Another dr to add to the the growing list

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straydog
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   Posted 8/25/2009 4:16 PM (GMT -7)   
Well friends, I got online this am and found myself a dermatologist that takes Medicare and my health ins. I have an appt scheuled for Sept 3 so I am in high hopes of finding out just exactly what this skin condition of mine is. I know my rheumy says it crohns related and yes it very well could be, however,  I need help with how to get all of these blisters and raw places healed up. I am tired of having raw exposed skin on the bottoms, top and sides of my feet.
 
This mess has also appeared on both hands including the palms, totally covered with clusters of tiny blisters like hives. These are beginning to dry up and the skin is peeling and cracking open, same as the feet. It is a complete mystery. The rheumy sent my PCP a letter about me and he put one of those mile long names on this and neither one of us have a clue what he is talking about. That seems to happen alot these days.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 8/25/2009 5:15 PM (GMT -7)   
OK girlfriend, enough is enough. Now you had to go an get skin crude to top it all. Listen to me.....it stops here and now....do you understand. No more doctors, no more body part involvements, no more nothing....at least for another week or two.

FatherJohn - do they have special skin crude prayers or will the generic ones works?

You are in my prayers.

Stella Marie

Co-Forum Moderator for Chronic Pain

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump  & neurostimulator.  Extra features: O2 & wheelchair

 Not all of us can be Cinderella, but some of us can be Fairy Godmothers.......

 


White Beard
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Date Joined Feb 2009
Total Posts : 3611
   Posted 8/25/2009 6:15 PM (GMT -7)   
straydog
You don't have psoriasis  do you? there are several types Pustular psoriasis sounds like what your describing. or Plaque Psoriasis. Anyway I wish you luck with your dermatologist appointment, and I hope they can give you something that can help you, if you do have Psoriasis there is medicines that they can give you to put on it and usually they are pretty effective!
 
 I do hope the Doc can help You!
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 8/25/2009 7:29 PM (GMT -7)   
Susie,
So sorry that you have yet another challenge. The mountain of them is so high for you! I'm glad you found a dermatologist who takes your insurance, and I hope you can get some answers - and some relief.

Hugs,

PaLady

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 8/25/2009 9:07 PM (GMT -7)   
straydog said...
The rheumy sent my PCP a letter about me and he put one of those mile long names on this and neither one of us have a clue what he is talking about.


Was it Pemphigus erythematosus?

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/26/2009 12:41 AM (GMT -7)   
Bionic,
Ok, no fair. Dropping names but not telling us what it is! wink

I hope it helps Susie, but if not at least it'll give her something to play word games with. rolleyes

Sorry...it's nearly 4am!

PaLady

bsjaguar
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Date Joined Jun 2009
Total Posts : 974
   Posted 8/26/2009 4:09 AM (GMT -7)   
Does it have 7 letters? Maybe I can use it to win big at scrabble.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 8/26/2009 4:23 AM (GMT -7)   
You can make half the dictionary when you play anagrams with that name redface

Pemphigus is a category for an autoimmune disorder where the body attacks a particular protein in the skin cells, causing clusters of blisters that break, then kinda scale up, and leave areas of patchy, raw, red, irritated skin behind that are difficult to heal. There's 2 main categories of pemphigus and each one has a couple of different variations.

Pemphigus erythematosus is a variant of Pemphigus foliaceus, which is localized and attacks the upper layers of the skin. The reason it came to my mind in particular is because a lot of research has suggested that particular variant is a "combination" of Pemphigus foliaceus and Lupus.

Several years ago, I knew a man that had it. Once he found a dermatologist that actually knew what it was, he was able to work with that doctor, in conjunction with a wound care specialist, to get it under control. Prior to that, he really struggled with it and it was really hard to watch, but not be able to help at all. shakehead

Post Edited (BionicWoman) : 8/26/2009 5:26:01 AM (GMT-6)


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 8/26/2009 11:43 AM (GMT -7)   
Bionic,
You never cease to amaze me!

Seriously, this sounds like it could be very helpful for Susie (not that I thought you'd be giving her info. that wasn't...oh, this isn't coming out right! rolleyes).

And it's not even 4am so I have no excuse. Maybe I should go back to bed.
smhair

Susie, please forgive my off course ramblings. It's just that Bionic always has these tidbits of info. so I tell her she'd be great at a cocktail party and we're supposed to go to one but she never accepts my invitation! shakehead

PaLady

straydog
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Date Joined Feb 2003
Total Posts : 13481
   Posted 8/26/2009 1:58 PM (GMT -7)   

OMG BionicWoman wow. I can tell you as far as the feet go its really strange because the blisters are inward deep into the layers of skin, not your usual raised blisters. When they actually begin to dry up the skin is like a callous, very hard and peels off in layers. I lose several layers of skin during this peeling process. Its like the skin dies off. about the only thing I can do is once the skin start peeling I trim it because I am always catching it on my sport socks. I has even got on my toes. A few weeks ago when the cellulitis hit, I had many blistered areas pop up on my toes and they were all red, hot & infected. I firmly believe whatever this skin thing is, is the culprit to the cellulitis. Back in Dec of 07 the dr found a small cut on my foot and said thats what caused the cellulitis this. My feet look extremely dry and when it first started I did not have dry feet, always made sure to lotion the feet. Yes, this crap is very painfull, makes it difficult to walk when there is so much rawness and cracking open going on. This has been going on over a year now and no relief. The rheumy has me using Clobetasol cream which honestly does not help. The info packet says its a super-high potency corticosteriod and the warnings on this is wild. Not to be used for more than 2 weeks, can cause withdrawals when stopped, can cause Cushing disease, can suppress the HPA's, its really a wicked cream for sure. The dr says that also with me being borderline diabetic its hampering the healing too.

Forgot to mention in all the wildness lately I have known for years I have bilateral carpal tunnel with my right hand being the worse of the two. Thats a a very old dx. Well, lately when I wake up the hand pain is something else. So, I went and got fitted with braces to sleep in at night to help with this. The dr says this is the best way to treat this. I hope they help because I have been dropping things and do not realize they are dropped till you hear the crash when it hits the floor. My strength is pretty much shot, its nearly impossible to open anything with a lid on it.

PA I do agree this would make a good brain teaser the info Bionic Woman gave. Bionic Woman I do so appreciate you telling us about this, I just have no clue as what is going on. My hands are so bad right now when in public I try to hide them, very embarrassing. The feet I can hide with shoes & socks.


Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 8/26/2009 8:55 PM (GMT -7)   
ROFL PA.. don't worry, you made perfect sense to me. Does that mean I should go back to bed? redface

I promise, someday I'll go to a cocktail party with you! I have such a screwy sleep schedule these days, I never seem to be around when it's chat (virtual cocktail party?) time.

Susie, if your dermatologist sends you in the direction of pemphigus, I think I still have some articles around that I can dig out, if that'd be helpful for you. It's pretty easily diagnosed by a skin biopsy. They take the sample off the side of an active blister, so it's not like a punch biopsy or anything terribly painful - with "painful" being relative to the disease process itself!

When they talk about the "upper layers" of skin, they don't mean blisters like you'd get from touching a hot stove or a sunburn - they're deeper than that. If my memory serves me correctly (which it doesn't always, these days!), Pemphigus foliaceus sticks to mainly to the 5 layers of skin that make up the epidermis, whereas Pemphigus Vulgaris (ain't that a great name for such an ugly, mean disease?!) attacks deeper cells into the dermis (under the epidermis), the mucous membranes, inside the mouth, and down the throat as far as the vocal chords.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 8/26/2009 9:36 PM (GMT -7)   
Bionic,
Yikes! That sounds like one heck of a disease! Vulgaris sure would cover it!

I sure hope that's not what Susie has, although maybe if it's treatable Susie could get some relief!

hugs to you, Susie!

PaLady

Piercings
Regular Member


Date Joined Aug 2008
Total Posts : 326
   Posted 8/26/2009 11:35 PM (GMT -7)   
I'm guessing that the doc that gave you the clobetasol was thinking pustular psoriasis or some other psoriasis variation. Clobetasol is very commonly given with psoriasis. It's something that I use on the psoriasis, and for me it's really effective. The only problem that I have with it is that due to the long term use (it's been many years since I hit puberty and it showed up) it has thinned out the skin in the areas that I've had to treat the most often.

I wish I had some answers for you, but it sounds like psoriasis can probably be safely ruled out.

Hoping you can get some relief...
Curious people are interesting people, I wonder why that is.
Bill Maher


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13481
   Posted 8/27/2009 1:35 AM (GMT -7)   
Whatever it is I just want it gone. Its painful, very ugly and nasty looking. I do soak my feet alot in Epson salts, just to being doing something I suppose. No, the Clobetasol has not been effective at all. My hands are in the drying out stage too and I have small areas of skin that are split open. I made the mistake of using germ juice the other day and wow did it ever set me on fire. I am at a total loss and feel someone out there surely can help me with this mess. The dermatologist I am seeeing is one my daughter saw many years ago, she has porphyeria (skin type) and I probably spelled that wrong to boot. She really liked the guy and was quite pleased he is now accepting ins before it did not accept any ins. I would keep my fingers & toes crossed but I have been having charly horses in my legs all day. My legs are so sore from those stupid things. I need to eat some bananas.
Straydog/Susie
Moderator Chronic Pain
 
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/27/2009 10:45 AM (GMT -7)   
 
 
Dear Susie,
 
      I am glad you got in to a new derm dr. As I was reading yoru description I was wondering, does it "spread" from itself? You like "bacteria rashes"? I wonder if something like Calendula creme? Would sooth the areas to keep them from cracking and peeling until you can get in to the doctor? I wish I could help in some way. Stay strong
*warm huggs*
   dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

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