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Discussion Starter · #1 ·
Hi everyone,

Saw my GP yesterday and he has referred me back to see the Neuro. I have escaped :lol: doing this for just over a year now but I guess that was too good to be true!

My dystonia is way worse lately and doesnt seem to want to settle like it usually does and I have a really bad intention tremor so it's back to the drawing board.

I am pleased to say though that my anti-seizure med has helped my pain immensely, so I am hoping all this flaring up has nothing to do with an increase in that :rolleyes: I have had all this before starting the anti-seizure med so I doubt it.

I go see him in a little over two weeks. I'm gonna hide from my lupie doc in the waiting room though :lol: because he thinks I'm going great and I WAS!

love
Lily
 

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Hi Lily,

I am sorry to hear that your dystonia is acting up again. I hope this flare up eases off really soon.

I was really happy to hear that your pain levels are way down Lily! That is super!

I hope your good Dr.s can help you get your vasculitis and dystonia under control, and that you feel better very soon!

Love,
Sandy
 

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just want to wish you well at your doctors appt.

and i hope everything settles down for you really soon.

take care lily
 

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Lily,:hug:
I am glad that your pain is under control, but too bad you have to see you neuro. He will have you in good shape in no time:)
Hopefully, once that settles your lupus will too. Hope you don't have to visit your rheumy.
Take good care of yourself:love:



Hugs,
Becca
 

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(((Lily))))

Sending you big soft gentle hugs.:hug::hug:
I am happy that your pain is under control.
I hope that with your visit with your neuro gets you back to doing good again.:)

Take care.
Love,
Lyn
 

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Hi Lily,

Good luck with your neuro appointment. I hope there is something that can be done to help you.

If the doctor has any suggestions to help an intention tremor I would love to know. Mine is getting worse all the time. On my last visit my neuro teased that I needed velcro on my nose to stop my hand as it goes sailing by.

Take care,
Lazylegs
 

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Hi Lily :wavesmile:

I sure hope the neuro can help to get the dystonia settled down again for you and also this new intention tremor.

Its good to hear that the anti-seizure meds have done wonders for your pain, its a comfort to hear when someone is getting pain relief because living with pain day in-day out is no joy whats so ever (not that i have to tell you that!!!!)

I hope everything else is keeping its ugly head at bay for you.

Hope to catch up with you real soon.

Take good care of yourself - love & hugs :hug: Jo :hug:
 

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Dear Lily

Oh gosh i am so sorry to hear it is acting up again.I do not blame you for wanting to hide from your rhuemo but you know we do have to take care of oursleves to keep things from getting worse if that is possbile.You have been through way to much young lady.I sure hope things start to settle down some for you and real soon to ((((hugs))).Let us know how you are doing.

Tammy
 

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Hi Lily,

Sorry to hear that your docotr thinks you need to see the neuro again honey........I try to keep away from neuro as well but sometimes it really becomes necessary.

With your dystonia becoming worse it might be that perhaps a muscle relaxing medication might help. Whereabouts are you getting the spasms?

I am really pleased for you that the anti-seizure med has worked in helping any pain you might get. I hope that it all settles down again for you very soon.

Good luck with the neuro appointment xxxx hazel
 

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Lily I am sorry to hear the dystonia and tremor are worsening. I hope the neuro can come up with some med magic.

Many hugs
Clare
 

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(((( Lily))))

you are funny about hiding from your doc......although you sound like me -

I am glad that you are going to the neuro as it has been some time, and it can never hurt for them to check things out again and help get it under control.

I am glad your pain is better though, that is a good thing.

Wishing you luck at your appointment.
 

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(((((((Lily)))))))

Im sorry to hear you are being referred back to the Neuro. Those tremors sound very uncomfortable:sad: I always think the neuro referrals are the most difficult ones. Its just so darn hard to find out whats wrong and treat these things. I hope you have a whizzer for a neuro? Do you get on with him alright?

The very best of luck at your consultation. I will be really hoping that it will all be for nothing as your tremors settle down over the next fortnight... well - you never know...

Best of luck
Joan:rose:
 

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Lily,

I am sorry that you are flaring so much especially with they Dystonia acting up. I am glad you are getting in so quickly and hope he can figure it out quickly this time. It can be so frustrating waiting for doctors to decide what is causing things and what can be done to treat it.

In the meantime take 3 chocolate bars and call me in the morning. :give_rose: Now more seriously, rest as much as you are able. The little things can wait.

luv,
Karen
 

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Discussion Starter · #15 ·
Thanks all, I am wondering if he will try the botox injections in my neck this time, that sure would be good if it works for me, nervous as I am about having a 'new' treatment. They have had good success with them though I've heard.

Hazel the neck and my torso are currently affected :rolleyes: along with the intention tremor in my hand there's not much of me staying still, that in itself is pretty exhausting. I guess there is a lot of pain in my neck and shoulders from the constant twisting and abnormal posture but I guess we get used to so much it's hard to even rate things sometimes.

I take a muscle relaxant at night but it's only a mild one, so maybe there's room for improvement there too. I will see what he says as far as drug interactions, I know that needs to be looked at with all the stuff I'm on.

:hug: to all who are doing it tough right now.

love
Lily
 

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(((((((Lily)))))))

I am so sorry you are going through so much,it must be very upsetting & scary for you.

I just want to wish you lot's of luck with your appointment :luck: & I hope your neuro has some solutions for you.

sending you lot's of healing hugs :hug:
I hope you're getting plenty of TLC..take good care
thinking of you..karen x :love2:
 

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Lily seding big big (((((((((((((((((HUGS)))))))))))))))
and hoping that neuro can help sweeite...


take care possum
Lin xxxx:hehe: :)
 
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