Leg lesion biopsy result

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

18 Replies

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  • 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

  • Hey Ludo,

    Gosh so confusing sometimes the dermo didn't know what vasculitis was & now he is saying late stage of vasculitis. Anyway.. thank you for taking the time to comment it Does mean a lot to me, not long now I'm counting down the days :) X

  • Perfect, ludo.

  • 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

  • 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

  • Just sent some pics to you. Thanks.

  • Home now, where did you send them ? Because I can't find them... Pm might work if you haven't already. Thanks

  • Hi, I am looking for some general information concerning this diagnosis. I am a retired nurse and have a grown daughter who is having issues and some old test results is leading us this way. If you pm me, we can exchange information. I am in the US. Thanks, Sherry

  • 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

  • TY Laura. We are just starting down this road also. I would like to talk to a few to that have these swelling episodes. That is what got our attention. She is having a good day. She's actually grown!!!!! Protective mama.

  • 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

  • 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 would say it means they have no idea and you should maybe talk to a vasculitis specialist. Not a Rheumatologist that treats it but one that diagnoses it. There is a difference, you will see. Is the Dr. who sent you that report your Primary Physician? If not, then they should get a report and direct you. If so, Get a specialist opinion. I am in the US, not the UK. But, that is dropping you in the middle. What was going on with symptoms that made them do a biopsy? That is the real issue and does it require treatment or not. Don't want to talk out of turn but that doesn't sound right to me.

  • 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.

  • Dang. I didn't want to over step. But, someone has to call a spade a spade. My daughter has a rare disorder that diagnosed her at 12. That has been a rough ride because she has been as ill as you can get a few times. How do you tell someone to buckle up? I have talked to patients, parents, physicians, some of those were not so good. lol. Mama Bears are protective. Nurse Bears are a nightmare. I couldn't find a Vasculitis support group here and landed on the UK site before I realized it. I did do some inquiring today along with her Dr. and we talked with a Specialist office at Johns Hopkins in Baltimore. They are going to call me back tomorrow and advise us. We are just starting down this road because her new symptoms (Mostly odd swelling from her feet up that comes and goes but progressing each episode). Finally treated it twice when it happened. Not sure it helped. I called a Rheumatologist that treated her for years before her diagnosis back then. She made a judgement call that she thought the problem was either Lymphatic or it has to be in the skin. That we are sure of. When I started seeing pictures of swelling that I asked for after hearing so many stories, I thought it would be the same and it was exactly the same. I about fell over. I saw a lab report from the Mayo Clinic just browsing her old records and found the positive ANCA. I read some medical journals that went further into detail and there is a lot t more than that needed. But, she is lucky in a way that her labs, symptoms, Dr. reports are available from a little one. There is so much to say but I would type forever. Do you have a FB or web address to send pics or maybe a call? Thanks, Sherry

  • 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.

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