What does your spasticity feel like

[AriD]

Just wondering how other people experience spasticity. I have had much more pain in my legs recently. It feels like a band around my ankles and sharp pressure in my feet. My lower legs have this painful pressure pushing into the floor. My toes curl under and outward and then I have regular old cramps in my thighs and calves. Neurontin used to help. Not so much anymore. It's definitely worse at night too.

Is this what others experience too? I'm so scared this is leading me back to needing assistive devices again (cane/wheelchair). Has anyone had these type of symptoms and not had deterioration in their walking ability?

[22cyclist]

Wow, you really need better medication for spasticity control. Mine feels like tightness in my legs, a pulling sensation, pain, and cramps sometimes. I take 80 mg of Baclofen a day, and Zanaflex as needed.

Lisa

[AriD]

Hi Lisa

Thanks for your response. My neuro had me try requip but that made dizzy, nauseous and gave me blurred vision. Forget that one. Two nights ago I started have spasms in my jaw. Never had that before. Scary

Do you have any side effects from baclofen? Don't know whether to try something new or deal with all this. I take so many meds now it's crazy! But want to feel better and continue to work as long as possible.

[22cyclist]

Baclofen is a skeletal muscle relaxer specifically for MS. In the beginning it does make you tired, but you can taper up on it. This is the best drug for spasticity for MS, can't believe your neuro didn't prescribe it. Thats the only side effect. Now I could probably take a bottle and walk around-I don't get tired at all from it.

Take care
Lisa

[AriD]

Thanks Lisa

I have had trouble with my current neuro. Changed about a year ago because of insurance changes. She keeps forgetting who I am and going over my history so we never move forward. Now with all these changes going on, it's very frustrating. Requip was her prescription for the spasms. Bad side effects and didn't help. No surprise!

I have felt a bit hopeless the last few months. Really worried about where I'm heading. Most times I feel like it doesn't really matter. I'm currently taking 16 meds a day plus my DMT every other. How many more can I add anyway?

I know I should call and talk to her about these new symptoms but me and my pt tried that in March when I was definitely having a relapse. She never responded to either of us. My ophthalmologist said I definitely had a relapse at that time which should have been treated. Maybe it wouldn't have changed things. Hard to know.

Anyway sorry to drag on. Hang in there. I hope you feel better soon

[22cyclist]

Get out of there, get a new one. You are too sick to deal with this. There are plenty of tertiary care centers with MS specialists who don't forget you...they may need prompting, but thats what the chart is for. You should be able to reach them by phone and by email. If you can't get this, the next best thing to do is just to hook up with a great PCP who can run interference with you. They can be the go between. Mine does that when no one answers me. I get a call that day.

I wish you the best my friend.

Lisa

[AriD]

Thanks Lisa.

I know you are right. As are my coworkers ( I'm a nurse) and my PCP. I mostly feel so discouraged that it's hard for me to move forward and make the change. I'd love to go back to my old neuro but it would cost me a lot. My current neuro in years past was renowned for her work with MS patients. Unfortunately not any longer.

I appreciate your support. I hope you feel better soon.