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Multiple Sclerosis Community
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1396846 tn?1332459510

I'm back!

Its been a while since I have posted on here. Not even sure how many people are still here from the last time I posted. Little bio: my name is Paula, I'm 43 married with two kinds, 2 grandsons and a granddaughter on the way. I was diagnosed with MS in 2010 but symptoms started in 2008.

I was staying pretty stable for a while, trying to find a therapy that will work for me. I have been on copaxone, gilenya, avonex and back to copaxone. Seeing my neuro tomorrow to talk about the new plegridy twice monthly injection.

I have been progressing, my hips and legs are getting worse by the day. Some days better than others. I got a job at a pediatric office and I am starting to think it was a mistake, too many sick children, keeping me sick which in turn is keeping my immune system active and we all know that is not a good thing for us MSers.

Anyway just wanted to see what you all do to deal with the spasticity and the pain that comes with it. I can't stand when I feel like my muscle is ripping with each step I take. I have been staying heavily medicated but that isn't what I want either.

Thanks for your input!

Paula

8 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hey you, it was so nice to see your face pop back up, welcome back! :D

oops owwwwwwwweeee sorry i'm slightly distracted lol i just fell over and landed on my hands and knees at my husbands feet and despite my protests, he's still insisting i'm not worshiping him often enough lol i'll have to get back to you later.......
667078 tn?1316000935
Hey Paula'
     Sorry about the symptoms. I take two Zanaflex several times a day for spasms. I hope you are enjoying the grand kids.
                                         Alex
5112396 tn?1378017983
I absolutely remember you! Congratulations on the impending birth of a granddaughter. But boo-hiss to your current symptoms. I've little knowledge of Ohio laws or your personal stance, but I know that many people find medical marijauna of assistance in this specific MS arena. So throwing that out there.

JJ, hope you've gotten back up and are still in one piece! Your husband may be fantastic, but I think you took it a little too far! ;p
1917408 tn?1421952040
Hi,

I remember you, too. I was more of a lurker than a poster in 2012 but I do remember you.

I haven't progressed much since 2012, the exception to that is that I've developed spasms in my quadriceps and hip extensors. Fortunately, I work in a Physical Therapy Clinic and the PT has been helpful in trying to find some relief for my spasms. I agree that being heavily medicated for these spasms is no way to live, and I have to be operating at MY 100% to be able to do my job. Meds and stretching can give me up to about 40% - 50% relief but she has experimented with dry needling and I can get 90% or more relief from one dry needling treatment and continue to benefit for about a week. That is by no means long term but a week without that kind of pain feels like quite a gift. I don't know if your insurance will pay for it, because there is some information out there saying that it isn't effective for people who's pain comes from a CNS disorder, but anecdotal or not it helps me a lot and makes necessary travel, etc. a whole lot more comfortable for me.  
1396846 tn?1332459510
Thanks ladies, I am taking zanaflex the thing is I work in a pediatric office so can't get too drugged up as to not make mistakes. I am scheduling and triage because I can not walk like I use to.

I am sitting in my neuros office as I type this, hoping he can help me somehow.

I am going to discuss Plegridy twice monthly injections to see if he thinks it is a good option for me.

It's starting to really interfere with my work and that needs to be addressed. I'll be back later to update.

Paula
987762 tn?1331027953
COMMUNITY LEADER
Hey Paula,

I was going to recommend physio and possibly changing your medication to see if something different gives you better relief.

Please let us know what your neuro is going to recommend for you!

Cheers...........JJ

1396846 tn?1332459510
Well Neuro didn't say or do much. We talked about what has been going on, he did recommend increasing my zanaflex but I can't function at work if I increase it. He told me stretching may help.

Have you heard of Plegridy? I am considering it but the blood work prior to starting is scary. Ever heard of the JC VIRUS? I haven't but have to be tested for antibodies. Just a lot of information that has me second guessing.

I'm at a loss right now. Not sure what to do. I will get through this like I do everything else but it stinks!!!! With a capital S T I N K S!
987762 tn?1331027953
COMMUNITY LEADER
Hey Paula,

Technically stretching should help somewhat, but it's a little disappointing that your neuro didn't arrange a referral, for you to see a physio or occupational therapist to get your spasticity assessed and a tailored program worked out for you. Have you considered botox? Below are informational articles and how to pdf booklets on spasticity, that you might find of some help......

http://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Spasticity  

http://www.activemsers.org/exercisesstretches/advicestretchoften.html

http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-Stretching-for-People-with-MS%E2%80%94An-Illustrated-Manual.pdf

http://www.msnz.org.nz/document.doc?id=30

http://bikenct.nationalmssociety.org/docs/HOM/Stretching.pdf

http://mssociety.ca/en/pdf/EverybodyStretch.pdf

Cheers...........JJ
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