Different Temps in Legs

[Nuts]

OK, I need some advise here.

Matt has always put out a lot of heat, but he's a serious hot potatoe now. What's odd is that one leg is very very hot and the other is icy cold. I'd expect them both to be cold from lack of circulation

We put a call into the VA doc and the nurse called back and left a message that she'd like us to go to the ER.

Is the VA speak for we can't get him in so go to the ER so that we aren't on the hook for a guy who wants an appt and cant get it, or is it a sign of something bad.

My first thought is blood clots, but there is no extreme swelling or pain that points to clots (and we use a lymph pump on his legs twice a day for an hour at a time)..

What do you think?

Oh, this has been going on for about 5 weeks now

Becky

 

[Nuts]

I should add that this difference does not exist all day, but usually at the end of the day. He can even spend an hour with the compression sleeves on his legs and when I take them off, one is hot and one is cold. In the morning they are the same (not extreme) temperature.

Oh, and he's not interested in going to the ER.

 

[Nikki J]

My initial reaction was yes ER could be emergent but 5 weeks and it comes and goes? It does sound circulatory but it only happens after the compression sleeves? Or is it possible it is being in a sitting position is compressing something at the knee or the hip? Is it the whole leg or just lower?

I would ask again for an appointment emphasizing intermittent and 5 weeks. I would also experiment to see if I could narrow down the precipitant

 

[lgelb]

Hi, Becky,
You say "no extreme swelling or pain." Does that mean any unusual swelling, color changes, itchiness or pain at all? If so, I would press the VA or whoever you get orders from for an order for a Doppler study at the local hospital.

If not, my first thought would be that the pump settings need adjustment for his progression, and I would call the firm you got it from.

If you go to ER, they are likely to order the same study anyway.

What happens when you massage the cold leg manually?

I would also think about recent liquid intake.

Best,
Laurie

 

[azgirl]

Hey Becky, I experience the same thing intermittently, war one leg is icy cold the other hot. I attribute it to circulation issues, and massage seems to help a little. It has always resolve on its own, but always good to get it checked out.

When I turn into a hot potato it helps to have cold compresses on the back of my neck and chest. When I turn into and iceberg and helps to have hot compresses placed on my abdomen and hands.

 

[BlueandGold]

I have the exact same symptom. One leg super cold and a purple foot. 15 minutes of massage and back to normal but it is like that every single evening. Compression socks don't help. Been going on for months. No pain but ankle swells. Goes down after massage. No way in hell I'll go to the ER.

Vince

 

[Diane H]

A hot leg with swelling, redness, and pain would indicate a clot in a vein. The best test is an ultrasound but the second best is flexing his "toes toward his nose." Pain when you do this to him would be a good but not absolute indication of a clot. DO NOT rub or massage his leg if there is any suspicion of a blood clot. There is danger of pieces breaking off and traveling to his brain (stroke) or lungs (pulmonary embolus causing scary shortness of breath). He really should have the ultrasound done. It is an easy outpatient procedure even with ALS complicating the trip.

Blood clots will dissolve slowly on their own over several weeks so it is possible he has a resolving clot. The fact that it is resolving doesn't mean there is no danger of pieces breaking off. A blood thinner doesn't dissolve the clot but does help prevent the clot from enlarging or new ones from forming. If an ultrasounds shows a clot, they will want to put him in the hospital on IV Heparin and oral or feeding tube Coumadin (warfarin). Being in the hospital is not at all a good thing for an ALS patient! Ask, even demand. that he be sent home on Lovnox injections. A visiting nurse can come to the house to give the injections or teach you to give them. These injections are not into muscle, just under the skin. The medication is in a prefilled syringe so the dose is always accurate. The injections sting for a few minutes and leave bruises from the concentration of the anticoagulant. Putting pressure on the injection site for a couple of minutes may reduce the bruising. Not fun at all but beats the heck out of being in the hospital when you are helpless. I have done it both ways and being at home is my preference.

A cold leg would indicate an arterial clot but that is extremely painful and you would have hauled him to the ER by now! An arterial clot is even more serious and a medication to break down the clock very quickly is needed. This type of drug carries more risk so hospitalization will be necessary.

 

[Diane H]

Is the VA speak for we can't get him in so go to the ER so that we aren't on the hook for a guy who wants an appt and cant get it, or is it a sign of something bad.
Becky

It means he needs to be seen and have an ultrasound done right away, and the ultrasound can't be done in the doctor's office. Bad things could happen if it is a clot, and, if so, treatment needs to be started today.

 

[chally]

Vince, me too! Exactly like you said my left is warn/ normal / purple temp my right is purple and as cold as a corps. Both ankles swelled we massage them then I am in bed next day things ok and put braces back on . I use braces for transfers from pwc to whatever I am gonna sit in. This has been going on for at least a year and I am not going to any er either.
Was told yeah it's circulation. OK moving on!

 

[Nikki J]

Curious- Kay, Vince , Chally and Matt/ Becky, is the cold side the more affected or sooner affected side? I don't think anyone in my family had it but it sounds common?

 

[BlueandGold]

Yes my right leg is the weakest. It's the one that's cold

Vince

 

[azgirl]

For me it was left leg, the first affected. It was very scary the first time, but now I just accept it and wait for it to pass. It is not painful really, just annoying.

If there was pain associated I would think blood clot and seek medical help immediately.

 

[tripete]

What causes us to be Hot Potatoes? My wife will come home from work and now that fall is here the house will be under 50 degrees Fahrenheit and I will still be hot. My toes might feel cold but I am boiling.

 

[GregK]

I am now the other extreme.
I was just getting comfortable when the inside temp hit 80.

 

[chally]

Seems both sides of my body are equal in weakness which is to say all limbs are very weak and I have to be careful at everything and need much help. My right foot& knee are the cold ones but the left can get cold too.
It is interesting that a lot of us have this !