Botox for spasticity and myoclonus

[sofouko]

Hallo everybody!
I'm new in the forum but old in MS. I was diagnosed in January 2004 with Secondary progressive MS (some doctors believe that it could be primary progressive...which is actually not important).
My symptoms include: serious headaches, bladder and bowel problems, hands tingling and numbness (mainly right), excessive leg spasticity and myoclonous on lower limbs (mainly right), and of course fatigue.
I have managed to control most of my symtoms with the adequate medication but I still have difficulty walking because of my spasticity. I am under baclofen and gabapeptin for this reason but I can only walk  a little using a crutch or while holding on someone else's soulder.
My neurologist insists that I do Botox injections (in low doses as I am prone to medicine side effects..) and that they will really help me walk better. After the injections I should have PT in order to rebuild my body (I guess you understand what I mean).
My rehab doctor insists that  I don't do injections as I am OK and that this is used when people are worse than me, in wheellchair.
I am actually planning to do the Botox as I need to improve and hope my health does not deteriorate significantly...
I was hoping to hear your experience from Botox...
Bye
PS: sorry for my English but I am from Greece...

[Heather3418]

I am also thinking about the Baclofen pump.  I tried it by mouth and leaves my legs too weak to walk...wonder if the pump would cause the same problem?

Heather

[dan37]

I would buy a used or new exercise bike and use it 1-2 hours a day. The botox shot barely hurts. The truth is more it hurts the better it is. That means the doctor is injecting in a harder spasm part that the botox will attack to help. My insurance company pays $1,500.00 per 3 months then pays $450.00 for the doctor to inject it. It's so worth it!!!! If the botox does not work ask about the baclofen pump!!!!!!!!!!!!!!!!!!!!!

[dan37]

You would rather suffer then take 20 mins of tiny pinches? I can barely walk so I look foward to my botox shots. I'm even thinking about the baclofen pump.

[sofouko]

Hi there.
Believe me Heather I need to inject on more that 20 muscles and I suffer from vasovagal reaction syndrome. I believe I can stand the injections procedure as I really need to improve...I am only 27 you see and can barely walk so I have to be strong.
In fact I have asked my physical doctor to call my neurologist and make a final decision.
Sophia

[Heather3418]

I am too afraid of injections ess.  I think I'll pass up the Botox.  Since I have spasms in various muscles in my legs, I would have to be injected in various places.

After having injections that go all the way into the joint for my shoulder problem and my knee, of steriods, I think I'll by-pass anymore needles....LOL

Thanks for thinking of me though ess, knowing how badly I suffer from leg spasms.  They are giving me a fit as we speak.  The "blow-torch  man" is in there right now, with his blow-torch on high.  Dern it hurts.  Next will come another all out spasm that wracks me with pain.  Such is the story of  my life with MS.

Having my Spinal MRI today, so we will see if the spine is as active as the brain.  I do have a Lipoma (a fatty benign tumor) in my spinal at in the lumbar area.  Could be that has grown some and putting pressure on some nerves.  I won't try to second guess anything until after the MRI.  It's the laying still and TRYING to climb off the table afterward that is the biggest problem.  My back feels like it is literally going to break in half.  They always have to help me off the table.

Just another thing we endure...oh well...

Heather

[essdipity]

HI. Why not try it once and make decisions after that based on the knowledge you gained? I think your doctor is awfully conservative--you do need to get better, as you say. Meanwhile do as much reseach as you can.

ess

[sofouko]

I know that Botox is temporary and that it wears off but my rehab doctor worries because after a while you might get used to the medication.
He insists that I keep this weapon for future use. I actually want to stop be afraid of future deterioration...I need to get better!!!!
I was hoping that someone from the Forum had used it to treat leg spasticity.
Have a nice day
Sofouko

[essdipity]

Hi, Heather. You don't miss much here but I'm bumping this up just in case. Hope you'll consider Botox.

ess

[Quixotic1]

Your English is outstanding.  I don't understand the resistance to trying the Botox injections by your rehab doctor.  By its very nature, Botox is temporary.  You could try the injections, see if they allow for more easy movement and to see if they allow you to obtain more strength in the muscles.

If it works, then it is a good thing and you could continue to have the injections when needed.   If it doesn't help, it is unlikely that the Botox would do any harm, and it will wear off in several week's time.

That is my opinion.

Quix