Neurological physiotharpy & MRI results

[twist330]

Well as many of you will know I had an appointment to see Neurological physio, which i went to last Wednesday.

She ask many questions about how I ended up in this situation. She then asked what I thought she may be able to help with. I started with the cramp like pain I get across the top of my right foot,and the fact I thought it was possibly due to my toe curling under when I walk, to try and resolve the pain I walk with my foot turned out. I also pointed out at the same time on the the other foot 2 toes that have parted, and my co orindation is shot to peices, She examined my feet, we talked about  reflexes and how the neuro had discribed them as brisk but the neuro rehablitation Dr thought they were normal (in my notes) this was possibly because he didn't do them!

So she does the thing on the bottom of my foot and my toes shoot upwards. She now saying there is no doubt  this is a problem with the central nervous system. She lays me on the bed moves me about in different ways. Now  I am very loose limbed (Ex dancer now teacher) as I have continued to do as much of the teacing I have actually done my self a favour in keeping mobile, I am much stiffer than I use to be but when it comes to "normal range" I am well within them. She aknowledges this but is convinced it is a CNS problem.

We spoke about the fact we are waiting for MRI results. She offers to look them up. Guess what?

There is no change from March 2010. one solitary hyperintense foci in the white matter believed to be within normal range.

So the pyshio concludes with the fact that as I am very flexible in my limbs there is not alot she can offer she will write back the the neuro and the neuro rehab team and explain her finding.

It wasn't until we left I realised that I still had no suggestions of what could help my foot or co ordination.

I can hide the pain I can't hide the silly walk or the fact I look drunk. I get the feel i get pushed in all directions cause no one knows what to do I just get thrown back.

sorry needed to rant
twist

[twist330]

Don't worry about it I can see you've got alot on your plate at the moment.
Best wishes
Twist

[addicted2harleys]

Will do!

[twist330]

If you don't mind asking about the dose I would be very interested.

Many thanks

Twist

[addicted2harleys]

I am wondering about the Lyrica dose, too.  I am on 600mg a day also.  I, too, was on Gabapentin before but my highest dose for that was 4800 mg a day.  

I have an appointment with my pain doc on Monday or Tuesday so I can ask him then.  Want me to tell you what I learn?

I can truly relate to the loss of mobility.  I am sorry you are experiencing this as well.

Hugs,
Addi

[twist330]

The consultant seems to think the highest dose of pregabilin for nerve pain is 600mg a day.

I know I was on gabapentin at 1800mg before I switched over.

I want to find out what is wrong, but feel unable to help myself, not real sure what to do now.

Thanks for your response, and wondered if you knew more about pregabalin dose?

[Sparkysarah]

Hi Twist

I really sense the loss of your mobility as a dancer and a teacher and just how very tough this must be for you, particularly if you are having a bad day. It feels like you are just hitting a brick wall at the moment and no further help has been offered or suggested and you are just having to get on with it as best you can.  

You are not on a high dose of Pregabalin, so this may be worth considering increasing as you have indicated but I am guessing this is just treating the symptoms rather than feeling that there is anything you can physically do to help yourself. I think this is one of the hard lessons that we learn for ourselves that there may not be anything that a doctor or physio can do to change the way our bodies are manifesting themselves with different symptoms so I can understand you are feeling very fed up.

Hope your appt. at the end of the month goes Ok and keep dancing..I bet you are amazing and I am in awe of you as I think I have two left feet as the saying goes where dancing and co-ordination are concerned.

love Sarah x

[twist330]

HI,
One of the consultants I've seen ( not the neurologist) has put me on Pregabalin 200mg twice a day and Amitriptline 50mg at night they have helped as the dose has been steaily increased but now I've been on the same dose for about 4 months I seem to be back to square one.

I have an appointment with this guy at the end of march I think he will increase the dose of Pregabalin to 600mg as we have already talked about it.

Talking about things we could do that are "super Human" 18 months ago I could turn a trip pirroutte and jump higher than any of the pupils I teach. Well now I can't tendu (point toe at front on the floor ) with out holding on to something to keep my balance and then when I stop, the mucles in my calf dont release.

Thanks for your reply
Twist

[Cre8_it]

No need to apologize for the rant that's what makes this forum so good, we can vent to those who understand.

I'm not quite sure what to do with the, within normal limits stuff.  I believe that a person can be within normal range of motion, strength etc., but this can be way less than what they were capable of before.  So for instance, I used to be able to lift weights that a person twice my size couldn't.  No one could believe that I could do the things that I could do, I could stay up on a chin up bar forever, do push-ups forever...you get the idea.  Anyway, I go to a neuro, saying that I'm so weak and my limbs fatigue easy, and of coarse I'm within normal limits.  All I could think to myself is...normal for a generally weak person maybe!LOL

At least she recognized a problem in your cns...that's a good thing.  You may have to deal with dr.'s theories for a while because they don't know what to do.  In the meantime talk with your dr about medications that might help.  I wasn't diagnosed when my dr put me on meds for nerve pain etc.  Oohhh yes, the drunk walk is the best! LOL  I can't tell you how many funny looks I've gotten at the mall!  People think that you're drunk at 1 in the afternoon!

I hope you get some relief, it might help your walking some,  maybe low dose amytriptline and/or gabapentin.  Just a thought.  Are you currently on any meds?