After spending 25 minutes scanning through the messages to find others diagnosed with MS I decided that maybe it would be best to start a new thread specifically for those with the condition so we can find each other.
I was diagnosed with MS back in May of 1996. I was 40 years old, had three kids ages 16, 14 and 12 and had just graduated from nursing school. I took the NCLEX two weeks after being diagnosed. As I took the exam I wondered why I was bothering.....
But now I KNOW why! I went into remission where I stayed until recently. Fortunately prior to having my latest exacerbation I had completed my MSN and was employed as a Perinatal Educator. I don't have to do a lot of bedside nursing but I do spend a lot of time using the computer which can be hard due to the residual nerve damage from my latest bout of optic neuritis.
I am single now and almost 51 years old and worried about how I will manage to continue to support myself until l can retire. Who knows when that will be because, foolishly, I thought I would still be married and would be sharing the retirement burden with my husband. Sigh.
Anyway, I was just interested in talking with others with this disease, to see how you are doing and how you are managing.
Thanks for listening to anyone who had the interest to read to the end of my post!
I am crossing my fingers and hoping that I do not have MS, but I am being worked up to rule it out. The tingling and slight numbness drive me mad especially when I feel the tingles creeping up my left hand when I'm at work; it makes my hand very weak so I tend to use my right hand more so than my left, and at work I need both hands. I also get these shocks where I feel like someone is poking me with a needle or pen, I almost jump out of my skin with these sensations.... just as long it doesn't hit me when I'm starting an IV then I can deal with it.
I am crossing my fingers and hoping that I do not have MS, but I am being worked up to rule it out. The tingling and slight numbness drive me mad especially when I feel the tingles creeping up my left hand when I'm at work; it makes my hand very weak so I tend to use my right hand more so than my left, and at work I need both hands. I also get these shocks where I feel like someone is poking me with a needle or pen, I almost jump out of my skin with these sensations.... just as long it doesn't hit me when I'm starting an IV then I can deal with it.
I was diagnosed with mild carpal tunnel to my right hand with a ncv. Nothing peripherally wrong showed up on my left hand and my right foot which I normally experience pins and needles there too.
I certainly hope you do not have M.S., but if you do stay positive w/ your attitude. I think it helps, although it's hard to do at times.
Also, meds like neurontin and tegretol can help w/ nerve pain, ect.....I've been on tegretol for about 16 yrs. and it does help me, even though I have "break through" pain sometimes.
I have been diagnosed with Relapsing Remitting MS and been a nurse less than 1 year. I had a suspicion for many years that there was something a little off, but did not get a full blown episode until summer 06, while I was relaxing after working full time and attending nursing school full time for a year. Imagine that!
I don't tell anyone that I have MS. When you tell people that you have a chronic disease, they don't trust you to be professional and they think that you're mentally challenged! It's nobody's business anyway!
My husband, a former paramedic for 18 years, had a freakout, but he's OK now and getting educated. But my coworkers don't know. One friend and my therapist and my neuro are the only ones who know.
I am in a drug trial for an oral agent, which, thanks to MS (!) I can't remember the name of, I think it's Fingolimod. I still have a lot of symptoms, nothing too debilitating, but I didn't want to go to an injectable (and I'm a nurse!) and there's nothing else on the market right now.
So I applaud all of you nurses who are working with some tough symptoms, good for you! I hate being a guinea pig, but I hope that what I am doing will help someone else down the road.
I will be interseted to hear how things go for you on the oral agent. I have only used Betaseron and since I recently had a relapse I am guessing they may want to discuss putting me back on something at my next appointment. Oral sounds good to me! I hated Betaseron. It was SQ every other day and made me feel like I had the flu every other day. I put up with that for 3 years before I told me doc that I was going to stop, with or without his blessing! Sheesh, nurses can be a pain as patient's can't they?!!
I will be interseted to hear how things go for you on the oral agent. I have only used Betaseron and since I recently had a relapse I am guessing they may want to discuss putting me back on something at my next appointment. Oral sounds good to me! I hated Betaseron. It was SQ every other day and made me feel like I had the flu every other day. I put up with that for 3 years before I told me doc that I was going to stop, with or without his blessing! Sheesh, nurses can be a pain as patient's can't they?!!
Hey Karen,
Have you considered Copaxone? Many people, not all of course, have virtually no side effects from it other than mild site reactions. Sadly like all of them whether or not they work or the disease is just remitting is the million dollar question.
Have you considered Copaxone? Many people, not all of course, have virtually no side effects from it other than mild site reactions. Sadly like all of them whether or not they work or the disease is just remitting is the million dollar question.
Hang in there, Jules
While this may be true for most?......I got golf ball size hard lumps under my skin. Even when I stopped the med it took about a month for them to go away.
WOW...I'm so glad I found this thread. I've been an RN for a year and a half. I was diagnosed at 21, after my first semester of nursing school. I stuck with it, having flares at each semester final's time. I am now 26, taking Rebif, and have not had a flare in over a year. I'll have my Bachelor's in May 2008, and will continue to earn my Masters in Nursing Education. I work at an LTAC hospital, which is pretty physically demanding, until I was promoted to charge nurse....it's much easier on my body. No one I work with knows I have MS. I know I won't be able to do bedside nursing forever; and that's why I'm continuing my education now, while my MS is not giving me many problems.
I know I won't be able to do bedside nursing forever; and that's why I'm continuing my education now, while my MS is not giving me many problems.
Smart thinking! Hope for the best but plan for the worst is my motto. The beauty of nursing is that there is so much flexibility with what we can do and scheduling. Best to you, Jules
I'm new to this board and haven't learned how to navigate yet. I know I'm in the wrong thread, but I can't seem to find the one I am searching. This is a response to a poster in Wyoming who was asking about Tysabri. I've been on it for about a year- since it was reintroduced to the market- and it's much better for me than betaseron, copaxone, or rebiff. I'm still struggling, but the treatment has been much less onerous for me than the others. No bad effects that I'm aware of- don't be afraid.
raynefall
80 Posts
I am crossing my fingers and hoping that I do not have MS, but I am being worked up to rule it out. The tingling and slight numbness drive me mad especially when I feel the tingles creeping up my left hand when I'm at work; it makes my hand very weak so I tend to use my right hand more so than my left, and at work I need both hands. I also get these shocks where I feel like someone is poking me with a needle or pen, I almost jump out of my skin with these sensations.... just as long it doesn't hit me when I'm starting an IV then I can deal with it.
Take care!