My Spasticity Story....

[Fancy1959]

Hello everybody it's Fancy1959 and I'm doing my best to work back into the chat room. I wanted to share my spasticity story with you all. Mine usually hits worse after I wake up. But that is not the only time it hits. Occasionally I have severe spacidity during the day as well. Mine typically hits in my legs and go through my hips. It becomes so strong that I literally cannot bend my legs at all and I have pain in the legs and in my hips. I've been known to have it pull me out of chairs because it affects my legs and hips and I lose my seat. Once I get up then I make sure my walker is handy and typically after about 20 to 30 minutes I feel pretty confident that it's gone. My husband used to think that I was just stretching really hard and he'd ask what I was doing. He has finally realized that I have no control over these spasms and he is more quick now to offer assistance or keep me from going out of the chair or whatever I'm sitting on. It has gotten worse over the past 6 to 9 months but that is falling right in step with my disability in general.

If you haven't already, please share your spacidity story with the chat room. I think it's vitally important that we realize that we're not in the situation alone. Kaityn, one of our administrators is actually trying to put together an informational blog about muscle spasticity. So let's share and educate as we learn from each other stories. Thanks Fancy.

[kaitlynmsaa]

Fancy1959 - Thank you for sharing your experience with the community. As you are well aware, spasticity is a tough symptom that affects many people with MS, so the more awareness that we can spread about it, the better! Anyone who feels comfortable sharing, please do so! - Kaitlyn, MSAA

[CalfeeChick CommunityAmbassador]

Thank you for sharing your story. I can't hardly believe how close it is to what's been happening to me in the last 2 weeks. All new to me. I've had the calves of my legs feeling stiff, tight and at the same time like stretched rubber bands. I have had some "catches" in my hips which I attributed to arthritis. Who knew. I've had 3 major charley horses or spasms in my left leg, each one leaving sore muscles and weakness in the leg. I've got a request into the doctor for a RX of Baclofin. Hope I don't have to make the 90 mile trip in the heat we've been having. It's been over 100 since last Sunday and expected 110-111 Friday and Saturday. Yikes!

[Yooper]

Fancy: I hope and pray you can get your spasms to happen less and be of shorter duration. I have discussed a baclofen pump with my doctor due to lots of spasms.

[Fancy1959]

Thank you CalfeeChick and Yòoper for showing your concern about my spasticity issues. Make sure you share your spacidity story with everyone as we are trying to get people to share what spacidity does to them for Kaitlyn's new webpage on various forms of spasticity. Come on chat room we need a bunch of spacidity stories sent in so they can be included on this Kaitlyn's webpage. This web page is designed to help anyone dealing with spasticity. It would be another resource for us to go to when we have questions about this beast that takes control of our lives. It can only help to benefit this amazing chat room if we get behind Kaitlin and get involved in sharing our stories about our spasticity issues.

[cljones]

Fancy1959

[cljones]

Fancy1959 I have been having some real problems in this area. When I wake up in the morning I try to get up and my legs get so stiff I can't move them until the spasms stop. Then when I do stand I can't walk for a while. The doc put me on Baclofin a couple of weeks ago. It seems to have helped. Sometimes when I am trying to go down steps my leg won't bend and I am afraid I will fall. I have to give it a few minutes then I can bend it.

[KarenUSA]

I also Have spasticity in my legs. An intrathecal Baclofen pump has helped me keep moving. i've had the pump for 6 years and can still drive and walk with a cane or rolling walker. Wish the pump was able to fix my balance.

[Fancy1959]

KarenUSA, it's Fancy1959. I too wish that anything would help improve my balance. It's one of my top three problems with MS. It is by far the most dangerous due to the falls I have taken in the close calls on dozens of other Falls I am almost taken. I am praying that Ocrevus is the key and will my improve my balance significantly. I will be sure to keep the chat room up-to-date on any findings I experience while on Ocrevus.

[Cunning100]

Hi

I have also been tortured by spascisity... between MS Hugs and my right side becoming stiff as a board and waking me from a sound sleep...I was taking 80 mg of Baclofen daily AND also taking Dantrolene ...needless to say all those drugs were making my brain mush and I always felt tire..yes over the MS tiredness. This past November, I listened to my physiatrist and my neurologist and took some action against the spasticity. On 11/1/16 I had a MEDTRONIC baclofen pump implanted under the skin on my belly with a catheter weaved through my body...attaching into my spinal column... Now I get my baclofen (and pain meds) directly through the pump directly to the source of the problem...my spine. ITs been like a miracle..not only am i off baclofen orally, and the dantrolene, but also off vesicare (which I was taking for my spastic bladder)... I'm still having the drugs titrated ..(leveled off) to the correct dosage for me...has anyone else out there heard of this? Tried it? have one?

[TonyiaR7 in reply to Cunning100]

I heard about this. I think I am willing to try baclofen pump again. The baclofen pump trial took away too much spasticity from my legs. At the time I was having para spinal muscle spasms. My back was killing me. And the pump could not address my spine.We did Botox injections along my spine; it gave me some relief at work. I was getting the spasms from sitting too much in my office at work. Eventually I stopped the Botox injections because my back was getting too weak. Then my doctor was considering me doing the baclofen pump trial again because my legs and feet were getting worse. My neurologist wasn't excited because she saw cases where the pump was not successful. But when it placed perfectly, it was fantastic. I am trying Botox injections in my legs and feet. The problem with Botox injections is that you are on a 3 month roller coaster ride, you get better then the Botox wears off and you have get injections again. On top of the Botox I take tinazindine. So I want to try the pump again.