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elle
27th September 2011, 00:08
hi everyone, iv'e been suffering terrible uncontrolable shakes lately i asked my MND nurse if it was a common symptom in MND she said she had'nt come across it in the 16yrs she has worked with MND patients,this has left me a bit worried as i have been asked by people if iv'e also developed Parkinsons,i am curious to know has anyone on the forum suffered these uncontrolable shakes? mine are in my arms and legs they are not all the time, occur mainly when i'm upset,tired or stressed.:confused:

Barefoot John
27th September 2011, 07:23
Hi Elle,

So sorry to hear about the shakes your experiencing, before you concern yourself that you may have Parkinsons and get yourself even more stressed and worried,

Please seek medical advice from maybe your specialist as they will know what the problem is that your experiencing right now.

The problem i have is when anything goes wrong with me i seam to keep relating it all to my MND but there could be other reasons instead.

I know it's not much of comfort for you but rather than asking friends etc , it is always best to ask the professionals who really know what is what as the stress and worry will make matters worse.

Please, when you do find out the cause of your shakes, can you inbox me with the reasons etc?

I guess it's not much comfort to say to you to try and keep calm as it's not always possible at times

Hugs to you Elle

John xxx

Jeannie
27th September 2011, 08:21
Hi Elle,

Without seeing you it is hard to determine whether your shakes are a symptom of MND or something else. I think you may be experiencing clonus? which is a common symptom of MND.

What is Clonus: Clonus (from the Greek for "violent, confused motion") is a series of involuntary muscular contractions due to sudden stretching of the muscle. Clonus is a sign of certain neurological conditions, and is particularly associated with so-called upper motor neuron lesions such as amyotrophic lateral sclerosis (ALS), stroke, multiple sclerosis or spinal cord damage. Unlike the small, spontaneous twitching known as fasciculations (usually caused by lower motor neuron pathology), clonus causes large motions that are usually initiated by a reflex.

Here is a video showing clonus in the hands http://www.youtube.com/watch?v=z88dkqhMJms

miranda
27th September 2011, 12:29
Jeannie - you amaze me with your knowledge - how come you know so much and can access information on such a wide range of topics? Someone recently said on the forum ' don't Google - ask Jeannie'. I agree.

Countyboy
27th September 2011, 17:32
Hi Elle, As Jeanie has said the shaking you are experiencing is probably clonus. This can be made worse by taking Baclofen (brand names Kemstro, Lioresal, and Gablofen). Very often this is used to counter spasticity (stiffness) but, in some cases Baclofen is over - prescribed. This then can make the clonus much worse. I would advise you to talk to you doctor or neurologist if you are taking Baclofen to reduce the dosage. I was on a fairly high dose of 25mg twice a day but, due to the increase of clonus I reduced to 5mg twice a day. Now my clonus is much less and life is much easier (less shaking). If you are taking baclofen then please remember to talk to your doctor / neurologist before reducing any dosage.
I hope this helps.
Best Wishes,
CB.

elle
27th September 2011, 21:04
Hi jeannie, thank you for the video link watching it there were some identical to my symptoms, i am at Sheffield tomorrow appointment with a professor Pamela Shaw who is so experienced in MND, i will ask her opinion, i need to ask a few things as im not really sure what type of MND i have now as my normal neurologist said i had PLS but my MND nurse seems to think i may have ALS so i need a few things clarifying, i feel you maybe right it could be Clonus xellex

elle
27th September 2011, 21:13
Thanks for your reply Countyboy, i am on 70mg a day of Baclofen which iv'e been on a while i will see my G.P asap reguading the dosage thanks again xellex

Jeannie
29th September 2011, 17:53
Hi Elle,

How did your appointment go?

elle
30th September 2011, 22:31
Not good really a bit of a let down was hoping to see and discuss lots of questions with Professor Shaw but i only got to see her for 2min for her to say she wants me to be admitted to Royal Hallemshire Hospital in Sheffield to go through all the tests iv'e already been through, saw a neuro that works under her he did reflex tests etc had a word with her for her to tell me that so i'm a bit confused with it all really:confused:

Jeannie
1st October 2011, 08:50
It sounds as though they are questioning your diagnosis which might be a good thing ;-) Good luck and please keep us updated x

miranda
1st October 2011, 10:28
Hi Elle, you must be really frustrated with the ongoing lack of clarification and you sounded so hopeful about your meeting with Prof. Shaw and then to only get a few minutes must have been so disappointing. Fingers crossed for you!

Countyboy
1st October 2011, 16:22
Hi Elle, Your disappointment may turn out to be a blessing in disguise. The trouble is a shortage of neurologists throughout the country. This severely cuts the time people like Professor Shaw can spend with patients. Respite care that I get is normally in a neurology rehab ward, and I allways ask to have medical students practice on me. I never tell them what I have wrong with me and let them come up with a diagnoses. It surprises me how many get it right. I ask them all to consider specialising in the treatment and diagnosing of MND, after pointing out the shortage of MND specialists and neurologists in general.
All the Best,
CB.

elle
1st October 2011, 21:34
A big thanks to you all, for your good luck messages and best wishes but i'm indecisive about going into hospital approx 3wks time they said i don't feel i can face all the tests again as nothing they can do can cure me, the only thing i did gain out of the journey was that the neuro that was under Professor Shaw who did reflex tests etc said he thought i had ALS not PLS as previously diagnosed in february.x

elle
1st October 2011, 21:41
Forgot to mention he thought i had CLONUS through high dose of baclofen (jeannie's diagnosis)

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