Legs spasms and catheter blockages

[Primitivepotter]

My Husband has slipped into an MSA diagnosis after being diagnosed with Parkinsons and then PSP. He is treated with dopermine still and we have noticed that if he misses his does he gets very painful spasms in his legs. Does anyone else suffer from these. Also he has endless blockages with his catheter and is waiting to have bladder stones dealt with. Any advice from fellow sufferers ?

[MF31]

My husband takes medication for cramps and stiffness and they have helped especially at night. He wears a sheath catheter and it is always blocking so interested how other people cope as well.

[Primitivepotter in reply to MF31]

Thank you for sharing - it is somehow helpful to find one is not alone in these problems. Would you mind sharing what sort of medication he takes for his spasms. We have noticed that P’s spasms nearly always relate to forgotten dopermine if that is any help

[MF31 in reply to Primitivepotter]

He takessinemet 3 times a day definitely helped though he also gets painful feet and gets relief if he uncovers them at night it is all really strange.

[Orla789 in reply to MF31]

Hello Welcome to the forum , sorry to hear your husband has had this diagnosis. I have MSA and was initially put on a trial of Sinemet when the consultant started suspecting Parkinson’s disease or Parkinson’s plus. It seemed to help my walking, posture, the bradykinesis (slowness) and slow quiet speach. Unfortunately these benefits didn’t last and the Sinemet doesn’t appear to be helping the Parkinsonism symptoms anymore. However if I try weaning of it I feel much much worse with more severe muscle cramps and tremors. I find any beneficial effect wears off quickly so after experimenting I take 1 Sinemet plus every 3 hours. I also had awful restless leg syndrome at night which meant I couldn’t sleep. Dopamine agonists patches (that make dopamine work better) stopped the restless leg immediately. However a drug to extend the domaine action , entacapone, appears to have had no effect. I rattle by the way! 😃I have recently been fitted with a urethral catheter and so far it’s been no trouble but has vastly improved my quality of life. I can’t walk hardly at all so it’s such a relief not to have to get to the toilet especially at night. It’s increased the places I can visit as I don’t need a disabled loo, I hope your husband is offered a better solution.

Wishing you both good luck on the MsA journey.

[Primitivepotter in reply to Orla789]

Thank you so much for your very helpful reply. We have opicapone which I guess is much like Entacapone. Dopermine has never improved P but he definitely has muscle spasms when we forget it. Good luck with the catheter.

[MF31 in reply to Orla789]

Has your husband ever had where his feet get frozen to the floor I had a bad episode with him last night trying to move him closer to the bed was middle of night so probably seemed extra long to me.

[Orla789 in reply to MF31]

Hi it’s me rather than my husband but don’t worry about that. Yes, I have that all the time now especially when trying to turn or reverse and for the first few steps in a straight line. I find ‘cueing’ using a metronome really helps And just being calm and trying to take it slowly. Look up cueing or ask a neurological physiotherapist or the msa trust nurse about it. When all else fails the OT has supplied a stand and turn device which is a god send when I am tired,

[Primitivepotter in reply to MF31]

Yes quite often. I find it is usually when his knees are bent and so getting him to stand on the foot before he tries to move it quite often helps.

[FredaE]

msa meds are all trial and error and what is good for one is either useless or worse for someone else.l Sinemet (dopamine) is med for parkinsons and you often find it does well with Pd symptoms but makes others worse and you have to balance one with the other. time of taking it iscrucial. Pd havea slogan "on time every time" which they use get hospitals to follow correct times. My husband benefited from it for years but i had to work hard to get them to take the timing seriously

[Primitivepotter in reply to FredaE]

Yes I agree about the timing - my telephone now blasts out and irritating little song which has made a big difference to taking pills on time. Funnily enough although my husband is mentally completely on the ball and has a brilliant memory, remembering his pills does not feature ! All the best to you

[binnyrox]

Hi

I had a Foley Catheter but was still getting infections. The urologist changed it to a suprapubic catheter and it’s been excellent - zero infections and much easier to manage

The procedure took less than 30 mins in the doctors clinic and no Anaesthesia required

A nurse comes by every month to change it

I’m also on Uro-Vaxom that prevents recurrent infections. I was also given Urobiotic - something akin to probiotics for bladder health

Hope this info helps

Best regards

[Primitivepotter in reply to binnyrox]

We are on the verge of having a suprapubic catheter but my husband has a terrible problem with bladder stones. This is a very ignorant question but does a suprapubic catheter stop incontinence from the normal route ? It is very encouraging to hear of your experience . Thank you for sharing

[binnyrox in reply to Primitivepotter]

The urine will pass through to a bag. It will not exit via the normal route. I find it very clean and there’s been no infection since. I was advised to take about 2.5l of fluid daily. (I do not have pre-existing conditions that is contraindicated for that volume)

Glad to help. Just ping anytime you have queries and I’d be glad to answer if I know

[Primitivepotter in reply to binnyrox]

Thank as binnyrox

[Courgettegrower]

My husband went through at least 8 catheters in a couple of weeks with the balloon popping! The DN came to the conclusion it was bladder stones and he has been referred to urology. Since then the catheter has stayed in place for the last 3 weeks. However we went to the first urology appointment the suprapubic catheter was discussed and I think we are going for it as long term it is considered less likely to cause UTIs. He does have a prophylactic antibiotic daily and, touch wood, has been fine since taking it.

Jenny

[Primitivepotter]

Hi courgettegrower, I might be called the same name except perhaps this year i would more likely be called marrowgrower! Your poor husband …that sounds much worse than my husbands catheter problems. We are now on the list to have his bladder stones blasted….not quite sure how but usually with a laser. They are going to keep him in overnight which worries me as I have to do everything for him and his speech , particularly when in pain, is very poor. All the best with your visits to urology and lets hope all goes well with his catheter until then