Old 02-15-2011, 08:23 PM #1 (permalink)
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Default Insanely itchy?

one symptom I have had for a couple years is the 'itchy' sensation. It use to be only in my feet then it moved to inlcude my legs. Not from dry skin. Its the kind of itch that you scratch and it doesn't go away. Now the itch is pretty much anywhere on the body. The only rash is from the redness of me scratching so hard and long that it leaves a mark. At times I will bleed from scratching too hard and scratching the skin off.

Now a days no place is sacred from the itchyness. It can pop up anywhere at any time. Sometimes if its in my hands...they will swell up to the point of my rings will be way too tight. I have learned if it starts in my hands then I need to take my rings off immediately.

I have tried everything to get rid of the itch. Lotion is soothing the burning of my scratches...but it doesn't stop the itch. Antihystamine will sometimes help but I can only take that at night and its only good for a few hours.

I was on neurontin for years on two seperate occasions...and I am thinking at those times the itch was not bothering me. They had me on neurontin to help with my periphial neuropathy, but the problem with neurontin is your body requires more and more of it in order for it to keep the same effects as it first gave you. So when I hit the max dose and it was not working...I had to wean off the stuff. That is a nasty thing to do..because when you have taken it that long it messes with your pain receptors or something. I would feel like I was on fire as I weaned off slowly, it was painful to be touched by others and even my clothes were irritating. My skin would crawl and feel like little spiders were crawling on me. I hated it. So I will not go back on that drug. I sometimes wonder if its the neurontin that has caused this problem...seems when I went off it I started having the problem.

I have noticed at night the itching is worse. Usually effecting either my feet, hands or unmentionable areas. I find that if I put the offending appendage under very cold running water it seems to feel somewhat better, just as long as its stays under the water. Sometimes I will wrap wet cold wash cloths around whatever is itching. Other times I use an icepack. This helps till the antihystamine kicks in. I don't know if the antihystamine is taking the itch away...I think that it just makes me sleepy enough to fall asleep and not itch. Come to think of it, I can take a zanaflex and the itch will go away if I fall asleep. But I have woken in the middle of the night and started itching...very frustrating.

I am pretty sure this is a neurological symptom of some sort given that its never relieved by scratching and that there is no rash or dry skin as the issue. My question is...do people with PLS suffer from this type of itch? What if any is your experience?
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Old 02-15-2011, 09:04 PM #2 (permalink)
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Default Re: Insanely itchy?

I don't know about people with PLS, but my husband with ALS certainly has suffered from itching. Ketoconazole cream has helped tremendously.
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Old 02-15-2011, 10:22 PM #3 (permalink)
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Default Re: Insanely itchy?

Les takes only 1 Neurontin a day, he has a script that is for 4 a day. He stopped taking it, on the advice of one of his many doctors and the itching came back, so he just takes one a day now, and it controls it.
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Old 02-16-2011, 12:08 PM #4 (permalink)
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Default Re: Insanely itchy?

My husband uses sarna cream which can be purchased over the counter at any drug store. It was recommended by our dermatologist and seems to stop the itching quickly.
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Old 02-16-2011, 12:47 PM #5 (permalink)
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Default Re: Insanely itchy?

Neurontin was the only thing that works for me. I thought I was going to go insane with the itching until someone recommended trying this drug, it has been a life saver.
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Old 02-16-2011, 12:57 PM #6 (permalink)
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Default Re: Insanely itchy?

I guess what I have been fishing for here is if in fact that PLS'ers actually have this as a symptom? I had already did a search and found that ALS'ers seem to have this as a common symtom. This is what makes me go....hmmmm.

Thank you all for your replies. I will keep them in mind as this itching is driving me insane! And I cannot think a cream will necessarily be the complete answer of relief since I have it anywhere on the body through out my day. But the creams might help for the local intense itch that happen on my hands or feet that makes them swell.
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Old 02-18-2011, 02:42 PM #7 (permalink)
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Default Re: Insanely itchy?

Do the PALS who itch have predominantly Upper or Lower Motor Neuron problems? Spasticity or weakness as a primary problem?
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Old 02-18-2011, 03:31 PM #8 (permalink)
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Default Re: Insanely itchy?

Ann, PLS is predominately upper MN and includes spasticity and weakness of voluntary muscles as the primary problem As to itching...I have not seen this listed for PLS or heard from anyone who has PLS if they struggle with it. Since all who have answered so far are speaking of experience with ALS. This is what makes me somewhat wonder if there is something more than PLS I am struggling with. I guess we will see when I go to Mayo.

Which by the way...the Mayo clinic finally sent me the info of the appointment. They have me with a reletively new doctor. This makes me a little nervous because I do not want to go all that way to have a newbie who has never seen PLS. I tried calling them already and they insist that this is the doc for me because she is specializing in neuromuscular diseases. I can only pray at this point, that this wont be a waste of time again.
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Old 02-19-2011, 02:57 AM #9 (permalink)
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Default Re: Insanely itchy?

New, younger doctors are sometimes the BEST. They listen more, they realize they do not know everything, and are willing to find out if they do not know, and are more open to new ideas. Good luck! The elder Head Neuro at the VA is the one who refuses to believe that ALS is painful. We see a younger doc who believes us about the pain.
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Old 02-19-2011, 11:01 AM #10 (permalink)
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Default Re: Insanely itchy?

My memory about the Mayo approach is that they do a team approach and are able to achieve good diagnostic results. However I share your concern that a new doc may not have seen enough patients to have a "sense" about this disease. Some of the senior people have seen over a thousand patients and almost know what is happening without looking at tests.

Perhaps if you are sensing some doubt, you could ask for a second opinion while in the clinic?
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