Itching - something to consider

I have read many discussions on this site from those of you (like me) who are suffering from severe itching. Although I haven't officially been diagnosed with neurosarc yet I found a great neurologist in Dallas who diagnosed me with peripheral neuropathy which can be a symptom of neurosarc.
He explained that peripheral neuropathy can cause severe itching because of the inflammed nerve endings in our skin. Peripheral neuropathy can also cause joint pain and other symptoms but this is the first time anyone has offered an explanation of the severe itching I've had for over 2 years.
So, if you have itching you might want to consider that you could have peripheral neuropathy which is a symptom of neurosarc (and other diseases) but it's something to think about. This would explain the deep intense itching unlike hives and other dermatological conditions. I've seen 15 doctors over the past 2 years and no one has ever offered this explanation. I've been prescribed creams, antihistamines, lotions, prednisone, etc., but until the neuropathy is addressed nothing will completely help this debilitating symptom.

Edited June 30, 2010 at 1:53 pm

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Hi Janyi,
What is the name of the Neurogolist You are seeing?

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Hi, Granny. I'll send you an email.
JJ

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The only thing that helps me is zyrtec. Does not make it go away, but it make's it feel more like an allergy itch than the itch that makes it difficult to think about anything else. If i forget to take it one day, it's back to sitting in a hot bath most of the day, or drinking a whole bottle of wine (which is not recommended). i tried claritin and allegra before settling on zyrtec.

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CentralFloridasarc,

My itch is also better with Zyrtec and if I don't take them regularly, (at least 3 per day) then my itch is unbearable and hot water is my consolation. The fact that hot water helps us makes it sound like a nerve itch.

Have you seen a neurologist?

JJ

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Yes. Had CT and MRI's but this was all before they knew it was sarc. So far my only radiographic findings are in my nodes(lots and lots of nodes) and lungs. I do get little facial twitches here and there, but they do not last long and it seems lots of non sarc people get them too, so i have not really wanted to go see a neurologist. I'm a bit tired of being at the doctors office contantly, so I have decided to just move on live life. Of course I will be geting more Ct's in a few months.

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Well I certainly understand being tired of the doctor's office.

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That's interesting that it might be neurosarc. I have other symptoms of neurosarc also (hearing loss, vision changes, neuropathy in my ankles) so I have an appointment with a neurologist to be scheduled as soon as we get a biopsy done.

I have granulomas in my liver, also (another biopsy that needs to be done) and elevated liver enzymes. That can cause itching so that's what we were certain it was. The neuro issue gives me hope that maybe they can make it stop.

I'm a dermograph on top of all the itching, so once I start scratching, it forms hives. (I once wrote my nail with my fingernail on my forearm to demonstrate this to a doctor. "Just wait 2 minutes," I told him. And sure enough, there was my name. Just like I wrote it.) We've been treating that with vistaril as needed. It works, but even tho my script is for 1-2/night, if I take more than a half, I wake up two days later. So, I try to be very judicial and only use them when I can't get sleep any other way.

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Benadryl is the only thing that helps the itching for me.

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I often have to scratch my legs with a knife edge to get relief. MY skin is extremely dry in that area so i a not too sure if it related to my sarcoid. I have been suffering from headaches daily and my vision is blurry find i have trouble concentrating. Just another day in the life a sarcoid person!!

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I am currently dealing with an itching flare-up that has been going on for about 2 months. I have been dealing with these flare-ups for about 25 yrs. It is mostly in ny arms and shoulders. Every night I have to sleep with frozen ice packs. The cold numbs my skin and helps me relax. I also take 50 mg hydroxyzine. I have noticed that even when I have itching flare-ups in the winter, Ice cold compresses really seem to ease the pain and itch. I am going to call a specialist tomorrow. I really hope it doesn't take too long to get an appointment. I have only been to lung specialists, and that was years ago. I had an appointment with a rheumatolagist in January and missed it. I had a referal to see him. Do I actually need a referal. I am also wondering if I should be seeing a neurologist or immunoligist instead. Does anyone have any input on this?

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If you have severe itching and have not had a liver panel done, please ask your dr. to include that on the next labs you do, or go get blood drawn just for that. Itching was the only symptom I've ever had for Sarc and have severely scarred liver from granulomas. This is irreversible if not caught early. You are looking for high AST, ALT and Alk. Phos. If you don't have high levels there, you can probably rule out liver involvement and move onto other possible Dx. Good luck.

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The itching I have is not as severe as yours but taking Lyrica really helps. Also rubbing the itch with a rough towel sometimes helps if it is where you cana reach or you have a helper. Liz

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If it is peripheral neuropathy (and I am pretty sure it is).......what do you do for it? I've tried lotions and cortisone stuff and nothing works. I'm sure it is enraged nerve endings.
Thanks for any help.

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When I had neuropathy in my ankle, they gave me prednisone for it's anti-inflammatory props and Lyrica.

It worked for me.

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Dlrs,
A neurologist could confirm by a few simple tests in the office. My neurologist confirmed in my first visit. The next step is to determine what is causing peripheral neuropathy and then treat that. Many things can cause it. My doctor suspects neurosarcoidosis and will confirm through MRI, EMG, and nerve biopsy. Once he knows it's neurosarc he will treat with Lyrica.
JJ

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This is really interesting to me. At night i seem to scratch all night long. Nothing helps. It feels like it's inside. When i take any type of pain meds it makes me itch even more. If i can't handle the pain, which is rare for me, I take 2 bendryl wait 1/2- 1 hour then then take the med. Doesn't stop it but makes it easier to handle.
My Neuro say's i've HAD neuro sarc but she doesn't think i have it now. I agree with you...I think i do have it. My feet hurt, they swell up, i get what i call restless leg. I take requip for it but it doesn't always help, with the leg problems.
I took Lyrica...but my tongue swelled up and i started retaining even more water, which is always around the middle and makes it harder to breath.
Wouldn't it be nice if we could get all of the GOOD DR'S together and maybe they could figure out what to do with all of us.
I have an appointment in Aug with a new Rumy Dr. I hope he can help.
Good luck all.
Your always in my prayers.

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This is really interesting to me. At night i seem to scratch all night long. Nothing helps. It feels like it's inside. When i take any type of pain meds it makes me itch even more. If i can't handle the pain, which is rare for me, I take 2 bendryl wait 1/2- 1 hour then then take the med. Doesn't stop it but makes it easier to handle.
My Neuro say's i've HAD neuro sarc but she doesn't think i have it now. I agree with you...I think i do have it. My feet hurt, they swell up, i get what i call restless leg. I take requip for it but it doesn't always help, with the leg problems.
I took Lyrica...but my tongue swelled up and i started retaining even more water, which is always around the middle and makes it harder to breath.
Wouldn't it be nice if we could get all of the GOOD DR'S together and maybe they could figure out what to do with all of us.
I have an appointment in Aug with a new Rumy Dr. I hope he can help.
Good luck all.
Your always in my prayers.

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DiLyn,

Your itch sounds a lot like mine. It does feel like it's deep inside and almost painful. At times I feel chilled it's so severe. But I also get restless legs at night.
The neuro said all of my symptoms are due to peripheral neuropathy.

Very grateful for Zyrtec.

Take care!
JJ

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