Welcome to NT!! A lot of great advice, support, hugs and laughs too!!

Sorry you qualified for our little group...lots of great info here from those of us who have traveled the MS road.

I am on Sanctura for bladder urgency (or rather the generic form). I notice a great improvement when on it!

I tried Ampyra but I got stomach upset from it (which my neuro said is NOT one of the side effects...whatever. I felt better off of it).

I take Baclofen daily for spasticity. It works best for me. It helps with my gait a bit as well.

I hope that your DMD works to slow down the MonSter...give it several weeks so your body can get used to it and allow it to do it's work. It was a sad day when I got my first delivery of my DMD...made the diagnosis real for me.

Try your best to live as normal a life as possible...don't let this disease be your identity! I know it can be difficult when the symptoms are interfering with your everyday functioning...I keep a symptom journal; it helps me keep track of what's going on without constantly thinking about it.

Eat right, try to get some form of exercise or activity daily, and rest when you can...in other words, live life to the fullest. Having children is a hidden blessing; they take our minds off of what is going on occasionally...my grand babies are a real treat and make me get down on the floor (gingerly).

Keep us up to date, and know that we have lots of hugs for you...

Unfortunately I don't think I'm a candidate for any bladder medications because I have retention problems. I'm thinking of asking a referral to the urologist who I wen to before MS was even a consideration with me (Bladder issues were my first MS symptom) and maybe his treatment ideas will have changed now that he knows it's MS... I'm thinking since retention is becoming such an issue, self catheterization is likely going to be in my future. If we could find a medication to stop with the urgency, but let me use a catheter a couple times a day to fully empty my bladder, perhaps that would work. My neuro also mentioned botox injections into the bladder wall to help paralyze the muscles and therefore relieve the urgency... that's an idea too but it's also contraindicated in anyone with retention problems! I need to do something though, my problem with my bladder/incontinence is very severe.

i know how anxiety provoking it is to have to go and not be able to.
the immediate fix would be to catheterize. but, there also may be a med for that particular problem.

try to get that appt asap. with the holidays coming appts may be hard to get.
here in the US there are also urgent care centers someone can go to.

good luck with this.

Hi and Welcome to our little family

I can empathise with needing to stay somewhat private with regards to my diagnosis. You are safe here, but be aware that your username etc can show up on search engines (MSBelle was a smart move)

I am not familiar with Canadian employment laws, but you can simply do a few things to deal with any questioning looks or gossip, esp from coworkers or clients

- If a comment or questions come my way I simply say I have a neurological problem. I also leave my forearm crutches leaning near my desk at work - that alone seems to convey an explanation for my unsteadiness and wobbling. Try hanging your cane off your desk and use it regularly at work to get the point across.

-for speech issues I laugh it off as my tongue doesn't want to work today. FOr some silly reason that seems to change peoples minds that I am not actually drunk. I have also blamed it on novacaine - everyone knows novacaine can screw up your speech. Yes, it is a white lie but I do what needs to be done so I can get my work done without the comments.

Good luck with the bladder issues. Self cathing may be worth asking about, as you aren't getting relief with your current treatment.

Hope you find a drug that can slow/stop your progression. Work, kids, and MS just isn't fair - Wish we all had a magic pill!

Hi MSbelle,


I'm so sorry you've been hit with this diagnosis. I hope that the MS stays in the background for you for a very long time. For many it doesn't rear its ugly head for many years, or when it does it doesn't cause too much damage.

They don't know a lot about the connection between pregnancy and MS but they're pretty sure there is one. There's a considerable amount of research showing that being pregnant causes the MS to calm down--but that post-partum there can be a setback.

I prowl around among the studies being done but I'm no authority!

Jane's advice about how to deal with conspicuous problems you're having is good, I think. I find that "I have a bad back" or "My back is acting up" gets me past a lot of comments. If you don't seem upset about the problem, others will relax too. They're usually just concerned about you.

I saw a couple of urologists years ago but didn't find them very helpful. Like you, I've tried several bladder meds--Ditropan, Detrol, Ornade, Vesicare--but gave up on all of them, mainly because the mouth dryness they caused wasn't worth the benefit I was getting from them.

The "benefit" was having to get up only twice a night instead of 3 or 4 times. Not a huge improvement.

Thank you for all the replies/welcomes

Oh man, I'm having such a hard time lately!! I'm on Baclofen now and my bladder is worse than ever. And my spasticity is worse?! How does that work? I'm on 1/2 in am, 1/2 at noon and 1 full pill before bed. So far I'm just a lot more tired and the spasticity is excruciating! My hips hurt from it, my legs are so jumpy, my balance is so bad, I almost fall just standing multiple times a day. I am so frustrated. Fampyra causes me to relapse, now I'm off work till I'm capable of doing my job again and I feel like any med is just having the complete opposite effect for me. That, and the Betaseron I'm supposed to start is taking forever to be covered by my provincial health program! And we don't have the 1900$ for one month's worth to spend on it, so I'm stuck just waiting for the gov't to get their stuff together for me. My nurse has now submitted the request twice. It's been 4 weeks since the first one was submitted.

Sorry to vent but this SUCKS. I'm in pain, and can't do life right now! It hasn't even been a year since my diagnosis and I've progressed so much.

People seem to need quite an adjustment period while getting used to this Problem that has settled in. I know I did. It took years before I finally figured out some ways of getting around some of the symptoms I was having, and I'm still figuring out how to deal with MS. It's a never-ending battle but you will probably find things getting easier once you work out a treatment routine. It's often trial and error.

Common-sense measures like trying to get enough rest, avoiding stress if you can, and eating a good diet with enough of the right nutrients in it can go a long way toward helping you to deal with MS.

That's just my view of it, though. Take it one day at a time.

Do you know if you have a spinal lesion? It seems like those are more likely to be the culprit for the type of symptoms you're having.

Have you done a round of steroids? Whenever I've had a bad flare, I've taken IV or oral steroids and started feeling better pretty quickly. Also, if you have an infection anywhere, it can cause your MS to flare up.

I've become very cautious about rx drugs for symptoms, like the bladder meds, because of the side effects and long term consequences. I was on 27 different meds, and I didn't know anymore what was a MS symptom and what was a side effect! Try anything you can think of that "does no harm" first, like a TENS unit, or massage, or acupuncture.

I know you must be miserable. I hope you find some relief soon! I have some of the same issues, but not as severe as you. You can PM me if you have any questions you don't want to post publicly. I have no boundaries! I've been known to embarrass doctors!

I wish you wellness.

Hi msarkie,

Yes, I have many spinal lesions... I have two from T11-L1 (which are what my neuro says are causing my leg/bladder problems) and I have them in the rest of my T spine and C spine as well... also many in my brain. Spinal lesions are why I got diagnosed actually. I was having bladder problems but I wrote those off as being because of the birth of my son (so did my GP and urologist). The numbness I had in my legs I wrote off as being from a fall I had down some stairs... I hit my lower back very hard and a month later some tingly sensations started in my legs and continued to get worse. I was sent for an MRI to check my Lumbar spine (checking for trauma/slipped disc), and lo and behold, two significant lesions at T11-L1. Was sent for a brain/C-spine/T-spine MRI after that and the dx of MS was made a month later.

I've never taken steroids though I wonder if I should have this time around. I wonder if it would be too late now?

I really had high hopes for the Baclofen but all it's doing it making me very tired and the spasticity is at an all time high.

Hi MSbelle,

If you feel you are not getting some relief from Baclofen then speak to your Neurologist about a different medication. Baclofen is not the only option in treating Spasticity and a combination of a couple of medications can be used.

http://www.mymsaa.org/about-ms/symptoms/spasticity/

Steroids are used for exacerbations (relapse, attack, flare-up). Not all exacerbations require steroids. Exacerbations, for some, can resolve without the use of steroids. Sometimes steroids are a temporary solution for an on going symptom(s).