Follow-up Neuro Appt Today

[anon07072023]

Hi Everyone. I went to see my neuro again today.  I'd say that she's hot - but really only in a brainy kind of way. haha - (this is for Rena from her hot neuro post). :-)

My neuro is bumping me up to 80 mg/day for my Baclofen. It's kind of scary, because I think this is the max oral dose before you have to switch to a intrathecal baclofen pump.  I mean, c'mon, I've only had symptoms for 3 yrs & a DX for a only 1 1/2 yrs.  If I'm needing this much, this soon, how much more in 5 yrs from now?  My spasticity in my pelvic floor muscles shows that now I'm up from 5 to about 9 or 10 for muscle tone, when it's only supposed to be at 1.5 at rest - not good.  And the spastic muscles are turning/re-locating my hips.  I'm afraid of getting a pump; there's way too many risks.  My PT is suggesting to perhaps try "dry needling."  (This has nothing to do with Baclofen). I'm not for sure what the heck this is - I still need to look it up.

I'm continuing with the Ampyra for walking. However, we're just doing the dose in the morning, since the evening dose keeps me up at night. And she's pushing me to go ahead and take the Klonopin at night that she prescribed for me a few months ago. She said that I don't need to worry about it, since it's such a low dosage.  And she told me to schedule another visit with my urologist for retention.

I'll follow-up with her in a months to see how the increase in Baclofen is helping.

And thanks to Rena's post on her dental problems, I'm also going to see the dentist.  I don't want to be in the situation of losing any teeth because of my dry mouth from all of these meds.

OK, thanks for reading/listening...
Kelly

  

[anon07072023]

Thanks Ren. I did try the Klonpin last night, and I did seem to sleep more soundly, with less waking up, trying to get more comfortable.  
If it helps with the spasticity, it would definitely beat getting a pump.

Thanks for sharing your experience with the dry needling. You're right, the PT did say that it goes directly into the muscle. And in my case, that might be a really sensitive area - unless she's thinking about maybe doing it along the inside in my adductor muscles in my groin area. That might be less painful than the other area (GULP!).  

[teenyturner]

Hi Kelly,  I've had dry needling from my physiotherapist.  It's kind of like acupuncture but instead of placing the needl in meridian points the put them in the muscle where all the tension is.  Then they twirl it around a bit.  It's a bit more painful than acupuncture but it does tend to take the knot and tension out of the muscle.

Unfortunately, I also found the relief was minimal and very short-lived.

Regards

[anon07072023]

They measure the tone using biofeedback. Sensors/Electrodes are placed around the area, and then you can see the readings on the computer monitor.  It looks kind of like a rolling graph that's constantly moving. And what's weird is when I try to pretend to go, there's no extra movement. It just sits there at that high tone level.  I guess she said it's kind of a dyssynergia - where your brain and your muscles aren't communicating/coordinating good with each other because of neurological dysfunction.

Yeah, I don't really want to take the 80mg. Maybe I should just try taking it a couple days before each session to see if it makes a difference. And I'm not sure if your body builds up a resistance or whatever it's called for Baclofen.  So, later on as you use it, you have to use more to get the same results.

The PT said she had to discuss the dry needling with the specialist to see if it works on neurologically caused spasticity.

Thanks,
Kelly  

[rendean]

Kelly,
I take Klonopin for spascity twice a day. It works great. Baclofen gave me NO relief. Klonopin will make you sleepy at first but as your body adjusts it's fine. Beats a pump.

You have had so much going on in your personal life that it may be reflected in increased symptoms. The Klonopin can help you relax in general. I know this because I'm definitely a type A personality but things came down to a A- or a B+ with the Klonopin and my symptoms did improve.

I hope your new drug regimen works well for you.

Ren

[Lulu54]

This doctor sounds good - she is being agressive in your treatment and I always like that.  I am rx'd up to mg baclofen, but find I do pretty good on 40 - I'm taking it in the morning to get moving and then in the evening to carry me through sleeping.  It's an odd dosage, but works for me.  I ocassionally take another dose mid-day.  I'm with you in thinking I don't want to use it all now- what will I have in a few years?

You want to take enough that it is beneficial to relax the muscle tone but not so much that your muscles are so loose you can't walk.  

I had not heard of dry needling but a quick google turns up lots of information. It is similar to acupuncture, but still different.  I think I would go to an acupuncturist instead, because I know the acupuncturist has extensive trainig, whereas the people who do dry needling don't have much  in coursework.  

Ampyra dosing is the same for me - I take 1 dose in the morning and don't do a second one because of the insomnia side efffect.

here's hoping something works soon for you

L

[Sidesteps]

Kelly,

I am not sure if I want to ask but I am curious, how did they test your spasticity level?

In reading your post, as I'm a bit loopy from the Zanaflex I'm on, I think it's good she's trying to make you confortable. If it helps keep you moving then that's most important. :)

I'd be concerned about the next level myself but I'm working really hard at trying to stay in the present and deal with the future when it arrives. It's not easy though...

I hope the medication changes provide you with relief.