Hereditary spastic paraplegia & parkinsons diagnosis


#1

Hi, I have been diagnosed with Hereditary spastic paraplegia & Parkinson's. Does anyone else have that?


#2

Hello Peonie very nice to meet you and thank you for comment on my post. I have never heard of that condition and will have a look and sorry to hear you have now got the Parkies as a young person also. I will say hello properly later which probably means a very long, long insomnia curing post as have to leave for work. Hope you have a great bank holiday and again nice to meet you.

JP


#3

Hello MrjohnnyParky.

Thank you for your reply. :) I know of three others who have Hereditary Spastic Paraplegia & Parkinson's disease. I am a committee member of the Hereditary Spastic Paraplegia Support Group UK. I have met another member of the support group in person at the HSP AGM in June this year. He agree's with me that it's a bit of a bombshell having both, as I am guessing, if we only had HSP, we might very well be more mobile... Saying that, there is a complex version of HSP, which apparently, I have. Along with the other three.  

For restless legs at night I take amitriptyline along with baclofen, two hours before bed, to control the restless legs and nerve pains/cramps etc. Along with the daily doses of Sinemet. I have recently upped my dosage, as the symptoms are coming back. I was on one tab, three times a day. Now two tabs three times a day. I suffer badly with sickness after the midday dosage and usually throw up about an hour after taking it. I have to take anti sickness tab with it to stop it. I am told it will get better. I hope so, because the symptoms are controlled. Digestive system, speech, swallowing/choking, shaking and weakness etc.

I'd be interested in how others cope with it.

Thanks again and have a great weekend. :)


#4

Hello all.

Before i was diagnosed with HSP, the last few years or so, I noticed a musty smell on my skin. I kept asking family members to smell my skin! They all sad " I can only smell perfume". Which I was grateful for... Although, I could smell it. I was paranoid about it and frustrated that no one else could verify it. I washed and washed to get rid of it, but it just came back.

Well, here's the thing... Since I've been taking sinemet, the smell has gone. Thank goodness!... So! I'm thinking that I could smell Parkinson's on myself????... Maybe it is the lack of dopamine that causes the delightful aroma of Parkinson's??? Hmmmmm Interesting. Not looking forward to it returning in the future!... Oh! and my sense of smell/taste has come back now I am on sinemet.

Anyone else?


#5

 

 

Hi Peonie - what a bummer that is finding you have PD on top of having HSP. I can;t say I have noticed any sort of smell on myself and no one has commented. I too have lost my sense of taste and smell, I am on Ropinirole and Sinimet, and have'nt noticed any difference with taking Sinimet, so lucky you! I would love to taste something! Hope you stay focused and keep fighting.

Take care - Sheila


#6

Hi Shefinn,

Yes, it is a strange one. The thing is that I think I might have the one condition. Every time I see the symptoms etc, it just fits… Although I’ve had symptoms since at least 2000. So, it’s really all up in the air.
I can taste bacon again. Before I took sinemet, I needed two heaped spoonfuls of coffee to get a taste. Now I need just the one.
Thank you for replying. :slight_smile: One thing I have noticed is dyskinesia (uncontrolled movements) jerking etc. Do you get that. Apparently, its a side effect of Levodopa.
Anyway, thank you your reply and yes, I will stay strong… :smiley:


#7

Hi Della = I don’t have any problems with dyskinesia at the moment (but watch this space) the only problem I have is with the virtually constant tremor. I also suffer with the cramps especially at night in bed. Apart from these two problems I cope the best as I can, that is until the next problem rears it’s ugly head!

Sheila


#8

Hi Shiela,
I’m lucky at this time the tremors/shaking is being controlled by taking sinemet three times a day, five hours apart.
Do you get a low during the day? I do at approx 3pm til 4.30 when I go really quiet and can’t think… hard to talk properly and slowdown and get sleepy :zzz:
Della.