Its been awhile since I've been here. Just stopped in to say Im doing really well. I have been using the avonex pen and I absolutely love it. 100% improvement from having to use the syringes and my husband doing the injections. I now do it myself with the pen. I have not had another attack since diagnosis. Does anyone find that odd? It's so hard to believe that I MS. I read posts here from time to time and it seems everyone experiences issues on a pretty daily basis. Not me....so many doubts I have about my diagnosis!!
Hi. It is ok that u have MS. I got diagnosed in 2006 and it bothered me more than then it does now. I think time and, for me, being compliant with taking my Copaxone helped me realize I am doing all I can do so I will try my hardest to not let it get the best of me most of the time. My left leg gets tired faster than my right leg and it stands out mostly when I exercise or am tired but it isn't debilitating so I deal with it. My husband often says save your depression and woe for when/if something bad actually happens instead of anticipating it. Easier said than done but the shot hurts for a few minutes and then u have done your body good so feel accomplished, good luck
I can understand how you feel. It's hard to believe in a diagnosis, when at present you don't even feel sick. The thing is: everybody's MS is different. For me, it was mostly symptoms I could blame on scoliosis and pinched nerves for a very long time- many years in fact.
Darn twitchy fingers!!! I wasn't going to post just yet. And I'm not happy ygat you have this disease!! I was going to add that it's normal to feel doubt or disbelief- especially since you aren't feeling bad. Enjoy feeling good for as long as you can.
Tammy, I still doubt my diagnosis and ask my neuro that question often - he says he loves it when his patients ask that because it means our therapy is working and we are doing well. I am so glad the copaxone is working for you - don't be lulled into thinking you sare over MS when it is just lurking waiting to hit at the most inopportune time. Remember this is Relapsing and Remitting and you can be in a remitting period for years and even decades if your therapy is working.
Decades?? Really?! I'm wondering on the average how much time between relapses for MS patients. I spoke with a woman I met at a euchre tournament and she said it was really good that I have gone a year and a half with no relapse. She said it could mean I have a mild case. Does anyone know if this is true?
I still question my diagnosis... I have PPMS so I don't have relaspes, just a slow steady decline. Occasinally I get reminded when I sit trying to make the right word either come out of my mouth or written down on paper. I am very happy that you are remitting and your therapy is working, I hope you never have another relasp :)
~Live as if all your dreams came true~
yes, you could have a mild case of MS, but that is impossible to tell until you get to the end of your life, if you know what I mean. The other thing we tend to overlook is relapses are not always these dramatic events - it can simply be a negative change in our physical condition that lasts more than 24 hours. Walking differently is always my relapse clue - at least according to my neuro. Differences in balance can also be a sign of a relapse.
I've been sort of "trolling" the forum here because I have a lot on my mind and can't sleep. I am also on Avonex, well at least I am supposed to be. I started having trouble injecting last year lots of pain and bruising when initially I was fine with injecting. I stopped because I was "late" and wanted to make sure that I wasn't pregnant and then I discontinued my injections because my deductible wasn't met and I didn't have $3100 to pay out of pocket for 4 dose of Avonex. I wanted to wait until I had my MRI to see If I wanted to take it again. My MRIs have been stable and I sort of don't think I need to take it, but my neurologist who I'm not really crazy about doesn't agree.
I guess I am kind of glad that I stumbled on this post. I have to wean back on with syringes but I can switch to the auto inject and I have been considering it but I have heard that some people who use auto inject for some of the other drugs don't like it, so I had some reservations. I feel a bit better after reading your feedback.
As far as the diagnosis. I two often question it. It seems like so many people on here it took them so long to be diagnosed: 4-10 years or more. I think that I had my MRIs and blood tests in October and November, my VEP and LP in December and when I went back in in February to get an EMG my Neuro popped in and said that they had my LP results back and they confirmed my MS diagnosis.
I did finally my MRI for the first time in November. I saw my most recent one. My neuro said, this is your brain, and this is your MS. I saw three bright white spots on the left side of my brain which I thought was weird because I always assumed the lesions where on the right side of my brain since my left side is weaker, but I guess not. I also had confirmed "O Bands" or whatever, but some of the milder symptoms I have had for many years, some since I was teen, and one particular one since I was a child. So if I really do have MS, have I had it since I was a child? If I have, I guess I am pretty lucky because it must be pretty slow progression if this is as bad as I have gotten in the past 30 years. Hopefully this is as bad as it will get.
Then of course I always hear or read about those who have had dramatic relapses like waking up paralyzed or something, so that fear is always kind of in the back of my head, but I have been so lucky that I just try not to think about it. I can't think about it.
Like you, I've also had mild on and off symptoms since I was a teen. My neuro and I agree that I've probably had it since then, and I'm 54, now!
Try the new "pen" from Avonex. I've heard nothing but good things about it.
All the rest of you - now that my TN is resolving, I had a really good day, yesterday, and I was feeling like, "what MS - I don't have MS!"....until my feet began to spasm. It's almost like they said, "not so fast, sister!" Sigh...
GG, happy to hear your TN's on the wane. Nobody has enough good days, so we all need to enjoy 'em whwn we can get 'em.
Had a.good one today; saw my daughter fir the first time in a year or so. Installed a shower head for her, & used that as a good reason to introduce her and her stepmother to each other. All seemed to go well.
Sounds like we have alot in common. I was diagnosed with "white"spots on mri and also obands and something about igg index? I bruised with the syringes also...and they were painful...with the pen i dont bruise at all and it doesnt hurt either. There aren't as many injection sites...you can only use the side of your leg on your left and right side but like i said..it doesnt hurt at all.
Have you tried for patient assistance. I have it and they pay for my deductible and I only have to pay 10.00 monthly for my medication. It is great!
I also went through a phase of not taking my avonex..i hated it..but then I thought about my children and my future and decided to take it. As far as worrying I have done alot of that also....but really..whats the point of worrying about something that hasnt happened or might not even happen?
I found a neat inspirational quote "Worrying wont stop the bad stuff from happening, It just stops you from enjoying the good.
I know that this thread is kind of old, but I was "trolling" again. --- I know, I'm such a troll.
Kind of funny since I live in the lower peninsula of Michigan and they call us trolls since we live below the bridge. :)
MS & ADHD....Cursed with so many letters.
As I was saying, before I know this is an old thread, but I got one of my MS magazines in the mail the other day and there was an article in it about "Injection Fatigue". Apparently though doctor call it "injection resistance" because we must just be doing it to be difficult.*eye rolling* -- Ok Doc, come here. Let me stab you with this giant needle and see if that changes your outlook at all! --
Those quoted in the article sounded exactly like I feel, that they were able to inject themselves for the first year or so with no trouble then all of a sudden they couldn't. The only difference was that most of them had some sort of support system and I really don't. So I guess that maybe I'm finding it all a little overwhelming. I ignore all of the calls from Avonex, the specialty pharmacy, the Avonex nurse, and the nurse at the doctors office. I just can't deal with it. I don't really know if, when or how to move past this. I just figure that I will eventually because I will have to.
"The only difference was that most of them had some sort of support system and I really don't. So I guess that maybe I'm finding it all a little overwhelming."
I think many here understand. None of us raised our hands and volunteered ourselves to live with a chronic disease or to self-administer lifelong injectable treatments. I imagine people with other chronic diseases experience the same sort of thing - especially those with diseases like diabetes and cancer.
The first year after diagnosis might be the hardest in some ways - mastering skill and knowledge challenges - but it ccould be the easiest in other ways. In the second year it begins to sink in that this disease isn't going away. MS is for life and so are the treatments. I think resistance builds for most of us as we face the reality that MS is going to dog us for life and unpleasant treatments will be required (or at least recommended) in remission as well as when relapsed. It’s easier to believe we have it all under control now.
It's a hard place to get comfortable in. Maybe even impossible. I personally manage to exist there by limiting my thoughts about injections to the minute it takes to administer it each day. I try not to let it intrude on other parts of my life unless absolutely necessary. I work to actively stop myself when I notice negative self-talk about my MS symptoms or treatments. It's not denial… totally. I stay open to informative discussions and learning.
I'm glad you continue to bring your questions to the forum and vent your feelings here. We try to offer one another support but sometimes a live group or individual counselor works better to serve specific needs. If we’re going to live the fullest life possible with MS we usually have to grieve the loss of life-as-we-knew-it before diagnosis. Some counselors have special expertise in this area.
I'd be interested to hear more about the type of support system you feel you need but don't have. I bet you aren't the only one in that situation! If you feel comfortable sharing it could make a good start for a new thread, help you and give us all some new ideas.
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