Help Needed!

[Dddark1]

Hi all, I have had blepharospasm for the last 7 years only really looking like a possible diagnosis by a neuromuscular specialist but waiting for me to be seen by Opthamalogy next month. Looking you this condition I see it belongs to a group called Dystonia. My concerns is that my other symptoms are being ignored. ...which is right sided heaviness, leg drag after walking for a short while caused by lower right side back pain, tighten up of upper arm neck, face muscles. I experience foot and left side trunk cramps, headaches, swelling especially ankles and joint pain and I've had an MRI on my leg muscles had lots of blood tests taken ...the list is endless.

I'm not due to see the specialists again until Dec.

What can I do. Your input will be appreciated

[Barbara124]

I too have leg cramps and numbness, swelling ankles and headaches and I hold a lot of my body very stiffly. I don’tknow If this is dystonia and i’m Due anm mri scan tomorrow because. My gp thinks I’ve had a minor stroke but i’m Positive I haven’t. Barrbara

[Dddark1 in reply to Barbara124]

Hi Barbara, I got myself referred via GP to a neuromuscular muscular specialist. I've had an MRI of my muscles and due to see Opthamalogy next month however i won't get any of my results until DECEMBER. I'm now being woken up during the night time by various muscles spasms. I have to convince my GP to refer me on to a movement specialist who has Agreed to see me but I know the GP will be difficult.

Let me know how you get on. Take care

[MylittleBrody]

Hi Dddark1,

I was diagnosed with blepharospasm, meige syndrom and dystonia earlier this year after nearly 2 years of symptoms. I have seen a neurologist a few months ago who gave me 3 options, leave the condition and it will get steadily worse, botox injections (which the side effects scare me a bit), or an operation which is the only cure.

I am having an MRI scan 20th September and seeing the neurologist on the 28th to discuss other symptoms which started a few weeks ago. I didn't really notice these symptoms at first but over a few days i realised it was happening every day. I would get a twitch in my arms, legs and back which moved to a different area within seconds, but only while i was sitting or lying in bed.

I have done a bit of research into this and came to the conclusion that it might be Benign fasciculation syndrom. I spoke to my doctor about this and he advised I speak to my neurologist about it.