Does anyone else with MSA , PSP or CBD have ankle clonus as a symptom of their illness ? Thanks folks :)

[CheekyChops1973]

[Heady]

Hi, sorry, never heard of Ankle Clonus! So I guess not.

Lots of love

Heady

[CheekyChops1973 in reply to Heady]

Hi Heady

The reason I ask this question is because the neurologist said this thing in my ankle and leg pointed towards the parkinsons plus diagnosis and think he see's it as an atypical parkinsonian feature !!!! Just trying to understand whats going on really . On reading up on the subject it says it is more common in ms and als but it also says it can be a sign of neurological disorder . I don't have the pill rolling tremor that people with pd have but have a resting tremor and cogwheel rigidity at the wrist with bradykinesia and am losing power out of my right arm and hand . Things like washing under my armpits and brushing my teeth are difficult as is typing with my right hand . Thanks for your reply . All the best

[suziewong]

What is ankle clonus?

[CheekyChops1973]

Hi Suziewong,

Clonus is a constant ryhtmic contraction and relaxtion of a group of muscles and I have it in the ankle . It is iniated by the neurologist by pushing the foot upwards towards the body and then it sends my whole right leg into a crazy tremor . There is also quite a bit of pain with it actually in the ankle and at the heel of my foot . My leg tremors and my foot kind of waves from side to side uncontrollably at times . Havent heard of anyone on here with MSA PSP or CBD who have it as part of the illness . Best wishes to you

[Cosmos123]

Hi Cheekychops

My wife iniatally diagnosed with

Parkinson's Disease some four years ago, recently had her diagnosis changed to CBD around twelve months ago. Among the many telltale symptoms, alien limb, aggressive symptoms down one side of the body and parkinson medication not really helping with my wife's symptoms.

You refer to Ankle Clonus, my wife is affected mostly down the right hand side of her body, although to some extent it seems to be starting to affect her left side now. Her right ankle behaves in exactly the way you describe almost having a mind of its own, very painful at times when walking and at rest. She has been referred to orthotics and is having a splint made to correct the ankle from pulling inwards when walking, as well as trying to realign her ankle while at rest.

I'm sure this initially will cause discomfort to my wife, but it's been suggested that given time and the muscle/tendons has been stretched the discomfort will lesson.

They say if it's not addressed now the ankle will permanently adopt a position pulling into the left.

Regards

[CheekyChops1973]

Hi Cosmos 123,

Thanks so much for your reply. Yes my symptoms are down my right side , although have had painful muscle contraction down left side a couple of times . I take diazepam to stop those pains coming to such an intensity though . Before the diazepam one of those pains was making me wretch it was that painful. Don't know if your wife has these but diazepam seems to be helping at the moment . I would suggest this to her if shes having these pains and doesn't know what to do about it. Of course they also help with anxiety which you're probably aware makes everything worse . Like a viscious circle for me .

As I'm typing this message my foot is waving from side to side and up and down depending on whether I have my legs crossed or my foot on the ground . When I walk my big toe seems to separate from my other toes on each step and its though I'm inclined to only walk on part of my foot which obviously can result in being unsteady on it at times and there is a constant stiffness /spasm from my ankle up to my knee .

I think parkinsons meds helps a bit but not in a major way and doesn't really help my mood or anything !! May I ask what meds your wife is taking? I was put on Sinemet Plus 125mg to start with and am now on stalevo 100 three times a day with a half sinemet 125mg at night along with baclofen and clonazepam to help me sleep !!

Without these nightime meds I don't think I'd be able to sleep as the pain in my ankle and spasms/stiffness would keep me awake as cant get comfy!!!

I think the answer I'm looking for is to be able to stop throwing these drugs down me and look at getting some sort of leg or ankle support to stop the discomfort a little and to stop me feeling like a zombie .

After my last physio appointment she said she would get together with a neurology nurse practitioner on my next appointment and see what can be done . My whole leg is tremoring now right up to the thigh !!!

I thank you again for your response and hope that your wife receives some relief from her discomfort when that splint is made for her . I really feel as though if you don't ask you don't get in this country which is why advice like yours is so important to me !!! If theres anything that can help its all worth a try isn't it . Also , with something as rare as this CBD its hard to know what to do at times isn't it ?

All the best

[Pippin123]

Hi cheekychops

I am Cosmos 123s wife. I was diagnosed with cbd in November 2012. I was initially diagnosed with Parkinsons in 2010 when I was still working as a nursery officer. I enjoyed my job, but I decided to ask for early retirement , which was granted and i retired in March 2011 . I will be 59 this month and still feel young at heart (even though the body feels a bit older). I was initally on Azilect, Sinemet, Rivastigmine, citalopram, domperidone, , but now have changed to stalevo, citalopram, and rivastigmine,and baclofen. I agree that the sinemet and stalevo have little, if any effect.

but the baclofen does seem to help the spasms especially in my right hand. I too wondered what was the point in taking so many medications if they were not helping me and with the help from Paddy my Parkinsons nurse I have recently stopped taking domperidone, and azilect. I am now hoping to stop the stalevo too..

I am very lucky in that I have a wonderful family and friends who support me fully and keep me busy. I try to stay positive and enjoy each day as it comes, after all no one knows whats around the corner.

My symptoms were down the right side only, but is begining to affect my left foot now. I have been very lucky with my

.medical support too. I have seen a specialist Parkinsons neurologist for a second opinion, and had a dat scan, also been referred to Parkinsons nurse, speech therapy, physiotherapy, and next week I will be having a swallowing x ray,

and getting a splint to support my foot and get it into a better position. However, like yourself I felt like I had come against a brick wall when trying to find information. I decided I would finally contact Paddy, my -parkinsons nurse. She visited me at home within a few days and came armed with lots of information. She ended up staying 2 hours and was brilliant - answering questions truthfully, and also encouraged us to talk about difficult things.

Someone on one of the internet sites also recommended a book called 'Finding meaning with Charles' by Janet Edmonson, It is quite a difficult book to read as It is about Janet caring for her husband who had cbd up to the end of his life. but you might like to look at some point. I found it an amazing story.

. .

[CheekyChops1973 in reply to Pippin123]

Hi Pippin 123,

Thanks for your reply . So important to be in touch with someone who knows how you feel !!. I am lucky too with friends and family around who keep me busy but I sometimes feel guilty because I have a hard time keeping a brave face even with people that I love very dearly . I feel that I'm in a vicious circle of anxiety which I'm sure you know can make you feel a lot worse and sometimes I cant stop it even when people around me are so strong. My mum being one of them who has just had a tumour removed from her lung and is still as strong (mentally) as anyone could possibly be . She has suffered with cancer of the mouth three times too and caught the superbug clostridium difficile while in hospital for a gangrenous appendix , all within the last ten years !!!

I just want to be a lot more like her . She's always smiling and always loving and welcoming and I try so hard to be strong for her .

I gave up work (Restaurant Manager) last March 2013 as things were hinting to this diagnosis and of course was not feeling well . I can remember little signs of things happening two or more years back . I had a constantly sore throat which I can feel as I'm typing this . Do you have this problem? and I was getting quite severe muscle cramps down my right shoulder and arm which was like pain I'd never felt before I(I also wondered if you experience these pains sometimes?). I was with my sister one Saturday night and we realised somehow that I couldn't move my righthand fingers like as they say 'air piano' .

At first the tremor at my wrist was very minimal and the neurologist who diagnosed me found that I had cogwheel rigidity from doing that manoeuvre with your hand where they rotate it . Tremor has got worse now especially when anxious and moves from side to side at the wrist .At my first consultation I only had a tremor in my foot when I moved it upwards but now my right leg is tremoring at the moment with pain in the ankle and heel of my foot shooting up my calve muscle to the back of my knee, but it appears that the whole leg is going for it at times . Think I'm having spasms or spasticity or cramping in my right calve as well . With my leg crossed my right foot almost waves from side to side at quite a fast rate !! Again I hope you don't mind me asking if this happens to you .? It can be so uncomfortable!!

Things worsen when I use my right hand for anything like shaving when my right foot tremors (toes and all )so tend to use left hand automatically now and I have little power in the right hand for brushing my teeth (thank heaven for the electric toothbrush !)Even washing under my armpit is difficult !!!

I too have a specialist neurology nurse practioner who is my first port of call with any issues I may have and she is lovely . Also have a lovely physio who got me to do a daily exercise routine twice a day . They are getting together on my next appointment 19th May to discuss any further help they can provide . I almost feel as you do I think as if my ankle wants to pull inwards whilst walking or resting . Physio made me walk across the room last week and think she could see that as I walk my right leg is stiff and my big toe seperates from my little toes on each stride with the little toes curling under . I almost feel as I am trying to walk on the right hand side of my foot only .

I have also seen an Occupational Therapist who has given me a bathboard which I find helpful and I have a rail on the side of my bed to help if my back is stiff in the morning .

One thing I'm grateful for is that I can still get around and take my dog for a long walk . I'm quite sure as much exercise as possible is important in this condition . I'm babbling on a bit here but thanks for reading this . I really appreciate your reply and would be interested to hear from you again . I am forty now but was diagnosed at thirty nine after the positive datscan .

All the best

[Pippin123 in reply to CheekyChops1973]

Hi cheekychops, it must so difficult for you to accept the diagnosis as you are so young.....It was bad Enough for me. It seems I get constant reminders of my illness even when I try not to let it get to me, this week I'had appointments for fluoroscopy. For swallowing (which I have no problems) and with orthotics for a. Splint to try to re align my foot. I must say it's uncomfortable and bulky, my neurologist phoned and gave me an appointment for Saturday so I think I need a break to get on with my life for now. It's not that I'm ungrateful but I just don't want it taking over my life yet. Something else new to me was that I had a fall.I was actually at a wedding so I had quite an audience and I didn't know whether to laugh or cry.....I chose the laugh as I must have a weird sense of humour.

Your mum sounds like a very brave lady and it's so good you can be there for each other, Is also natural that you feel down And anxious at times...I'm sure we all do. I take 30mg of citalopram. Which helps me....even so I had afew down days last week. I think this is a natural response to having such an uncertain future mapped out for you. pleasure free to contact me if I can help at alll x

[CheekyChops1973]

Hi Pippin123,

Thanks so much for your reply especially when you're feeling that you just don't want this thing to start taking over your life . I understand if you don't want to keep digging it all up again to reply to me !!! I am finding every day difficult to get through at the moment for the very reason you brought up about the uncertainty of what is going to happen next. But it does me a lot of good to speak to someone who knows what I'm trying to cope with .

Sorry to hear you had a fall !!! Especially in front of loads of people but you sound as though you came through that with a very brave face and just laughed it off. I had a little accident while walking the dog a month or so ago. I was climbing over a low chain fence and my right leg didn't clear the fence as I stepped over and I nearly went flat on my face ! Hands saved me thankfully !!!!and I didn't hurt myself . Had a look around but nobody was looking - don't think I would have coped as well as you if I'd been in a crowd. Fell flat on my face around Christmas time but I put that down to having too many glasses of baileys (got a bit carried away).

Had a bad day yesterday . Just one of those days when my mood wouldn't lift and couldn't get comfortable for most of it with the twisting and spasming down my right leg . Think I might get about one and a half hours relief from the stalevo but it all returns so quickly and can always feel it anyway.

I take 20mg citalopram but that doesn't seem to work much either .

Feel like I'm throwing medication down all the time with little result !! Neurology nurse said take paracetamol for the pain . Don't think that works either !!!!

Wondered if you have tremors at all . Got quite a bad one at my right wrist and of course the foot which sometimes tremors up and down and left and right quite violently like I have no control over it . I also seem to be trying to walk on the right edge of my foot all the time as toes claw under with the big toe sticking out from the rest. Don't know if all the pain in my calve is coming from my ankle or foot or its where I'm having a constant muscle spasm just about my knee . Seeing a nurse tomorrow but neurology nurse practioner is not going to be there as she has been called away to a meeting .

I also wondered if I could ask about your ankle symptoms and whether they are similar to my mine so that I could ask if there is anything anyone can do to straighten my foot which feels as though it wants to turn inwards like yours and is very painful most of the time . !!!

I seem to be very irritable a lot of the time as well and worry about my poor partner who has to put up with constant moaning !!!!!

Did you mean in your message that you wanted to have the splint taken off as it was too uncomfortable and bulky ?

Thanks again for taking the time to reply to me I so appreciate it . Every best wish to you and your husband and of course if I can help you in any way I am always on this site .

PS . Also wondered if you get pain in your Achilles tendon !!!!Thanks again

[Pippin123]

Hi again cheeky chops

I am sorry if I gave you the impression that I didn't want to speak to you, I was actually referring to medical professionals. I know I am so lucky to have such wonderful help and support and I am truly thankful for this, but I guess I'm still doubting the diagnosis so I feel I need some time to just be me.

It is no wonder you feel down if you are constantly in pain. I used to have pain with the spasms all over my foot and in the achilles tendon and calf,(my doctor said that my achiles tendon had thickened) but I find this has been helped by baclofen. My foot still moves about and points downwards and inwards but the pain is better. My neurologist has just increased it to 3 x 10mg tablets a day. However I feel that I am begining to have a few symptoms in my left foot - as you describe - the foot pulling in, movement, and big toe sticking out. I gues its just a case of playing around with meds. Like yourself I dont want to be taking unnecessay tablets if they are not doing any good.

As for my splint - I can understand why it has to be so uncomfortable , because it is holding my foot in what has become an unnatural position. It is quite easily removed as it fastens with velcro straps, but it comes up to a couple of inches below the back of my knee and I can just manage to get it on with a trainer. The orthotic guy said I should wear it at least 6 hours a day - and preferrably all day. I am trying to persevere but it hurts so much after 3 to 4 hours

and its a relief to get it off. I will not give up easily and will do the best I can with it

I do only have slight tremors now - sometimes on the head, and right hand, but I never really had bad tremors My foot/ankle/toes do still move around quite a lot. My right knee also points inwards. I didn't realise until I saw the physiotherapist that my whole posture was affected by the movement in my leg,. She gave me activities to assess me and it war strange that when I passed her a cup - my right leg pulled in, this also showed in my shoulder and she gave me exercises to strengthen the core muscles and try to re align my pelvis and shoulders to aid stability.

I also like to hear from people who understand , and it helps to read and chat on here. Please do keep in touch if I can be of any help or support. xx.

[CheekyChops1973]

Hi Pippin ,

Just a note to reply to your message . Thanks again for responding to all my queries. I've been having quite a bad week where my mood wont lift . I saw a neurology nurse on Monday together with my physiotherapist who has recommended a splint , support or brace for my ankle . Next time I see her she said she will have some things for me to try . That will be on 2nd June . Then on the third I have someone visiting my home to assess whether or not I'm entitled to the personal independence payment . Not looking forward to that much !!!

I'm more concerned about my mood at the moment . I only seem to be having a few times where I feel quite positive about everything and then most of the time I can barely squeeze a smile out . Again I try to be strong for my family who are very supportive but I feel every time I start to forget this thing it comes back with a vengeance .

During the appointment at the beginning of the week the physio assessed what was going on with my leg and foot etc and my right foot turned inwards by itself and my toes started tremoring as they do - then my leg started jumping up and down like having a mind of its own . She then asked me to push my foot down into her hands as hard as I could and this was causing my leg to do the same thing . I hope this isn't the dreaded alien limb !!!!

I'm quite sure I'm having symptoms in my left arm now too with stiffness and pain at the wrist and muscle pain at the top of it as though someones hit me !!!!!

I did wonder how you were getting on with the splint now and whether it has relieved any pain or helped the spasms etc ?and whether you're still persevering with it ?

The nurse that I saw at the beginning of the week was hinting to up the baclofen I think but she was not the nurse practitioner that I normally see and she cant prescribe medication . I only have one 10mg baclofen before bed every night .. She did say though that she could write a letter to my gp to up the stalevo but we said we'd wait to see what the nurse practitioner says !!!.

Thanks again and hope you're feeling a liitle better with that splint hopefully working for you and please keep up with your perseverance .

All the best

[Pippin123]

Hello cheeky chops

I can appreciate what you are feeling, I felt like I couldn't be bothered with anything. and could not see a way around my situation, I had 6 counselling sessions (your doctor can arrange this). I found it helped tremendously I

Iam not the kind of person who would open up to a stranger, but You don't have t consider their feelings (as you do people who are close to you), so you can talk about whatever you want.

As for the splint I am trying my best but it is uncomfortable and difficult to walk in - nobody said it would be easy, I hope you get sorted out with something that help you. Everyone's experience will be different so I hope I have not put you off the idea.

As you mention the alien limb thing I have only a little experience. MY right foot started moving on its own and would find myself playing 'footsie' with the person next to Me ( it's not too bad if it's someone you know). MY right arm also had a life of its own and I would suddenly find myself. With my hand (complete with handbag) level with my head. This could result in a few funny Looks but. I just hate laugh at myself.

I saw my neurologist on Saturday and he is now referring Me for a sleep test as I always seem to be tired.

What next? I ask myself. Well, who knows. None of us knows what's round the corner. I hope you. Soon feel a bit better, x