Just saying "Hi"/Update

[Ojibajo]

Well I had my semi annual neuro check-up on Tuesday. She apparently didn't realize that I was was NOT takeing a DMD, and thought that I had resumed Avonex.

I told her that I probably wasn't going to be compliant on it because I was sick of injecting myself. I still have 4 full doses in the refrigerator which I feel kind of bad about since that's about $3000 worth of medication. However I didn't realize they were going to send it since I said that I was all set on refills.

I mentioned Tecfidera since I said I wasn't really interested in another injectable, but honestly I have been doing really well in the past year that I haven't been on anything. We'll see what my next MRI says.

I am not symptom free but I don't have any new ones either. I am really scared about starting the Tecfidera. I have heard a lot of horror stories about it. I have heard everything form it is a fire retardant, to it increases your risk of cancer, to it causes your face to flush and makes you poop your pants..  I don't really want to take a DMD because I feel fine and I don't think that I need one, but I feel really, really pressured into taking it. My neuro is making it sound like if I do take it then I will be just fine, and if I don't, I'll be a guaranteed cripple in no time flat. I don't know what to do. I sort of feel like I HAVE to take it, at the same time, I that it's my boy and I don't have to if I don't want to. Then again I don't want to look back one day and think, "if only". I don't know. Anyway...moving on. New topic.

I had my first appointment with my new physical therapist. I'm kind of a hot mess I guess from the sounds of her eval. LOL! I kind of knew that. I got hooked up with a TENS unit! That thing is awesome! It has made a huge difference in my nerve pain and some of the pain from my spasticity. So I will be getting some PT to address the issues with my left foot and leg, hips and lower back and OT for my hand weakness.  We'll see how it goes.

Well tomorrow is Friday so have a good weekend everyone!

I've been trying to work out 5-6 days a week, although I didn't exactly make that goal this week due to all of my doctors appts this week. That darn fatigue kicked in pretty hard core this week. I bought a used treadmill last weekend to use home so that even on the days that I don't make it to the gym I can still at least get in a short walk.

[Lulu54]

Hey, OJ.  It sounds like you are going in circle with this with yourself.  You have a lot of pros/cons, yes/no, black/white/grey debates going on with yourself.  

I'm glad you are comfortable talking this out and getting the feedback.

Those new symptoms that you are dealing with may be coming from disease activity, so I don't necessarily agree that you are still the same.  

Ultimately, you know you alone decide what kind of gambler you want to be.  If you guess right and stay off the meds you will be so happy.  If you are wrong, as you point out, you only have to live with your own thoughts of wondering how it would have been if you had just taken that DMD in 2013.

The side effects of tecfidera you list are what I believe extreme - people always write to complain about a drug but you rarely see positive comments.

good luck with this next step - it's                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                     up to you.

[Ojibajo]

Supermom -- I haven't made a decision yet, so yes, I am still thinking about it.

kwarendorft - I'm almost too scared to switch from my insurance to what I can get through the ACA. What if the plan I get doesn't cover my meds, or participate with my doctors. Sometimes I wish I have never gone to the doctor about my migraines. That is what lead to my diagnosis. This disease really screws people every which way and that, doesn't it.

[kwarendorf]

Hi O-

One of the biggest draw backs to DMDs is the cost. When I was in Tysabri the billed cost was over $60,000 a year! Now, on Rituxan, it's down to a much more manageable $20,000-$40,000 :-)

I understand that these DMDs come with some potentially scary side effects. I think you are wise to try Tecfidera and see how you do. Maybe now, with the ACA you will be able to get your own insurance.

Kyle

[supermum_ms]

I have to admit to totally understanding your perspective, and considering my entire family experience with common and rare reactions to medications, i just get where your coming from. But it's hard for me to not recommend DMD's, because i really and truly have more trust in slowing down MS with a DMD, than i do just leaving it to chance and doing nothing.

It's so true that DMD's don't take back the damage that's already happened, and unfortunately they don't work for everyone, so many do have to try a few DMD's before finding the one that works for them but the alternative of doing nothing from my perspective, just can't be the better option in the long term.  

I would love to tell you i look fine and no one would even guess there was anything wrong with me...........but I would definitely be lying to you because it's just so obvious these days. I am nothing like I use to be, i'm still laughing and still trying but every year i'm loosing more and more ground. If i could go back to a time before my mobility and communication was fried............I have to believe, i would not of given up on the hope, no matter what, I still think i'd of tried everything I could, if there was even a remote chance of altering my today.

I really do understand your point of view but i still believe it's worth giving DMD's another try if you have that option available to you, so please think about it!

Hugs............JJ  

  

[Ojibajo]

I guess it just makes me a little nervous that Dimethyl fumarate (DMF) was  applied as a biocide in furniture or shoes to prevent growths of mold during storage or transport in a humid climate,  but was banned due to incidences of severe allergic reactions after skin contact. So it sort of makes me nervous that it is to toxic for the OUTSIDE of my body, but okay for the INSIDE of my body. The risk of GI side effects is also troubling to me because I already have GI issues.

One of my friends is on her third med and her MS is now so bad that she can no longer work, she can barely walk, she can't drive anymore. She had a flare that came on so suddenly the other day and was so severe that they thought that perhaps she had a stroke. So maybe that's why I sort of feel like the DMD think is almost like Russian roulette or a false sense of security. I have had symptoms for my years of my life than not, but other than the fatigue most of my symptoms haven't been too hair-raising. I didn't even start a DMD until Spring of 2011. I probably only took it for a year at the most and stopped. All of my MRIs since have still been stable.

I guess I can do what the nurse said and try it and if the side effects are to much I can stop it. As of right now, I don't even know if my insurance is going to approve it. I'm on a Cobra Plan and I can only stay on it for 18 months after my termination date, so that might be a factor as well.

[cubbiesfan918]

Hi Ojibajo -

The side things you have stated about Tecfidera sound grossly over exaggerated but maybe I've just had a good experience. Yes, some people have those side effects. They are not nearly as dramatic as you have detailed, in my humble opinion.

I started 2 months ago and began taking acidophilis a couple weeks prior to ease GI side affects. I had none. The flushing is very minor, I can only tell its happening when I feel a little "tingle" on the top of my earlobes. It does not hurt, sting or seem to make anything red. I compare to a less severe niacin flush.

I have other friends from the forum that are on Tecfidera and are experiencing similar and positive results as mine. I love the fact that it was utilized for psoriasis for many years and feel that the side effects are out there. I respect that everyone is different. I tried Copaxone first and did not have a good experience. I am grateful every time I take my little green pill :)

Best Wishes to you and forgive me if I've overstepped.
Lizzie

[kwarendorf]

I'm in a similar state. Walking, talking, chewing gum etc... If you saw me you'd never know. I have everyday stuff but it's largely invisible.

I guess the difference between us is that in my head DMD's are a way for me to try and keep things the way they are :-)

Kyle

[Ojibajo]

I guess I should say that I feel fine but the PT made it sound like I was a hot mess. She just looked at her notes and said "Wow"

I don't have any major new symptoms. The ones that I have I have had for years, eve prior to being diagnosed. I was just diagnosed with a variety of different things (carpal tunnel, etc). I also don't know that everything is MS related. I also have arthritis in my spine. It runs in my family. My dad has it. So does his brother. I have tight hip sockets. Stuff like that. I don't think any of that has anything to do with MS.

Also DMDs don't control symptoms.

I am still walking, working out, working, etc. Life as usual. I guess in perspective, I think that I am doing pretty well. Especially when I have friends who can no longer work or drive or walk across the room unassisted or hold a pencil, I'm in pretty decent shape.

[kwarendorf]

Hi'

I'm glad to hear things are going reasonably well. I am a bit confused though. In the first part of your post your saying that you're doing just fine and that you don't think you need a DMD.

In the second part you mention that you saw a PT and were a "hot mess"' needing work on "pain from my spasticity. So I will be getting some PT to address the issues with my left foot and leg, hips and lower back and OT for my hand weakness. "

If it were me, I'm not sure I would describe myself as doing really well :-) there is no rule that says you have to take a DMD. But as long as they're available...

Just one man's opinion. Have a great weekend!

Kyle