PSP Spasms

[Prius1]

My wife was diagnosed with PSP some 3 years ago and is now suffering regular pain and spasms in her legs, she is on Co-Caroldopa 4 times a day and our GP as tried numerous medication to stop these spasms, occurring about every 4 hours but nothing seems to work, as anyone suffered similar condition and got an answer to this dreadful condition,, we would be very much obliged for someone to share their thoughts if suffering the same or similar condition

[Millidog]

Sorry to hear this. Im sure others on here with more specific experience of this symptom but in the meantime it may be worth using the search box on here as I think there have been a number of posts and useful responses. Additionally the co- careldopa can have such side effects. If you Google side effects it will explain more. My husband had a very negative reaction physically and we were advised to slowly reduce and then quit . Neurologists will often advise slow increase and if side effects then go down route of slow decrease in hope of getting best fit dosage x

[Prius1 in reply to Millidog]

Thank you, your comments are very welcoming, we are having to wait a long time for the next appointment with the consultant neurologist ad I am not sure if our GP is understanding the administration of the Co-Caradopa as it is a specialised area,i will take your good advise and ask Google

[Millidog in reply to Prius1]

It be worth contacting your neurologist for advice xx

[Bergenser in reply to Millidog]

This tallies with our current experience, my husband has had benefits from Co-careldopa for nearly 3 years but now I am seeing a pattern of twitching and spasms after each dose (20-30 minutes later) so am working with the neuro-nurse to step down and try to balance effect vs side effect. The overnight (slow release) Cinemet seems particularly difficult. Magnesium and sports drinks (w/electrolytes) help a bit for painful cramps and restless legs, these symptoms appear to be very common with PSP.

[Prius1 in reply to Bergenser]

Thank you sharing your experience, I have since been told that Botex is a good remedy for spasms and I have to contact the Parkinsons nurse to arrange for this, also they have increased her morphine patches from 5 mg to 10 mg, it apparently makes you very sleepy for about 36 hours then after that period it supposed to be very beneficial, I will report back at a later date to let you know how it worked out

[Stella315]

what would relief my mother was EMS patches and also regular nuero massages and acupuncture. I would also give her CBD. I found that if you would massage her inner thigh down to her knee it would stop the spasms. My prayers are with you both during these new challenging new symptoms.

[stevew999 in reply to Stella315]

What is an EMS patch?

[Stella315]

hi you can get this on Amazon or Best Buy

Electrical magnetic stimulation

[Sun-flowerwearer]

Hi Pruis1

My husband experienced repetitive painful muscle spasm in his left bicep and GP prescribed Buscopan tablets and this has helped.

[LuisRodicioRodicio]

HI Prius1!

muscle cramps, spasms and stiffness:

In our case we not detected major episodes of muscle cramps or spams.

A low level of calcium or the incorrect level of electrolytes in the blood can cause tremors. In our case, to avoid these kind of problems, we take three additional measures in the diet:

1) In the daily diet we include in the breakfast a quantity of fresh cheese combining with a small quantity of citrus fruits (orange, lemon, strawberries, etc.) and in the meals some egg yolk or fatty fish. And just as important as the incorporation of these kind of foods, whenever the circumstances arise, we expose the patient to the sun discovering legs and arms. The idea is to favor the presence of Calcium in the diet as well as favor the generation of vitamin D.

2) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

3) We base the meal programming on the Mediterranean diet, favoring the presence of fruit, vegetables and legumes without forgetting the presence of meat as a source of vitamin B12.

We combat stiffness in hands, arms and legs with gentle and persistent massages. We have read that the drug "Baclofen" can help in some cases. Ask Physician.

Isotonic drinks are interesting to help maintain blood electrolytes at the correct level. Lack of the proper level of electrolytes in the blood can cause spasms.

Hug and luck.

Luis

[AmberLucky]

My mum is suffering with the same issue.

St Catherine’s hospice have just prescribed an anti epilepsy medicine called pregabalin and has helped.

We are also looking at reducing her co carelodpa down.

We have experimented with so many different CBD oils with no benefit. I am a big fan of CBD. However we have just tried this one and it’s the first one to help…

amzn.eu/d/iTdAEbI