Discussions that mention zanaflex

Cerebral Palsy board


Hi!

I have been avidly reading this thread for a number of weeks now and I just wanted to say what a fantastic resource it has been for a number of reasons.

As a female on the verge of 30 with spasticity I readily identify with what you have been saying (esp. fatigue and hip issues!!). As yet, I have no CP diagnosis. I have had worsening gait problems for about 8 years now and being the type who normally soldiers on, a slight limp didn’t really bother me too much and certainly didn’t stop my from doing the same things as most of my peers. Since then I have been getting more hip pain after long periods of walking and gait has become stiffer, so I went to see an orthopaedic consultant over a year ago. As in my family history I mentioned a genetic neurological condition, the ortho referred me to the Neurology dept, as he wasn’t sure of the cause of my heightened muscle tone although I did mention that my reflexes had always been brisk and I have never had brilliant coordination . Over a year, 3 MRIs, umpteen blood tests, EP, EMG and LP later I am still in the dark!! Every time I attend the neuro clinic I mention that the tone and coordination issues have been with me since childhood, but they don’t seem to take any notice. While I realise that the source of the spasticity needs to be determined, and the genetic condition has now been ruled out I feel that in not looking further back at my med records they may be overlooking something important; I have sought to remedy this by requesting my GP search through my records for anything pertinent to this and send it on to the hospital so I can discuss it with them at my next appointment. If the spasticity has been there since childhood, a hip x-ray showed lumbar scoliosis and I have a pelvic obliquity and femoral anteversion (thigh bones turning inward, I think), surely such pathology is more indicative of CP? (all my tests have had negative results)

As you can imagine I’m getting a bit frustrated with the whole process, since my gait has worsened since my first visit and the only intervention I have had so far has been physio and Zanaflex (took it for 3 months, no real results and more fatigue!!). I find the physio hard due to motivational issues and the fact that trying to stretch muscles that don’t want to know is a thankless task, my gastrocs won’t react to anything but a passive non-weight bearing stretch a lot of the time anyway. I have aksed them to review my meds (would love to try botox) but they won’t until they know what the condition is. In the meantime I have seen a podiatrist (I would greatly recommend) which was really worthwhile for gait mechanics assessment; as yet I have no treatment there either as she would a couple of her colleagues to see me for some kind of consensus on the tone and potential drop foot issues, but at least I feel like someone’s hearing me!

All in all I would say that most of my frustration is coming from the fact that as time goes on the spasticity is becoming more and more restrictive and I’m getting no answers or treatment and am find I am struggling more and more with doing things and am becoming increasingly concerned about mobility and pain later on and how this will affect my working life. This thread has been really useful from the point of view that I am not alone with this at all, there are things that may work for me (fingers x-ed) and self-education is a valuable thing. Many thanks for the enlightenment!!
Prisc1125,

Whew, I am glad you aren't mad.
And let me tell you I was interested in that gait testing until you mentioned the needle in the calf muscle...........OUCH! Wow!

I think I mentioned this before but I am going to check on zanaflex (could have it spelled wrong) and see what kind of side effects it has. If I could get something to calm down my back and my leg things would be more than marvelous. For now I am very much liking the celebrex results. The pain to stand from sitting in a chair is almost gone completely.

I just can't believe our weather! We had warm temps but then we also had 60mph winds. We lost more shingles, so my husband will be back on the roof again when the weather gets nice. Now today the wind is still here and it is very cold!!! What I need is an all expenses paid trip to Hawaii! I've never been there but I hear it is beautiful. The closest I am going to get is a trip to Miami FL for a week on a work related issue and I will probably end up with major tight muscles because everyone in Florida has to have the air conditioning cranked to sub-zero temps! My feeling is if they want to live in cold temperatures why don't they live in Alaska, or better yet they can come to my house. I lived in FL for 2 years and hardly ever turned on the air. ( I am having weather related pain today does it show?) :D

Well as per the usual keep me posted on what is going on but I am taking a copy of your post about the FDL surgery and all that with me on my next botox adventure. (if that is okay with you of course) I will let him read what you wrote instead of me trying to explain it.

Okay then I have a munchkin next to me wanting to check out Kim Possible to play cool games as I am told. gotta run!

Take care,

Lastramy
Prisc1125,

How are you feeling today??? I was so worried about you and I tried my best today at the pain clinic but once again I don't why I bother.

First of all, the bumps on your leg are PROBABLY in response to all of your other calf issues. They sound like trigger points, bunched up muscle that is irritated. Not likely that a NSAID will be helpful as the bump is not actually an inflammation. Massaging the points may help but it may take a few sessions to see any real effects and the other option considered is dry needle injection therapy. If the calves are painful as in muscle pain then a muscle relaxant should be tried and zanaflex (sp?) would be the first line drug of choice because it has less sedative properties than others. Trying this drug only at night at first is the plan given. If the pains are sharp then there is possibly nerve pain there. I got off the track to find out why that would be starting so I am sorry for that. They suggested my drug nortriptyline which is very often given for sharp nerve pains. I take 30 mg and was told to up it to 40 mg. Your surgery problem is as I said before, there may be other muscles compensating in and irritated from lack of use etc. Couldn't get any more out of them really they are anestesiologists by trade and there to make pain disappear.

So for me...............the final result was this.............an epidural nerve block to the lower L5 area of spine with PT. Then I am to turn into a drug addict and up my nortriptyline to 40 mg, take 400 mg of celebrex instead of 200, and go on round the clock tylenol 650mg doses each. THE END!
Let us not talk about prevention for good leg. Let us not talk about origin of pain. Let us not talk about options that are less chemical in nature. Let us not talk about how I can get help with medical massages as they work very very well for me but are very expensive. Let us not talk about how to handle further botox injections. Let us not talk about if botox could be causing some of the painful areas.
Instead I get to go to more doctors and PT and pay out the nose and wait to see when I will be needing my liver transplant.
What are the warm sensations I get at my knee? I don't know.
Explain exactly what I have...spastic/tight/hypertonic muscles? I can't.

But now lets look at this.....we can give people transplants, we can reattach severed limbs, we can get spinal injuries back up and walking, we can clone body parts and animals but don't ask us about CP because we just don't know what to do for you. They always say the same thing.....we can't cure you! I say no kidding but could you get the pain to level off and stay consistent so I don't go out of my mind.

They wanted me to change massage therapists and possibly get a 20% discount on that (best they can do). All therapists are out of my way....I would make up the 20% in gas money to and from. And the closest ones to me are men and no offense to men therapists but some of my trigger spots are high up on the leg. Hands off dudes!

They are supposed to be full of ideas for alternative medicine so people aren't so dependent on drugs but I feel like I got just the opposite effect.
Maybe I am trying too hard. I just want to keep my good side from doing all the work and then problems start there and then my whole mechanism for control is gone.

So on the advice of my friends I am getting the epidural block on April 7th.
I sent my PT an email asking if I can see her again but who knows if she will answer my email or not. She is great when you have her in person and frustrating for trying to get in contact with. Oh I do feel a headache approacahing!

Help me here..........what do you think?
My quest for your answers is still not over. I am taking the same questions to the botox doc. I am very determined and I don't care if they are running late or whatever they will hear me. :o

Well I need to go because the more I type the more pain I get. Oh and once again lets ignore my arm! Nothing said about it at all.

Okay I need to get off for a while...................
I hope that wart is feeling better and I hope if not today then tomorrow something can be done to relieve your pain. I will be thinking about you!

Lastramy