Hi All

The PDS as usual have a helpful leaflet on this, hidden under 'M' for muscle (thanks QT for pointing it out):-

http://www.parkinsons.org.uk/pdf/FS43_0308_web2.pdf

Well worth a read if you haven't done so.

SlackAlice

Having now read the PDS leaflet, what it describes as 'off' dystonia seems a perfect match to your condition, assuming you are on levadopa. How did you get on at the GP's today?

Julie

It rather sounds like dystonia but I'm no expert, actually a beginner to this condition. Have you sought medical opinion? I feel you should as you don't want to cause unnecessary damage to your ankle.

Rayder

We wait with bated breath the answer to Sejvej's question....

Best wishes,
Grey

Hi Grey,
Haven't posted for a while logged on tonight for a nosey around and found your post. Have been on Madopar since May, gave Ropinerole a fair go -6 months- terrible side effects, but Madopar has been great. Just lately though been having probs with what I can only assume having read this thread is dystonia, my left hand and arm tight, hand almost clawing at times,left leg and foot tight and twitchy, can't seem to 'relax down on the left side' seems to start a couple of hours after meds lasts couple of hours then wears off. I'm fine first thing when I wake up before I take anything and am beginning to think its the meds causing it. Am tempted to stop taking meds altogether but am afraid other symptoms will re-appear. Starting to wonder (again)if they've got it wrong, maybe there's nothing wrong with me perhaps it's just stress and now I'm just being overdosed with dopamine. Think I'm going crazy is it all just in my mind?
Hope someone can offer some advice

Regards Dolly

Hi Julie
I would reiterate what Grey said about seeking medical advice. I know from personal experience that an awkward gait caused by dystonia can have far reaching consequences. Having walked on the side of my foot like you since Christmas time I developed severe hip and groin pain. I have now discovered that I have two pelvic fractures. Although I probably have an underlying bone insufficiency
the fractures probably would not have occurred if I had been walking in a normal fashion! Please seek medical advice.

Sejvej

Hello grey
Thank you for the link to the PDS information sheet on Muscle Cramps and Dystonias - it made interesting reading and I wish I had known about it sooner.
I take Quinine at night, dispersible Madopar on waking plus a Stalevo and Mirapexin, so meds-wise I seem to be taking the right things.
In the leaflet it suggested taking a controlled-release levodopa preparation which releases the drug over a 4-6 hour period at night.
As a result of my trip to the GP yesterday, I shall start taking a low dose of Amytriptylene at night (normally used as an anti-depressant but for low dosage it is used to help sleep). So I'll try this for a while.
My GP is going to refer me to a podiatrist - not sure about that, but I'll wait and see. I feel like that could be a waste of time. Overall, my GP wasn't really sure how to tackle the problems of my feet/legs as there seems to be a lot of symptoms interacting with each other. She did stress that I should be elevating my legs for about 3 hours a day and wearing compression stockings. Aaagh!
SlackAlice

(Just read the dystonia leaflet which scared me rigid but still...)

My main symptom initially, and the one which disables me and prevents me going out much, is dystonia in my foot. It comes on after i have been walking about 50 yards. Once it has set in its hard to get rid of and i cant walk anywhere and am in pain. Without hubby to stagger against i'd be lost. It tends to go if i sit down and, unless i am very lucky, starts up again as soon as i commence walking.

I can tell when it's about to happen and if i sit down before it happens I can sometimes divert it and then carry on walking for awhile. If hubby briefly massages my toes it often relaxes but me doing it has little effect. Full marks to hubby because he must find this public display of foot embarrassing.
I also find wearing a gel toe support helps a bit.

PD nurse (for the short time i had one ) thought it was PD related. As I wasn't on any medication this is likely true. The consultant said that the treatment would be the same as for PD and I wasn't ready to take meds at that time. I haven't really mentioned it since....

Now other symptoms contribute to me finding walking difficult which is why i am trying medication (Requip tried and given up and awaiting appointment with consultant-as some of u might have read elsewhere!). Actually on reflection despite low dose, I think Requip (ropinirole) did help....

Anyway once i go on next meds i will monitor it. I have been stuck not going out by myself for too long.

Hi Grey and Sejvej

Thank you very much for your advise. I am seeing my PD nurse on 26 September anyway so I will mention it then to her. Hopefully she will be able to help.

Thanks again

Julie

I sometimes have cramp problems in the early morning, when my medication level is low. (I take Sinemet CR - Controlled Release levodopa + carbidopa - but there's a limit to the amount I'm allowed to take.)

I find that doing the stretch exercises that athletes do, earlier in the day, and especially when my medication is 'on', is very helpful.

Hi,

Thanks everyone for their tips in dealing with this problem. I was away hill walking again last weekend without any major dystonia. That despite the tough underfoot conditions caused by this glorious summer!

I do notice a permanent change to my foot, the big toe being raised, the toe next to it lowered. This can cause the toes to ache a little when forced into a normal position by footwear. Also there is a tendency to catch the second toe when walking barefoot.

Since the first attack of dystonia, there is a constant feeling as if the top of the foot (above the arch) is under pressure.

Warmup exercises after rising from bed strike me as a good idea, probably do them whilst preforming the daily fight to button up my shirt and tie my tie.

Grey.

Hi Grey,

Glad you read the information sheet I mentioned a lot of the information sheets supply some valuable information and support.

You mention your foot is starting to look deformed, I have a similar problem to what you're describing causing my toe nails to grow upwards and out. I know wear an innersole in my shoe which is designed to stop the toes clawing - made a world of difference. My GP referred me to orthotics who made the innersole for me, unfortunately it did take some weeks but well worth the wait.

I find stretching exercises really do help and lengthen the muscles which become shortened due to lack of full use caused by Parkinson's. Failing that there is always botox injections but these are the last resort.

QT

QT

Botox is the penultimate resort, fusing the bones the last resort. (Amputation, the resort of choice during a bout, but we won't go there....)

G.