Suzy the Figure Skater with MS from R.I.

[Laur3ncb1]

Hello. I would like to introduce myself. I have had ms since about age 28 @ 1989. I worked for 35 years going full steam ahead with lots of denial and wine at night pretending things were gonna be ok. I worked at the World Bank for 25 years and traveled a bit and then CMS for 8 years. Two years ago I quit.. Gave up. done.. I couldn't remember how to do charts we did quarterly... "Susan, we just did this last April!" I just was granted SSDI disability a few months ago. Now I substitute teach French, Spanish and ESL during the school year. I've been on Copaxone for 15 years. I am now doing Ice dance in figure skating and my Russian coach (es) hold my up. Other than balance and yearly exacerbations, I can still more or less move my legs on time with the music. God I hate this disease. Because they don't speak English well, they don't really know what is "wrong" with me but I pay and pass tests so they hang in there. I am grateful to have GREAT insurance through my husbands job and TRICARE. However, my new upset is that my catheters (7 a day) cost over $500 a month are not covered by any insurance. This is a relatively new symptom. I can't fully void. I always feared a wheelchair, never ever imagining my bladder and memory would be worse than my legs????!!!!

[greaterexp]

Laur3ncb1 , My! You're a busy person! You've accomplished and still are accomplishing so much!

I think the cognitive changes are the ones many of us dread the most, but I'm sorry you're now dealing with bladder issues, too. Do you feel the Copaxone is still effective?

I'm glad you've found us here, and I hope we get to know you better. With several years of experience with MS, you'll have lots to share.

[Laur3ncb1 in reply to greaterexp]

That's a good question: Is Copaxone "still effective". I KNOW it is safe and I tolerate without a hitch. But I really wonder if I could squeeze more life out of me with a more aggressive drug?

[greaterexp in reply to Laur3ncb1]

I'm asking myself this question right now.

[Laur3ncb1 in reply to greaterexp]

I see neurologist next week.. may ask him although he has always said: you're doing ok and your MRIs are stable and the other drugs don't have the history of use like copaxone. If it not broken lets not fix it which I have concurred with him up until now.

[erash]

Hi Laur3ncb1

What awesome life accomplishments (and courage -- figure skating! )

Like you, I never imagined the cognitive effects of MS.

I think NMSA or MSSA might have resources that might help re. the caths. Consider Contacting them?

[Laur3ncb1 in reply to erash]

Stupid question but "how best should I contact NMSA or MSSA?" Thanks!

[erash in reply to Laur3ncb1]

Jesmcd2 or johnMSAA

Do you know if/how Laur3ncb1 would contact MSSA and whether they can assist?

I volunteered for the local NMSS and they helped with supplies- wheelchairs etc. Perhaps see if there's a local office you can contact.

[Laur3ncb1 in reply to erash]

thanks!

[kdali]

Awesome story! I'm glad you're are keeping on, however you can. Catheters can be reusable, and that may be why your insurance denies the 7 per day kind but may pay for the reusable kind.

[ddeadred]

Suzy, like you, I'm an old MSer dating back to 1986. Had similar work history and refuse to give in to the MonSter! Copaxone for 12? years here etc.--we're very alike! My question to you: how did you know it was time to cath??? I have yet to head that direction, but find that it takes allot longer to empty my bladder sometime requiring me to sit back down and continue or run right back to the pot knowing I did not get it all out. I drink, drink, drink all day long to flush my system to protect my kidneys as several meds I take have required testing of my kidneys for good function (Ampyra, Cymbalta--walking drug store with better living through chemistry)...

So, how did you know cathing would be best? And is there ever going back to not cathing?

PS: retiring was one of the most difficult things I've ever done, but I'm so happy on the other side of all that... still work my butt off with 3 pupz and a house and sizable yard to maintain on my own, but STILL miss the craziness of working 60 hours a week as a gallery owner...

[Laur3ncb1 in reply to ddeadred]

I had the good fortune of having a PA, or whatever her title was, who, after I came multiple times to the Urologist with "bladder pain" and blood in my urine on my annual physicals (which they all said what somewhat "normal").. and the doctor kept diagnosing it as Interstystal (sp) cystitis--- pain in the bladder of unknown cause. Well, this young lady said, go pee. So I did . Then, when I came back, she took out an apparatus that she put on my belly over where my bladder would be and "measured": and she said "you still have a coke bottle worth of urine in there....and you just peed. It would be very wise if you used catheters. I will write you a prescription." I said uhn? I almost cried.. but then I said how many a day? and she said 7 to 10 depending on how much you drink. Two years later: no pain, no blood. Bills of $500 a month which we can afford but it is the idea of it.. .who makes these things and who buys them? I do use a REALLY good high tech brand that is compact and goes in my purse, my pockets, anywhere and everywhere. Long drives are no longer a race to the next bathroom.

[Laur3ncb1 in reply to Laur3ncb1]

I am glad I "am no longer working" as well. I am starting to have days that I actually feel good. I have been whistling and my daughter is like, what's going on mom? I don't know, I just feel good and haven't for years!

[erash in reply to Laur3ncb1]

Laur3ncb1

So a one time assessment for PVR (post void residual) likely with a sonogram led to the decision to self cath?

I would wand further urodynamic testing...perhaps they did but you just simplified the story for the chat room.

Granted, cath is a solution for neurogenic bladder but I wonder if an alpha blocker like Flomax might have also helped? I have rx'd in both men and women with incomplete voiding (not neurogenic bladder necessarily).

Research shows mixed results for alpha blockers with neuro bladder???

ddeadred cymbalta can cause urinary retention. In fact it was once considered as a treatment for women with over active bladder symptoms.

[ddeadred in reply to Laur3ncb1]

not to that point yet which is good as I simply don't have funds for buying them...

[WAshingtongirl]

Laur3ncb1 , welcome! You've come to the BEST place to meet, encourage, and be an encouragement to others just like you! Wow! You are an inspiration! Although we all can't ice dance or teach as you do, you'll meet others here who excel and meet the MS challenge as you do. We're happy you're here. 💕

Here are some numbers as mentioned by erash : MSAA: 800-532-7767 ext 154 (M-F 8:30-5) or the NMSS: 800-344-4867.

[Laur3ncb1 in reply to WAshingtongirl]

Thank you so much! Will take note and give them a call tomorrow.

[WAshingtongirl in reply to Laur3ncb1]

Oops! Please call the number johnMSAA wrote below. The number I listed for the MSAA is actually for the dyslexia association. 😉

[johnMSAA Partner]

Welcome as well, Laur3ncb1 ! Wow, what an interesting life story so far!

As erash and WAshingtongirl mentioned, feel free to contact MSAA's Helpline and one of our Client Services Specialists may be able to find some resources for you:

* Phone: [phone], extension 154, Monday through Friday, 8:30 am to 5:00 pm, EST

* Email: [e-mail]

* Chat live via your computer through our online MS Chat feature: mymsaa.org/chat

- John, MSAA

[Laur3ncb1 in reply to johnMSAA]

Thank you so much!

[WAshingtongirl in reply to johnMSAA]

Thanks for coming to my (and Laur3ncb1 's) rescue, johnMSAA !

[gatorman15]

Welcome Laur3ncb1. This is a great site to have found! Look forward to your input and we're always hear to listen.

[Laur3ncb1 in reply to gatorman15]

Thank you so much!