Evening/morning all
Letter from dermatologist 8th June
Received today
Dear Laura,
This is to confirm your biopsy showed very little, although there was possibly a late stage of vasculitis. There was certainly no way of making a diagnosis from this & if matters are not improved then it is important for you to be seen again.
What does a late stage of vasculitis mean ?
X
No idea Laura but another bit of information to take to Birmingham with you. I'm sure they will be able to enlighten you. X
Hi Laura,
When you get Vasculitis lesions they way they look under the microscope depends on the length of time they have been there. So you can see " fresh " damage to the lining of the blood vessels but rashes etc don't stay the same over time and their appearance will change.
Kidney biopsy is the best example of this as in Vasculitis they usually see newly affected vessels that are oedematous etc and vessels that are showing old damage and are effectively " dead ".
I am not sure that I have explained myself very well! I would ask your GP for a copy of the actual biopsy result to take to Birmingham with you and the results of any other tests, scans etc that you have had.
Hi Keyes,
The dermatologist picked the tiniest dot. That was almost healed.. I had plenty of fresh new ones but he said it wouldn't be beneficial.
As much as I am a little scared about kidney biopsy & things I think I need one. As I've never had one. I had problems with my kidney last Christmas, protein & blood in urine. As you are aware my doctors suspected an infection.. now I'm having the same pain in my flank, dull ache feeling sick all the time. & the pain is bad too.
I have many copies to take to Birmingham so I'm all ready yay ! Xx
Hi Laura,
Sorry it's been a while. I'm catching up on your posts. Lol. It's too bad they didn't give you a wedge biopsy instead of the punch biopsy. The wedge biopsy goes deeper. And I'm really surprised they didn't choose to biopsy the recent lesions/medium sized lesions.
Hey honey,
Ahh don't worry, jeez your have a long read then lol !
I did a new post under triple punch Biopsy - infected ?? That was a fresh lesion.
Hmm, I seem to only have punches done.
This time round though it's been one of the worst infections!
It's still infected even though I'm taking antibiotics.
Do you know what type of organisms/bacteria can infect biopsy wounds?
X
I have had red lumps on my legs twice that made my legs 3x their size, eventually burst and turned into ulcers while causing extreme nerve pain. The only thing that healed them was prednisone. They never figured out what autoimmune caused it.
How did the your situation progress?
I researched the heck out of it, but only found one case that was like mine.
Hi Lauren, sorry to hear that! They are most painful..
yes I can relate to what your saying as I have had a few different lesions all ranging from purpuric rash, too ulceration. As you can see from some of my pictures. I didn't have anything to take for mine, except steroid cream towards the end.
I am ANCA positive with expected GPA vasculitis , so I'm still in the process of diagnosis.
I've not been given any medication or treatment, so I'm awaiting for my appointment next Friday eagerly as it's been a very long time suffering with no proper help.
I have been badly scarred by my lesions.. how has your healed ?
If you want to pm me we can exchange photos or chat about it. X
Thanks for commenting Sherry.
Biopsy was taken by a consultant dermatologist at my local hospital. If you read my previous posts you will be able to have a better understanding.
Due to being thrown from pillar to post over several months I've finally be referred by my doctor to a specialist vasculitis clinic in Birmingham. I'm positive for ANCA vasculitis suspected GPA due to exhaustive symptoms. Recurrent sinusitis, multiple Granulomas on my lungs. Extreme exhaustion, aching joints night sweats etc. Many lesions appeared including purpuric rash on my limbs which I had to beg for a biopsy as they said I didn't need treatment for GPA. & I shouldn't worry.
deteriorated very fast over the last few weeks so this appointment is paramount !
This professor I am meeting specialises in ANCA vasculitis & thanks to this community & Keyes for educating me on vasculitis & what treatment & care I need has helped me to get to the point I am at. Otherwise my doctors would still be neglectful, pumping me with antibiotics & leaving me in limbo.
I'm currently suffering with cardiac issues.
& kidney pain as well as other things.
I have mild Neutropenia, & very low white blood cells, Anaemia & serum folate deficiency.
Night sweats?! For over a year I was plagued with 24 hour sweats - feeling burning /freezing at the same time, crushing fatigue, and weird sinus stuff were my sinuses would swell and deswell while I watched.
I fired my rheumatologist and PCP because they dismissed all the symptoms and ignored that I was so sick. I was desperate so I found an acupuncturist. Nine months later and I am almost cured. Of everything autoimmune - it's a freaking miracle.
I still don't know have a name for what was going on but the great thing about Eastern medicine is that you don't need a name to treat it.
Hey Hun,
Yep night sweats ! Bugger
I know how you feel 😮
For so many years I've always been cold, even in hot weather, always had low blood pressure, I still get cold hands & feet that turn blue & purple.
But since January 2017 my blood pressure started to rise getting higher & higher. The night sweats started in late December 2016.
To the point where i would wake up drenched. Windows were wide open, fan on full. I even ended up having no choice but to sleep in my birthday suit! As wearing just a nighty would be totally soaked. It was like a cold sweat at the start, & then gradually I felt like I was on fire.
My partner was shocked because I was always the cold one like an icebox. & when I started heating up he couldn't get his mind round it.
As confusing as it is, I spoke to my dreaded doctor about it, She said I could have an Infection I could have this & that. But I said if you were to sleep next to me at night only then would you be able to see & feel how bad it really is.
I think with the night sweats I'd wake up in a state of confusion, very hot, dizzy, cold clammy feeling. Nauseous.
I'd have to get out of bed either have a shower or pat my body down with a cool flannel.
Last night I woke up exactly the same. But I think & hope that it's just the infection in my leg. (Biopsy site)
I had it from Late December 2016 to May 2017 I started to cool down at night which was a blessing & now June 2017 it's back. So not much of a break but I cherished the moments in-between.
My blood pressure Friday was 140/70
That's the highest for me..
Think my inside are like lava. 😖
Hi sherry,
Yes let's pm, it's always good to exchange info as I'm still in the process of understanding & educating myself..
as I haven't a firm diagnosis yet I'm sure I'll have one very soon.
Give my love to your daughter x
I spoke with Sherry yesterday - she is an amazing advocate warrior who can tell you all the tricks and methods to get medical types to take you and your disease seriously. I am sooooo glad and relieved that we have each other to talk with about this stuff.
I will reply once I've walked home & settled. As i would like to talk more. ⭐️ it's 11.20 pm here, what is your time zone ? X
Home now, where did you send them ? Because I can't find them... Pm might work if you haven't already. Thanks
Wow - so much the same - if anything I have been cold, particularly in my hands and feet - but then they would get too hot when they were covered.
But usually I was pretty good with body temp until February 2016, when all the hellish new symptoms started. I also would soak the bed. It started out has hot flashes but as time went on, I would get freaking cold flashes too. And sometimes I would be freezing and baking at the same time. And sometimes the sweat would be very greasy or like jelly - WTF!?
Thank God it is at bay at least for now.
I feel your pain sweetie.
I just wonder what the hell it is?
I sometimes wonder if it could be an odd strain of Lyme or a co-infection. Ticks are thick here and where I grew up on Long Island, NY. Lyme is rampant everywhere I lived - my dad died of Lyme in his brain and spine (another long, hellish story of medical neglect).
I will be very interested to hear what your you get as a diagnosis since so many symptoms are similar.
I know right !!
Mine was like hot flushes.. the room could be normal temp, but to me I felt like I was sat in a volcano !!
I can relate to the greasy sweat, mine always seems to cold & somewhat salty ! Vile I know.
I know some of my Lymph nodes are swollen in my neck & groin but I haven't had any other answers.
I was tested for Lyme. Negative-
I live by the river chelt. So it runs right outside my parents house. I've been in there a few times to rescue the neighbours dog. But it's full of god knows what !! Ticks ewwwwww be careful !
Sorry to hear about your dad 😢bless him ❤️
As soon as I get any diagnosis or answer your be the first to know x
Yes I had Day and night sweats (hot flashes) bad for a while (October to February) lol.
X 
Adult HSP iga nephropathy
GCA Diagnosis, Arm/Leg Vasculitis?
Biopsy injection 
Do many people suffer with food allergy with Vasculitis?
MRI result says possible Vasculitis, feeling confused
