would be left by others except for my Lord. He has ALWAYS been there with ME. Amen
Tecfidera has tolerability problems for some people. Look at this new one - I started it 3 years ago and really like it: multiplesclerosisnewstoday.... It's easy to tolerate and convenient, no PML risk.
I refused Tysabri after I read it got to over 100 people got PML. And that was a long time ago. I am not sure my insurance will cover much. I must find a good doctor. I don't have a spleen so that immune compromises me. I applied for a Medical Marijuana permit but things go very slow in my state. They passed an approval two years ago for it, but so far there is no program. CBD oil will not help my pain. I can barely stand to use my left hand, and both hands are sensory damaged and losing their strength. Now my left ankle and knee are hurting badly. Everything on the left is much worse. I keep saying it is ok. And God knows about it. But it is really hard feeling ok now. I find it hard to even do much at all. Now I know what I didn't know and feel it headon rather than before when a doctor told me there was something wrong with me when I was young, and that I would be in a lot of pain, and probably not live to a ripe old age and may be in a wheel chair. He would not tell me then what name to put on it. Send me some seeds Willy. What I wouldn't do if I had a way to stop this awful pain. I had pain in the worst womanly area last night. Shocking!
Thank you. I am realizing I am in a relapse, because after two months, of pain and weakness and numbness, I am starting to be able to use my left hand a little more so cross yur fingers for me. The CBD oil, Frankincense, and other annoying things like wearing a long wrist brace for the popping (tendons?), and finally, it is a little better. I was afraid it was passing to my right wrist but I believe, I am still having relapses. I looked at MavenClad but I think that it raises your risk for cancer and there is a lot of that in our family. I am considering trying Mayzent. It is helping some with active SPMS. It is for people with a lot of inflammation and that is sure me because I hurt bad! 68 and feeling like 90, I would try it if a lot of people don't start getting PML. They say their is a risk, but there is a risk with anyone with immune function disorders whether you are on something or not. I know it is expensive, but if you make below a certain amount you can apply for assistance for it. We make below that amount and I am looking at a doctor about a half hour away. Well if anyone wants to add to this, post concerns or if you are trying this, please post. God Bless You all.
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just kidding. 
Well I saw the new neuro yesterday
Introducing myself
My story
Needing to decide between copaxone and tecfidera
