I would love to say one day, “I used to have MS.”
But since that’s not going to happen… at least not this weekend, I think I will stick with reality.
In my quest to escape multiple sclerosis, I’ve been weighing the possibility of getting a Baclofen pump implanted in my abdomen to combat my tight leg muscles. According to the Baclofen pump website,“This technology is to loosen overly tight muscles. The key is a surgically placed pump that continuously delivers medication to your spinal cord fluid.”
Sometimes my legs are like logs and then others times they are “normal”. When they are log like it can be pretty grueling to accomplish everyday tasks. Making it to the restroom on time is more difficult and getting in and out the bathtub is nearly impossible.
In my dream world, I’ll get this pump that delivers a muscle relaxant and then with a little strength training, I’ll be able to walk with a walker again. I just don’t know if that’s how it actually works in the real world. In all likelihood I’m probably not stiff enough for this therapy. Also, I’m not sure if Medicare covers it.
The truth is, my muscles are too weak for walking so tight legs may not even be the main problem. I am currently taking the Baclofen pills so I may just stick to the oral medicine.
Either way, the one thing I’m sure of is that there’s no escaping MS.
But that won’t stop me from trying.
Another bacoflen pump patient story; this one, with better results.
http://stuffcouldalwaysbeworse.blogspot.com/2013/03/one-year-with-my-baclofen-pump.html?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed:+StuffCouldAlwaysBeWorse+(stuff+could+always+be+worse)&utm_content=Google+Reader&m=1
Judy, Thanks but it doesn’t look like its going to happen
I take the oral baclofen, 20mg 3x daily. That is a low dose according to my doc, but it does work for my severe spasticity.
My doc has mentioned the pump and added the main advantage is that it directs the baclofen right to the needed area. Whereas the pill goes through your entire body…(that explains why you get drowsy!).
I’ll be interested in hearing your decision…and the positive results!
Sock, Thanks!
Nicole,
I take 80 mg of Baclofen daily, I still walk, but not gracefully.
I thought I was not ‘bad enough’ for a pump either.
Neuro suggested it, I moved forward, now I am set for the trial on March 26th.
I am very excited of the potentials.
I am in contact with the person who writes this blog, that someone mentioned. She has absolutely no regrets, BTW.
http://profspazz.com/2013/02/07/mrsa-baclofen-pumps-and-mormon-crickets/
Faye
It’s funny. I’ve long believed the only constant is presence of change. With MS, as much as I don’t like it, I find myself fervently hoping for less change. As I fight against accepting the nature of MS as a progressively degenerative condition, I still resign myself to the change in my expectations. It may be the worst part of MS is my growing acceptance of what is because of a belief things are likely to get far worse before/if they get better. I more or less accept the pains I have now despite my wife saying I should take my pain meds more often. The problem is these are a rather last ditch effort for me as most drugs don’t work which makes me reluctant to use what does out of a fear my body will become acclimated/resistant to the drugs.
I think that would be my number 1 concern with an implanted device giving a drug. Will my body need more over time if the drug becomes less effective? Will there be a way to adjust it or the drug it is dispensing? Granted, my body is a freak and seems to make drugs and watches stop working over an incredibly too short duration.
Good luck. I hope what ever you chose works for you.
well lived,
I honestly never thought to ask such basic questions! Watches always break on me too!
Hi Nicole ~ I was just diagnosed on Nov 30, 2012. I am 34 with four kids under the age of 7 and I find myself drawn to your blog because you are open, honest, and real. You are upbeat for the most part, but like any of us, have bad days to go along with the rest. Thank you for your honest. This all scares the tar out of me, but as I’ve told everyone else around me, I like to be informed – good or “bad.” Hang in there – your attitude will get you through a lot.
Lindsay
Lindsay, Thanks for reading. It seems you were just diagnosed and you are already blogging! Good for you!
Oh yes….I have been blogging for years…I guess now I have new content to write about now… 😉
Nicole,
Hello….just wanted you to know that this was the second time I visited your blog..I truly appreciate you sharing your journey. I recognize that you still have fun and go out meet and greet people and just enjoy life..I am using your positive proactive stance as a catalyst to adjust and improve my attitude..Thanks for sharing and take care:0)!
Shareba, I’m glad you came back!!!! I didn’t scare you off! Let me tell ya, its hard to AlWAYS be positive, I just don’t like the alternative!
Hi Nicole,
I am in the process of possibly getting the Baclofen Pump.
A week ago, I went to see if I was a candidate for the pump. They examined me, asked how much Baclofen I take, if it works, etc…
Next step is a trial, which I have on March 26th (I am waiting until my mom is home from her trip) so she can go with me.
If the pump will work, you supposedly will know when you do the trial.
I totally know there is a slight risk. Life is a risk.
I was on Tysabri for 4 years. That was a risk.
I walk now, just not gracefully.
I saw my Neuro yesterday and he thinks a pump may solve alot of my gait problems.
Good Luck,
Faye
Faye, Good Luck to you. May I ask how much Baclofen do you take now orally?
Thanks for reading.
Nicole
I have been reading your blog and enjoying your comments and thoughts about the trip we are on with MS. I got the pump amost a year ago and have different thoughts than the ones that were written about in especially the fijrst comments. Has it been a miracle NO, am I glad I did it even with the various issues I’ve had YES. I would be happy to talk or email with you if you want to know more. It is quite the decision and I am sure that just like this disease every person is individualized.
Good luck and feel fee to email me
Gretchen
Gretchen, You’re right , it’s quite a decision. I just don’t know if I’m that spastic all the time. I would love to chat per email, you can contact me at [email protected] Look forward to hearing from you.
The concern I would have with the pump is how does it know how much to inject, and can it be adjusted day to day. I have Primary Progressive and have since 1985, I take the oral baclofen and take more on some days than others. I also have those Iron-clad legs that the meds can sometime help, bbut not always, I also have days that aren’t too bad. there is also the point of “directly into the spinal chord that is an issue with me. I have had spinal taps more times than I remember and they usually leaked and I spent days in the hospital. I’ll wait on this for now…. I have been following your blog for awhile, keep up the good work…
Bryan, Sounds like you have all the questions I have! Plus, really truly , I just want to walk again and I’m not sure this is the way about it, truth is next a cure, I don’t think that exists. Thanks for following my blog and I’m sorry it took me so long to get back to you.
Nicole, I understand your desire to have the pump installed. I also know that with your medical background you will research this carefully and intelligently and will make the right decision; hopefully, with great results. I do, however, want to make you aware of two particular stories of MSers who had the pump installed with unfortunate results. Forgive me if this is too much information. I would just hate for you to experience anything remotely like what these individuals experienced. The first two links are related and should be read in the order given. The last link is standalone.
http://www.thegreekfromdetroit.com/2012/07/intrathecal-baclofen-pump-warning.html
http://www.thegreekfromdetroit.com/2012/09/medtronics-intrathecal-baclofen-pump.html
http://profspazz.com/2013/02/07/mrsa-baclofen-pumps-and-mormon-crickets/
Judy, this is exactly the type of info I’m looking for. Thanks for sharing.
Nicole.. you keep on trying and of course share with us when you do. Reading your blogs give me a read that I can relate to , helpful information, food for thought and HOPE.. you are insightful and honest. The fact that you touch on the very concerns that many of us have either already experienced or may in the future is important. And since we get to see your beautiful pictures.. of you smiling all the time… can only make us realize that it’s about “attitude” as well! Keep on doing what you are doing !
ellajean, The Jury is still out on the pump even though I use to work for the company that manufactures them. I’m still looking for more input from patients.
Hi Nicole, I have been following your blog for a few months and it has helped me a lot. I have had MS since 1969 so I am 1: Older and 2: still hopeful. There were no MS drugs when I was first dx so I now am SPMS. I can still walk with a forearm crutch, haltingly, but not sure how long that will last. Over the years I have tried diets, exercise and all the things that docs say to do. I’m sure some of it helped, but the disease progresses. My neuro says that my MS is like an iceberg; even though the symptoms that show may be moderated, the ice under the water is forever growing. New Normals is a wonderful title. And that’s the way I live my life. Blogs like yours make that so much easier. Thank you!
Diane, Thanks for sharing. Yes we have come long way med wise, but we have a long way to go! Thanks so much for reading.
Thank you for that post. It is so reassuring and helps me feel less alone when I read your thoughts. Contemplating all of the ” what ifs” and “maybes” must be part of our every day lives I guess. It is helpful to know I am not the only one juggling these questions. Thanks for your blogging!
Marie C., Thank you for reading! Yes life is certainly one big ball of questions
I am sorry you are feeling pain and discomfort. It’s important to never give up but have you tried non-medical solutions like changes in diet? Maybe there is something you’re eating that is triggering your muscles? I don’t even know you but the thought of you getting something implanted scares me!
Diana, It scares me too!
You keep trying. I don’t have health insurance or any money coming in on my own so I fight alone along with antidepressent. If you have the help do what you think is best. Keep on fighting! Hugs.
Nancy, I apologize it took me so long to get back to you. Yes, I will keep trying. It’s so unfortunate you don’t have insurance. I too rely on my anti depressant to make it through. Thanks for reading.
Nicole,
way to go “Keep on keeping on”.
After all, Trial and error is The one thing neurologists and MSERS, have in common!
Angela, You’re right!