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Discussion Starter · #1 ·
I am just so excited, they have FINALLY worked out what is happening with my feet. And this is a really and truely worked it out, as they have FINALLY done my nerve conduction studies.

It turns out that although my sensory motor neuropathy has worsened over the last three years, it is NOT causing the problem with my feet/legs twisting up.

When they tested my muscles there was WAY TO MUCH activity going on in the muscles going down in to my feet, which makes total sense of why they are so twisted, as every muscle is contracted like mad (clawed toes, club foot, rotation etc).

So, far from this being a problem due to my nerve damage (which is definitely alive and well and deteriorating according to expectations thank you very much) I actually also have a problem with spasticity. It is more marked on my left side - my left foot being particularly bad (no surprise me).

The other thing that happened is that I reall liked the neurologist who did the tests, and seeing I don't have a hospital based neuro any more, connecting with this guy was really good and I would be happy to see me again. He said that he remembered me from another time we met which I don't recall at all (must have been during a hospital admission). I love my current neuro and will continue to see her, but having a hospital based neuro who knows me could be really helpful too.

woohoo. I am vaguely thinking botox injections and wondering if they could help, as i know they use them for spasticity. Must ask my neuro about that.

Woohooo again, I am just so happy about this. Who knew that lupus could cause spasticity, I certainly didn't .....

cheers

raglet
 

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Wow Raglet what a turn up for the books! Who'd have thought it...

It's great that you finally got that nerve conduction study done and that you have a name to put to what's going on. Now I hope that there is actually smething that they can do about that. Is that too much to hope for?

Katharine
 

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Discussion Starter · #3 ·
well, it seems to me that it has got to be good, coz there are absolutely zero treatments for the other problems, and at least a few for this.

But, the neuro who was doing the test kept saying again and again about all the problems that he was discovering (some were actually rediscoveries) throughout the testing that 'this will be part of the problem'. So there is no one thing causing the problem, but rather the layered effect of the multiple problems I am having. I knew that anyway.

Still, i am very pleased, and I have been reading up about various treatments ever since. If I could even get my left leg to the point that it would stop fighting the the splint and just sit nicely in it that would really help. My left leg just wants to pop out of it, even with the extra straps, whereas my right leg is much more splint complient.

what a strange day

cheers

raglet
 

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Hi Dr.Raglet ( ah! ah!)

Hope your well. Glad to hear you now have answers and hopefully as you say treatment will help at least with your leg sitting nicely in the splint.

Maybe now things can start to slightly improve for you.

Keep us posted on how things progress.

Take Care on this Strange Day;)

Mrs M
 

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Raglet:

I am glad that they foud something that may be treatable, I guess like an onion, you will just have to peel the layeres and get to the heart of it all.

Much love - Stephanie
 

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Raglet,

Great news that you liked the Neuro. That is half the battle won right there.

Also, I hear the Botox injections work wonders. If you do it you will have to let us know.

I like Stephanies saying about the onion.......oh so true!!!

I have muscle spasms so bad but my Baclofen has become my best friend.

Do you take anything for muscle spasms? If not is that something you and your doctor will entertain the thought of?

Good luck and let us know how you get along.:wink2:
 

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That is great news. I am really happy that you are happy. It is great to have a nice doctor too and I hope that you can continue to follow with this doctor !

I hope that you can go over your treatment options soon and start to try some out !

Good luck and nice to hear some good news.
 

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Hi Raglet,

Glad to hear you found the root of your problem. Now, hopefully they can do something about it.

My neuro suggested Baclofen for the spasticity. So far I have declined since I am enjoying my new found legs. The spasticity helps me stay upright a little better than before. Bending the knees and moving the ankles are more of a problem though. In the meantime I do a lot of stretching to keep things moving.

Take care,
Lazylegs
 

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Discussion Starter · #9 ·
I will just be so happy if they can do something about my club feet. They are not promising anything, but even if they can get it to the point that my fighting my splints I will be very pleased.

I am really interested to hear about others with spasticity - do you have deformities from it ? My feet are totally bent out of shape, and when i sleep the on my side the top of my feet lie face down on the matress and my heel points up in the air. Even just getting them to relax for a minute would be a miracle. My hand is starting to roll up into a ball, which is likely to be the same thing at an earlier stage in the process. It feels just the same.

I will just be so happy if they can get my feet to stop fighting the splints. No wonder they have had to put extra staps on my AFO's to keep my feet in them.

Now I just have to wait for my neuro to get the results and then we will take it from there. That will take a while - then it will take a couple of months to get an appointment with her, so I am not expecting anything to happen very fast.

cheers

Raglet
 

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Discussion Starter · #10 ·
for anyone wanting to read about spasticity, this was a really interesting article.

It mentions equinovarus deformity, which is what doctors have been telling me I have for years (basically club foot).

It's also got a bit about hands rolling up into fists. I also have what is known as a cortical fist as my hand rolls up the wrong way (again, who knew)

http://www.emedicine.com/neuro/TOPIC706.HTM

got lots of stuff about treatment etc - I am just so excited, I am just SO used to having stuff wrong with me that there is not treatment for beyond rituxan etc which just doesn't stop this stuff deteriorating.

thanks to everyone for replying, it is lovely to have a team cheering me on

raglet
 

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Raglet,

Great article and thanks so much for sharing.

I have deformities in my toes.

I can not say my hands are deformed but they clench to fists and it takes time to get them straightened out.....but they are not deformed.

Hopefully the doctors will get those club piggies fixed up and you will be a new woman. Good luck with that.:wink2:
 

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Great news Raglet.:)

I hope you can start treatment soon and you see great results.

It is so nice to see you happy.

Take care,
Lyn
 

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From a mom who has a 13 year old with spastic quad cerebral palsy, excuse me for not being excited you have spasticity. Botox can also have variable results and you can become immune to it. Another thing to consider is if the spasticity is actually dystonia. Dystonia is a whole other animal. One of the best sites I know that deals with movement disorders is We Move
http://www.wemove.org/
Joanne who is hoping her son has some good days ahead as he has just been diagnosied as having FSH muscular dystrophy. Hoping the muscle weakness will balance out the spasticity.
 

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Discussion Starter · #14 ·
hi Joanne

I do know that spasticity can be severe, and there are many who suffer terribly with it. I am very lucky that my problems are limited, and obviously less severe than your son's. I think I am celebrating that I know what it is, rather than celebrating spasticity itself, if you know what I mean.

Who know, things may not improve for me, but it was nice to start figuring out what is really going on with my foot.

oh, I just noticed that you said your son has been dx with muscular dystrophy - it's not something I know a lot about, but I do know that some forms can be pretty nasty. Sending lots of loving thoughts to you and your family.

hugs

raglet
 

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Hi Raglet,

No deformities so far thank goodness. It affects my arms and legs on both sides of my body. It is a constant battle with the right side, everything pulls to the right. I have to do counter stretches just to keep things headed in the right direction.

I understand about just knowing what it is. Now that I know some of my back problems are from the spasticity I can do something to lessen the problem.


Hi Jo,

The We Move site is great. It really helped me when I first found out I had spasticity.

Take care,
Lazylegs
 

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Gee, Raglet, you must stop sitting on your feelings like that. How do you *really* feel about it all?:lol:
Seriously, I am very happy for you. Autoimmune diseases do lead to strange sources of happiness.
All the best.
Douglas+
 
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