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#199 - 11/20/00 08:38 PM Has anybody heard of nerve damage in the skin related to ichthyosis?
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Hi folks, I am desparate for some feedback. I have Lamellar Icthyosis. I have been having some really bad problems with my lower right leg. After going through a bunch of tests, I was sent to a neurologist who determined that I have nerve damage in the cutaneous layer (if my spelling is wrong, forgive me) of my skin on my lower right leg. Has ANYONE else here ever had this happen to them (nerve damage in the cutaneous layer of skin)? We do not know if it is at all related to my ichthyosis but would like to find out. He's searching for information but doesn't strike me as a computer literate fellow, so I thought I'd ask around online. Thus far my search has turned up zilch!
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I am female, and was born in 1972 with Lamellar Ichthyosis.

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#200 - 12/06/00 10:22 PM Re: Has anybody heard of nerve damage in the skin related to ichthyosis?
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I don't know if anyone is watching this section at all as no one has replied, however, I have some information to share.

It is quite likely that the nerve damage I am experiencing is due to the swelling in my leg. Because my skin doesn't stretch, it's compressing everything and thereby damaging the nerves. If you end up up with prolonged swelling (more than a day) please go see your doctor and do everything you can to reduce swelling. I have been swollen in various parts of my right leg for three months now, and the nerve damage is continuing to spread.

Unfortunately, we still don't know what's causing the swelling, but that's another story. If it ends up being related to icthyosis at all, I'll post.
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I am female, and was born in 1972 with Lamellar Ichthyosis.

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#201 - 12/08/00 05:05 PM Re: Has anybody heard of nerve damage in the skin related to ichthyosis?
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Chandra,

I think people have read this topic, they just didn't have anything to add. I know that's what happened with me--I did read it, I just didn't have any experience with this myself (and honestly, I'm not sure I've talked to anyone else that has).

I'm glad you posted some more about what's happening. I was hoping you would, so I could learn some more about it. Just because I haven't had this problem yet (especially if it's related at all to ichthyosis) doesn't me I won't sometime in the future!

I'm sorry if you felt like no one even read it.

Laura

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#202 - 12/08/00 05:42 PM Re: Has anybody heard of nerve damage in the skin related to ichthyosis?
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Thanks for replying... I didn't mean to sound so grumpy there. To give you further updates, the doctors still haven't found the cause for anything I'm going through right now. The approach they're currently taking is to treat the symptons. Now the dermatologist, neurologist and general practitioner are discussing putting me on Accutane or Soriatane so that my skin will be "better." My husband and I think that unless the Accutane (which I've been on before, along with what I think is called Methotrexate) makes my skin more elastic or supple, it's not going to affect anything. I've been searching on the web for information from people who've taken these drugs and so far it sounds like many of the side affects outweigh the good the drug can do. I posted in another area on the site asking for people to tell me what POSITIVE effects the drugs have had on them. Maybe this will help me come to a decision.
I also am probably going to go see a dermatologist in Seattle that specializes in Ichthyosis. (I live oustide of Portland, OR) I'll keep you folks posted on what happens, and will let you know even if it turns out top be something totally unrelated to ichthyosis.

[This message has been edited by Chandra (edited December 08, 2000).]
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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