Have you had botulinum toxin injection?

[rjoneslaw]

Has anyone had botulinum toxin injections?

If so what did you experience ?

Would you do it again?

How long did it last?

[Karen-x]

A woman in my MS support group had it done in her hamstring. It stopped the spasms but made her muscle so weak she could barely walk. She said her Dr injected the recommended dose. Maybe you could ask some questions in that regard.

[rjoneslaw in reply to Karen-x]

@karen-x

Thanks

[Yooper]

Rjoneslaw: I had it done a couple of times for my hamstring. My hamstring would get so tight it felt like it would tear. It did help the tightness, but left my leg feeling like dead weight. I have not had it done after the second time. I now use a massage roller called The Stick and it helps.

[rjoneslaw in reply to Yooper]

@Yooper

Thanks. I read an article and it would compare it to botox so I thought it was something else. It is the generic form of botox.

I had told my dr no when she first pitched the botox route.

My rehab dr explained to me why it's described that why it's basically for cost reasons.

We all know that just because something is advertised as being generic it's still the same thing under a different name just so the company can make a profit.

Thanks again for responding.

[Jesmcd2 CommunityAmbassador in reply to rjoneslaw]

rjoneslaw have you tried the botox?

[rjoneslaw in reply to Jesmcd2]

@jesmcd2

I have not. My my neuro rehab dr tried to get me to do it but that isn't something I want.

After reading the article I was just wondering if people had it done

[Jesmcd2 CommunityAmbassador in reply to Yooper]

Do you find this 'Stick' works Yooper and where do you find this miracle roller?😀

J 🌠🎄

[Yooper in reply to Jesmcd2]

The Stick is a massage roller with ceramic rollers on a maybe 18" rod with handles on the end. I bought mine on line. I don't remember where but I searched for the stick massage roller. It works very good for massaging my hamstrings. It's a lot cheaper than getting a massage and I can do it myself. Wishing you the best. God's Peace

[rjoneslaw in reply to Yooper]

@yooper

I also have the roller massage stick

[eharoot]

have had three rounds of Botox in my calf muscles. three months apart. the only thing I can tell you is that I could wear my AFO more comfortably. we're waiting 4 mos. this time to try to tell if it really makes enough difference. didn't really notice side effects

[Jesmcd2 CommunityAmbassador in reply to eharoot]

Well wearing your AFO more comfortably is always a good thing.😊 I'm supposed to get mine next wk.😢 eharoot

J 🌠🎄

[palomino27]

I did botox in my legs for spasicity. It works for about 3 months and did help a bit but made my legs weaker after. I would never do again for that reason.

[rjoneslaw in reply to palomino27]

I didn’t do it after everyone said you would become weak with the injection

[RoyceNewton]

Yes, She Who Must be Obeyed has had BOTOX for her bladder, recomended by another ms lady. They both say it is great and easy to have done. Her bladder issues cleared up for about 6 months, looking to have it again soon

[rjoneslaw in reply to RoyceNewton]

I was going to get it for my for muscles spasms but I didn’t do it because my leg would become weaker

[RoyceNewton in reply to rjoneslaw]

I did not know that.

[Goldilockssearching]

I had it done twice last year in my calves for overactive nerves. I thought it helped me walk better bc my L foot wasn’t folding over anymore and they were less spastic. This was not a good enough answer for the physiotherapist though and he refused to do it the third time saying “I” didn’t think it was helpful. Apparently I didn’t say what he wanted to hear? His 10 ft walk in the hall didn’t indicate any issue-probably bc I need to walk further before it becomes an issue.

So, now my foot folds over sometimes when I walk and have to deal w the spasms when my calves are acting up.

There is not anyone else my neuro knew of to refer me to instead.

No, I didn’t have increased leg weakness.

His recommendation was every 3 months. My 2 doses were 4 months apart bc I was advised by the pharmacist thru my Neuro NP (whom I asked the question and she consulted) to wait a month after my O infusion. He didn’t agree bc the drug info sheet didn’t state that.

I wasn’t chancing it and I don’t think he liked that (he was a bit full of himself).

Anyway, you’ve done MS Gym right? Trevor is anti-Botox bc it is a toxin. Made me feel better and look at it as something I guess I can live without 🤷‍♀️

I use Theraworx foam when my calf spasms and it helps calm it down. It’s $20 and can be purchased on their website or any drug store chain.

I suppose you won’t know for you until you try as we are all different. Good luck either way!

[rjoneslaw in reply to Goldilockssearching]

I never did the injection cuz people said it wasn’t worth it

As for the ms gym I still going strong. I’m doing standing Coach T created my next program you can see it below

R1: MS SPINE + CORE PROGRAM -- rest 60 min-- MS BALANCE CAMP + FOOT DROP -- bed time: 5 min MS BALANCE CAMP/ 5 MIN BREATHING

R2: HIP MOBILITY (alternate videos 1-3) + CORE PROGRAM -- rest 60 min-- MS BALANCE CAMP + UPPER BODY L3 (this may be missing piece of your core work: just do ONE a,b or c) -- bed time: 5 min MS BALANCE CAMP/ 5 MIN BREATHING