Grey Skin

[Derek]

My wife tells me that she knows when I am feeling down with the WG as my skin seems to get a grey colour. She seems to be right in her assessment of my condition but I have not noticed the greyness. Has anyone noticed this.

She also says that when I am really tired it looks like I am crying, but I think this is because I cannot stop yawning at the time. Sorry to whinge but I have found it very uplifting to have all your feedback.

Thanks again

Derek

Ps. I have noticed in the last month bruising on two of my toe nails. It is not a fungal (Ugh) infection and the doctors says see how it goes. I have not injured the toes ???.

Thanks

[andrew]

I have absolutely no idea why you would have grey skin, Derek. Is it perhaps a light shade of blue? that would mean issues with circulation. Your toes seem to indicate that maybe there are circulation issues there??

Either way, you'd make a good colour palette for my place as we're investigating repainting inside

[Derek]

Hi Andrew

Proberbly made it sound odd. The colour is more of a greyish palour not actually turning grey. Not easy to descibe.

Hope the decorating goes well

Derek

[jola57]

What is your blood count, seems to me you may be aneamic. I look pale and have dark cirles under my eyes, the tearing for me is from the pred and yawning, that is also why I get double vision.

[Derek]

Hi Jolanta

I have had a lot of blood tests today to monitor including Anca, PR3, FBC & Esr.
I have blood test monthly and something is alway elevated.

Look after yourself

Derek

[firecracker]

I supposedly have wegeners. Im new here. I havent even attempted at my four year long horrid story yet BUT i can say this.. i have been severly iron deficient the whole time. over 20 ish doctors missed this. I turn blue daily. shades of purple on both feet including the under the nails as well. i normally notice that i feel a overall weird feeling when this happens. my veins all pop out too. its always when im doing nothing. never happens when im moving. was your wbc up?

[Jack]

Hi firecracker, welcome to the site.

You sound unsure about your diagnosis, feel free to share your story. We all like to compare symptoms!

[firecracker]

Sorry for the delay but I am sure you all totally understand how difficult it is to do just about anything. So, here I sit after midnight trying to figure out even how or where to start without writing a novel. Basically, i have always had sinus issues since around age 6ish. couple sinus infections each year normally after a head cold. Besides migraines, i was in great health. I didnt even get the flu more then maybe once every two years then came 2005. I sold my house and bought another. At the same time I also changed job locations, not by choice, to a flat roofed old moldy building. The reason I am so unsure of my diagnosis is because first thing that happened in 2005 was massive stuff (sorry people) coming out of my nose. like flesh type stuff. lots of pain.. i actually used to hit myself in the face to distract the pain it was so bad. i would cry like someone being ripped apart. nothing helped but almost scalding water beating my face in the shower or eating ice pops bc it froze the inside of my mouth. This continued on for months on end along with this sneezing over 100 times a day. I went to my primary care doc which really i should say his office. i saw every doctor or pa there. They tried every possible thing there was for allergies while i begged and begged for them to test for mold. "take this". Next, i started having glass like stuff coming out of sores that started as black dots. (this is where i start to sound crazy or where you will think im a meth head-maybe you wont but they all did). I had a roof leak, fell into the fiberglass in the attic while i was putting pans up there. the sores started after that. mainly the side i fell on then spread, turned into impetigo, which then was in my nose as well. i looked up fiberglass allergy and found fiberglass poisoning and how to tell if your house is exposing you. flashlight in the dark. my house was a glitter fest. my skin too. i found out i was breathing that for 2 and half years.. before i figured it out and told the docs. they started blood tests which showed my insane platelet counts and other out range numbers. she mentioned i should biopsy for wegeners. i said.. umm hell no. no cutting in my hurting nose. i looked up wegeners, it mainly only fit because of my septum that was disappearing. also a result that can happen from mold and or fiberglass. i had some balls of something in my lungs. one was an inch, the rest like 3mm. inch one was solid but "does not look like a tumor". after about a year or so the fiberglass chunks (melted resin) that melted into formaldehyde and salisic(surely spelled that wrong) was in my system and made me sick as a dog. i had been on tetracycline for 7 months. meanwhile my nose is really doing some crazy stuff along with my skin. im having what can only be described as "plantlike" stuff but milky colored.. solid though. branching type thing with seed like stuff. this stuff gets bigger until one of my sinuses collapses while im at work in training in the bathroom. blood and insane stuff. so i go to an ent again. before they treated me like a coke head and told me to rinse and take antibiotics. im telling you all this because i really need to know if any of this sounds familiar. at this time, i have no septum and a huge hole on the right side (my sinus wall collapsed). the doctor has to suction for about 5 full mins to even see. then shakes his head asking me if i ever did some industrial strength coke but actually believes me when i say no. i think so at least. he needs new scans but cant when they are too "full of that gunk" and gives me some strong antibiotics saying its overgrown bacteria. i go back ten days later and he says surgery to clear it out because the passages are completely full. i was sooo ready for surgery. i wanted to breathe and taste food. i get surgery and he does biopsy's for wegeners. he said he has never in his life seen anything like my nose. it was like hard glasslike stuff pinkish tan. he spent a long time in surgery. i had the two best days of my life after that. no pain anywhere then all hell broke loose. allergic to the antibiotics given. pain type allergic. nerve damage type. so basically the biopsys came back "we need more" so he cut stuff out of my throat which were sent all over the place. boston, oklahoma, mayo, new mexico, st josephs, couple others. everyone of them said no sign of wegeners. meanwhile my platelets are in the 900's and rising. ancas... all negative. urine test for wegeners negative. right before the surgery i found out i had fusarium fungus. the worst kind to have. it kills 80 percent that get it so for the next five months i am fighting this stuff and down to 88lbs from throwing up from it. it was that gunk in my sinuses and nose/throat... skin...lungs.. the meds cleared my skin up in two days. my lungs.. i have one 3mm thing left. BUT last september i finally went to the mayo with a positive p anca and some docs saying wegeners some saying.. no way. mayo tested 19 viles of blood and got positive c, negative p anca. positive pr3 and mpo. they put me on methotrexate, prednisone, folic acid. i also found out about the iron deficiency that let the mold into my body. ended up on three iv's for that. so since sept ive been on the new meds. i hate them except for the 20 well needed lbs. i decided last week to stop these chemo like pills (methotrexate).i cant take being sick 4 days a week from them. i cant stand not being able to do anything at all. my anca is barely positive. my numbers are all almost in range. my platelets are actually like in the 5's. i told him i am not taking them anymore. i go see him (rheumotologist) tuesday coming up. he is my new one. i fired the last one that was my first one after the mayo clinic. she was an idiot and talked to me like a child. so.. everyone...sorry for this long long story but there is really no other way to tell it besides just listing fiberglass poisoning, fusarium mold infection, iron deficient anemia, maybe wegeners, oh and now i have that turning blue thing from the idiot doctor that put me on dapsone knowing i was anemic. it put me in the er with my oxygen level at 92%. can some of you please tell me what the skin conditions they have look like. nobody seems to fit my description except morgellons. which i would never mention to anyone else but here.

[firecracker]

Hi firecracker, welcome to the site.

You sound unsure about your diagnosis, feel free to share your story. We all like to compare symptoms!

Thanks Jack! sorry for the novel.. that is actually a short story. There is so much more. I need someone or everyone to describe the skin issues. mine are just weird. my ent thinks i dont have wg. he, like myself, my mom and lots of others believe its mold. I have a microscope.. it sure looks like mold.

[Jack]

Although your symptoms would sound alarming to most, they do have a familiar ring to them. I was near suicidal with the sinus and nasal issues that I had in the early days, mainly because the pain prevented me from sleeping.
If I remember correctly (its over 20 years ago now) I had 4 types of skin problem. A fungal infection, blood blisters that would burst and make a mess, some things that looked like warts and others that looked like calluses. However, the nature of Wegener's seems to be that it affects everyone differently so you may have some different ones.
The best diagnostic tool for Wegener's seems to be biopsies. I had both kidney and sinus samples taken (bit of a problem there and I ended up staying in hospital ). The blood tests are in no way reliable from the varied reports on this site and I can confirm that mine do not follow the way I feel.
If you do not tolerate Methotrexate well, I would investigate alternatives rather than stop taking them. The next step down is probably Azathioprine, but I'm no expert so discuss it with your doctor.