Puffy legs and ankles

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Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
City
Bridgetown
My hubby for the last few days has started to get puffy legs with his skin feeling tight, he is just starting on his third packet of riluzol, could this be a side effect of the riluzol?
He is still mobile on his legs with the help of his walker.
Thanks, love Gem
 
I do not think this is riluzole. At least I have not heard of it It is fairly common for PALS to have swollen legs I think even though he is up and about but it could also be something else altogether so maybe get it checked. Having ALS does not make us immune to other issues and you want to be sure he is not retaining fluid
 
Hi Gem, My dad just started having the same problem. He was complaining that his skin was tight and stretched and there was a lot of edema in the ankle area. He was on Riluzole but stopped due to appetite issues. As with your husband, he is also still mobile but definitely not moving as much as several months ago. He was advised to elevate his feet above his heart which he can't do because his diaphragm is affected. The other day I posted about a situation we had where his foot was cold, blue and had no pulse. He went to the ER and they said it was peripheral artery disease. The visiting nurses have said it can just come from the heart having to work more. Probably a good idea to check with his primary just to be safe.
 
Get it looked at Gem, hope your GP is available on a Saturday...
 
My wife is no longer able to walk and she often has swollen ankles. She also is on riluzol and has been since May.
 
Thanks everyone, he has woken up today with normal legs but I will definitely keep an eye on it, we will send off a email to his MND specialist. Maybe BJ has been doing to much, he is due to have another round of full bloods done in the next couple of weeks before we return for his next 3 month check up with specialist.
Love Gem
 
That's a great sign Gem.

I don't know how it's been over there but the heat here seems to be so much worse than many previous summers.

Try to look at how you can elevate his feet a couple of times during the day today, make sure he gets plenty of fluids and you can try some gentle massage before they get to the skin tight stage.
 
Thanks Tillie you are a wealth of information. The weather has been rather mild considering its Summer , high 20's low 30's (that's celcius) for all our American friends, normally at this time of year we would be getting high 30's to 44 degrees which I think is about
110 F, as I don't really like the heat I am enjoying our mild weather .
Love Gem
 
wish I was there, we are getting so many days high 30's and into the 40's, and with the humidity here it's just stifling!

Let us know how you go with those legs!
 
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