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New Diagnosis & Newbie Here ... Long !


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#1 Jersey-Itch

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Posted 09 January 2007 - 04:53 AM

Good morning everyone! I'm a very unexpected newcomer to vasculitis. I hope that I'm in the right place, at least for now.

Bottom line first, I had a skin biopsy done last week which came back diagnosed "Leukocytocastic Vasculitis".

As brief as I can be :rolleyes: , I started to have an itch in my scalp in spring of '06. It was the exact same place I had dandruff when I was pregnant in 2000. Because "a brand name" tar shampoo worked before, I got it. Didn't work. The itch was on and off. A couple of months went by, and I started breaking out with bug-bite like welts on my shins. The itch was akin to poison ivy. Some of the "bites" would break open easily. In July, a "bite" appears next to my swimsuit strap; intensely itchy, and breaks easily. In August, a patch of almost chicken-pock like bumps (but didn't break) appeared in my cleavage - again intensely itchy. It (and my shin) was waking me up at night.

Early September, I decide to go to my new General Practicioner. She says I have some kind of dermatitis, and gives me Methylprednisone. The leision on my chest eases some - but not my shin; it's worse. I decide to go to a dermatologist.

I go to the dermo. She looks at what I have, and says it appears to be Folliculitis. She gives me Prednisone, and Keflex (an antibiotic). 3 weeks later, I still have the condition, except my chest pretty much clears up. The dermatologist decides I have Scabies (because now, I'm starting what looks like a burrow near my my waistline). She prescribes 3 applications 5 days apart of Permethrin (a mild insecticidal lotion). It does no good. But now this REALLY is looking and acting like Scabies ... even though typically you don't get scabies in your hair. I had bumps and lines in all the right places though ... bends of arms and knees, ankles, side of foot. And the coloring was *right* too. Sort of pinky-red, and the bumps were very uniform in either a line, zig-zag, or "hooky" shape. Lymphnodes above my ears are VERY sore and swollen. I went to my very well-known allergist for a second opinion. He took one look and said - "You need to use Lindane (a VERY neuro-toxic insecticide) 2 days in a row, then a week later; some Scabies are resistant to Permethrin".

SO, I use *one* covering of Lindane, because I'm VERY nervous about using it two days in a row. My rash almost TOTALLY goes away. A week later however, it's back. But now it is limited to scalp, chest, and one spot on hip-point. Dermo now believes it's NOT scabies - but not sure what it is. She gives me a THIRD round of steroids ... but then says "If this doesn't work - I don't know what to tell you." :o Suffice it to say, I think she prefers to stick to Botox injections and mole removals ... B) She NEVER did, nor suggested a skin biopsy. She said that skin for Scabies area often inconclusive. It's now the end of November.

Anyhoo, needless to say, the 3rd round of 3-week Prednisone didn't do much at all. So, I decided to see a new dermatologist - a university professor and chief of department. She's not sure about scabies, but looks at my written history of what went on and decides to give me a non-toxic pill-form substance that works on killing Scabies. But, she's not sure that I have it at this point. SHE does a skin biopsy ... and the rest is history.

So here I sit with an itchy chest, shoulder-points, scalp, and now left ankle. I'm supposed to go for a blood test tomorrow to determine, if possible, what the cause of this is.

My sample contains "lymphocytes, neutrophils, eosinophils, and nuclear dust".

After this test, I had to really think back on my health over the last couple of years. I remember getting some itchy bumps of the same sort on my shin back in 2003, but, there were only a couple of them and they went away.

In Feb 2006, I had a rare form of a Strep infection which morphed into Epiglotitis - and I was hospitalized for several hours.

This past summer, I had a deep ache in two of the knuckles of my hand. Wondered if I was starting arthritis - my father's mother had bad Rheumetoid Arthritis.

So at this point I'm really not sure what's up. Perhaps this was a secondary result of the Strep. My dermo says it's not impossible that I did have scabies - and that it could have resulted from that (not likely, but not impossible).

I guess my biggest question now is, if what I have is the lesser-serious kind of vasculitis ... can it morph into something worse?

Thanks for reading - if you stuck with me this far! Any advice - information appreciated.

#2 Sweet

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Posted 09 January 2007 - 07:27 AM

Hi Jersey!

I want to welcome you to the forums, I'm sure sorry it's due to your itchy problem! My goodness you sound like you've been patient through all of this, I think I'd literally be crawling out of my skin!

I have included 3 links for you to review below, that might help you with some of your questions.


Morphea

Skin Diseases similar to scleroderma

Vasculitis


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 Jersey-Itch

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Posted 09 January 2007 - 08:28 AM

Thanks for those links! I'll check them out later this afternoon.

I am anxious to see how those blood tests work out. My symptoms see to cross a couple of different diagnosis's within the vasculitis family ... hoping it's just the simple LV one. If it is, I bet it resulted from my strep infection last year.

It's been a difficult several months. It makes me angry that my first dermatologist didn't do a skin test after the first misdiagnosis ... and then thinking I had to use those pesticides - a total of 9 times! :angry:

Anyway ... I'll read those posts later ... thanks again for providing them. I'd like to know all I can about this condition.

PS - is it normal for the skin rash to itch like poison ivy? I kind of had the impression from looking at some of the pictures on line that there isn't much of an itch. My itch would flare during the day; but mostly at night (I think this is why 2 doctors were convinced I had Scabies) and if I was around moist heat (like during cooking).

Thanks again for any and all information, and the invitation to join.

#4 Heidi

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Posted 09 January 2007 - 02:58 PM

Hi,

Welcome to the forums! I am glad you found us, but sorry it is due to your recnet diagnosis of vasculitis and the long road you have had to travel for diagnosis. I hope you do get a chance to read the information that Pamela gave you in her post and that you find the information helpful.

Please do keep us posted when the blood work comes back and let us know what you find out.

Warm wishes,
Heidi

#5 janey

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Posted 10 January 2007 - 04:45 AM

Hi Jersey,
Welcome to the forum! WOW - what a ride you have been on thus far. Hopefully you'll get something more conclusive soon so you can start working toward an effective treatment. Many of us have been through that anger at one doctor or another. I worked with two different doctors during the development of my symptoms and neither would give me so much as a blood test! One attributed all my symptoms to age (I was 49!) and the other one attributed them to weight. Yes, I was heavy but weight didn't cause Raynaud's, tight skin and muscle weakness! Anyhoo - changing doctors was a great idea! I hope this one continues to work in your behalf and gets some answers for you. Please keep us informed!

Itchy skin - My skin always itches, not near as much as it used to, but now that it's winter and dry here, the itch is increasing so I'm using more and more lotion that seems to reduce it.

Big Hugs,
Janey Willis
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#6 Jersey-Itch

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Posted 10 January 2007 - 05:12 AM

Those were very good and helpful links - thank you!

I really am swimming around here, wondering exactly what's going on.

Since about mid-2004, I've had noticable hip pain when I would get up after sitting for a period of time. I even remarked to some of my family that I might be an early candidate for hip-replacement. Ironically, when I took up Yoga this past September, the hip pain went away. I had to stop Yoga because of all this itch-stuff; but, the hip pain has pretty much stayed away since September, except I do get an occasional twinge when I get up.

I also have pretty significant reflux. I find myself wanting to take a Pepcid AC nearly every day at some point.

Don't know if this stuff is all related ... but at this point it wouldn't surprise me.

I went to get a blood test this morning ... results should be available by Friday (hopefully).

Thanks again everyone -

#7 Sweet

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Posted 10 January 2007 - 05:18 AM

Hi Jersey,

I'm really glad the links were helpful to you. I'm also glad you are looking for answers to your health problems. What type of blood test did you have this morning?

We'll be anxiously awaiting results right along side you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 debonair susie

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Posted 10 January 2007 - 10:31 AM

Hi Jersey,
I've got my fingers crossed... that this all gets figured out soon for you!
It concerns me that insecticide treatments were used, without a definitive
diagnosis. This all reminds me of when my dermy (he is normally right-on with DXs)... I hadn't yet been diagnosed with Scleroderma, yet my body (inside and out) was in full flare... from Psoriasis, "we thought". After only 2 PUVA treatments, it was obvious it not only worsened my condition, he told me that "there's no way the PUVA treatments could be causing such a problem"! (I was due to have 2 surgeries for carpal tunnel... each wrist...starting the following week, so I refused future treatments). It was a very frustrating/confusing time until my diagnoses came about. At that time, my rheumatologist and I were able to see the relationships of my symptoms... all of this was connected!
Anyway, short story long, I just wanted to share this... to demonstrate "another faux pas". To be fair... because symptoms can present differently, it can be difficult for doctors to pins down. We just wish they could have everything ironed out by the time we get to these points, right?

Sending Hugs your way....
Susie
Special Hugs,

Susie Kraft
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#9 janet905

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Posted 10 January 2007 - 03:06 PM

hi everyone,
scabies in humans and pets is often called a "ruleout diagnosis"". this means if it is suspected then it is treated. this is because the sarcoptic mite is extremely difficult to find since it is often in fairly low numbers and burrows deep in the skin. skin scabies rarely produce even 1 mite. they do, however, cause extreme pruritis (itching) and can look like other skin disorders. the dermatologist guys don't want to be accused of missing this curable skin disorder or even worse , treating someone longterm with worse meds such as prednisone which could even mask the real problem. this often happens with pets. the treatments aren't very dangerous and the newer treatment (not a pesticide) is very safe and 100% effective. so the treatment is often the diagnosis ( if it goes away, then it may be sarcoptic mites.) that is what I mean by a ruleout diagnosis.
janet

#10 Jersey-Itch

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Posted 10 January 2007 - 04:01 PM

Thank you Janey, Pamela, Suzi, and Janet.

Pamela - I don't recall what was on my prescription for the blood test. There were about 5 different items she wanted done; one was a panel of something - and I remember one was a CBC-something. 2 viles were drawn.

I kind of had that impression that Scabies was a "rule out" thing. When I went into see dermo#1 the third time, she decided that's when it must have been scabies because the Keflex and Prednisone basically did nothing. And I seem to recall her saying, "If Prednisone doesn't work - it's Scabies." :(

I will say one thing ... while I think there was a chance I did have scabies at one point (I had actually had canine-scabies which I caught from my now-deceased dog in 1994) - I'm pretty sure it's been LV the whole time. Neither my husband nor my son got infected this time ... getting infected is common you know if you have scabies. Usually people in your family pick it up quite easily. Pet-type scabies (ie. Sarcoptic Mange Mites) don't live on human hosts for long, so it's easily treated. Human-type can be a different story.

But because all those scabies-treatments didn't really entirely work; and my family didn't get symptoms ... I think it was LV the whole time.

#11 janet905

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Posted 10 January 2007 - 06:54 PM

hi again,
typo correction. I meant skin scabies rarely produce even 1 mite.
in other words, no easy test for this condition.
janet

#12 janet905

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Posted 10 January 2007 - 08:03 PM

hi yet again,
I must be really tired! I meant to say that Skin Scrape-ings rarely produce a single mite for microscopic exam. sorry for my brain drain. I hope your tests give you some answers as it is very frustrating to be in the dark for so long . most of us have been there (strange rashes and all).
janet

#13 Jersey-Itch

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Posted 11 January 2007 - 03:50 AM

Thanks Janet. I kinda figured everyone here would have some similar experiences with tossing diagnoses left and right in the quest for the right one. :huh:

My rashes are now majorly subsiding.

I have a question. Let's say this IS autoimmune related. Because my rash is majorly subsiding, would the blood tests STILL show an autoimmune condition even though the rash was "in remission"?

#14 janet905

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Posted 11 January 2007 - 10:04 PM

hi jersey,
you ask a good question. a person that has a systemic autoimmune disease such as lupus ,scleroderma, etc. may have periods when some of the symptoms may appear to go away, but the disease itself rarely goes away . the bloodwork should still show some or alot of abnormalities even if the person is in remission. esp. if not on medication. these diseases affect so many different things in our systems, we may only focus on what we can see or what causes pain. I hope you don't have an autoimmune disease but if you do, I hope you can get some answers soon.
janet

#15 scampie5

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Posted 12 January 2007 - 09:59 AM

Hi I had scabies as a child it is very contagous very itchy and effects most of the body can cause blistering I also have vasculitus which is how my general practitioner diagnosed my scleroderma due to questions she asked about how I felt did my bones hurt ( oh yes) I thought it was the menopause I also had bad nose bleeds as vasculatus is due to problems with the blood vesils hope this helps Lynn

#16 Jersey-Itch

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Posted 15 January 2007 - 08:33 AM

Thank you Janet! That was very helpful. My dermatologist seemed to imply that if my blood tests came back normal that I should be in the clear. I hope that's the case. Fankly though, even if my blood tests come back normal, I still want to see a Rhumetologist to discuss what happened; my history; and what I should do from now on and/or what to look for in the future.

My scalp is still itchy and bumpy in some places. But the rest of me seems pretty calm now.

Lindy - thanks that did help.

My bones don't hurt; but, I have had very deep pain in some joints - but it hasn't lasted long at all. The one I have now is my left elbow. The pain is on the outside part seemingly between my top and middle bone (middle bone being where the point is) if you know what I mean. I don't know if I did something to it (don't remember); or if this might be related somehow. I can't grab anything with appreciable weight and lift it. This has been going on for almost 3 weeks now.