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Vasculitis?

Posted , 3 users are following.

mandy47449
mandy47449

Hi Im here for advise really.

Ive been unwell for a year now, had obvious things ruled out, but just seem to be gettimg worse.

I wo t bore you with all my symptoms but its mostly pain (not muscular), itching & burning. The areas that hurt are redder than other areas & have broken capillaries, odd raised spots (not a rash just the odd ones come & go in same areas of pain) & occasiobal bleeding into skin. Had other symptoms since it started in my neck, scalp, jaw & temples including hearing probs, personality changes (very dulled consciousness), thirst, rapid weight loss, shaking, nose bleeds etc.

My heads getting so bad i cant even put my hair up. My scalp feels like my hair is being pulled. My friend is a nurse & came over as worried. She did some sort of blanch test, pressing on the redder areas &:said there was too long a delay for blood to fill back up. She asked if ive beed tested for vasculitis. Ive no idea. I know ive been asked about it before. Especially when having blood taken as they have oroblems getting anything out of me.

Im open to any suggestions at this stage.

Do these symptoms sound like anyones experince of vasculitis? I dont want to start pressing for tests if its not likely.

But if so, which tests would confirm it?

Cheers,

0 likes, 9 replies

9 Replies

  • philtw
    philtw mandy47449

    Posted

    I'm sorry it doesn't sound like GPA or PAN vasultis, which i have and had.......as they are mainly joint pains, nodules on the elbows and afftects mainly the lungs, kidneys and nasal passages.

    however it could be another form, as the nodules sounds like the ones i had.......

    • mandy47449
      mandy47449 philtw

      Posted

      Hi thanks for the info. My nose & lungs are affected but just sore & stuffy wuth some nose bleeding. Thats the least of my probs tho.

      What are nodules? I have some odd bumps under skin where it itches badly & swollen knee & hip but no big lumps or anthing.

      Yeah i found out lots of different types.

      I dont have any big rashes like the photos ive seen. Just odd sore spots & blòod dots under the skin.

      Anyway thanks & I hope you are doing ok ☺

  • wendy62425
    wendy62425 mandy47449

    Posted

    Hi Mandy

    i have similar systems pain burning itching...feeling like I have lumps under skin.  Doctor feels like I have both Chronic Urticaria and urticaria Vasculitis.  I would really recommend that you seek a specialist allergist/Immunologist to treat you and get a skin biopsy done.  If you do have Vasculitis...the sooner you get treated the better. What kind of doctor are you seeing?  Are you taking any medications?  Are you in the UK or US?

    Wendy

    • mandy47449
      mandy47449 wendy62425

      Posted

      Hi there, cheers for your help.

      I'm in the UK.

      It's frustrating as taking so long for them to figure it out. I'm waiting for a neuro appointment due to declining neuro symptoms but not hopeful as they were not very pleasant when I was rushed to A&E a while back. I thought rheumatology dealt with vasculitis?

      I'm taking Pregabalin, Tapentadol & naproxen. And B vitamins as B1, B2 & B3 deficient. That's it. I've had an mri of neck arteries but no contrast so didn't show the smaller vessels.

      I don't have the obvious rash many seem to get but the tiny unhealing spots & discolouration I do have look like other types of vasculitis.

      I'm getting scared as my cognitive function is really getting bad.

      My neck & skull feel like I've been in a bad accident. It's constant & declining

      I hope you are well,

      .

    • wendy62425
      wendy62425 mandy47449

      Posted

      Hello Mandy

      eveidently there are so many forms of Vasculitis.  How does your neck and skull feel? Also cognitive function is effected?...describe what you mean. When diagnosed with Vasculitis you can be seem by various doctors. I have appointment with Rheumatology Not until Oct 27. I'm currently having to take cyclosporine and just needed to add Prednisone again....it was keeping hives away for a few days but woke up with the Vasculitis burning one in my hand and can feel lumps on my scalp that start to itch....little sleep tonight.  I am trying to seek help with more natural way of treating to heal the body.  May try Chinese or homeopathic doctor....no insurance coverage with them though....but if they can help it will be worth it.

      let me know how you are.  Hand in there girl!

      Best,

      Wendy

    • mandy47449
      mandy47449 wendy62425

      Posted

      Hi Wendy, thanks for yr reply.

      The head & neck pain feels like I've been in a bad accident. Especially skull base & cones through into throat area. Very itchy too. Feels like the tissue is angry & irritated. Not like muscle aches. It's hard to explain but unyielding.

      Cognitive function: again hard to explain. It's like brain fog times a thousand. Like my brain being squeezed. Very slow, unable to engage in conversation much & sonetimes dknt recognise my surroundings. My personslity has totally changed. Very jumpy & feel like I'm going nuts.

      The bumps / spots that keep appearing in places of pain but never heal are here:

      http://postimg.org/image/oug8x9y89

    • wendy62425
      wendy62425 mandy47449

      Posted

      Oh Mandy....I'm so sorry you are going through this.  When is your neuro doctor appointment?  Try to ask for a cancellation appointment if it's too far away as you are experiencing these issues.  I just did that with my Vasculitis appointment and moved me up.

      im going to try Chinese medicine acupuncture and herbs....going to try a more natural way of healing.  I have appointment on Monday. I'll let you know how it went. I'm having a better day..of course due to all the meds...but it's nice to have some relief....

      take good care Mandy.  Keep us posted......try to get cancellation for sooner neuro apt.

      Best,

      wendy

       

    • mandy47449
      mandy47449 wendy62425

      Posted

      Good luck for your appointment. Hope it goes ok.

      Out of interest how did u get diagnosed with vasculitis?

      I'm not hopeful re neurology as the one I saw after being rushed to hospital earlier in the year was very rude & unhelpful. My family want me to see a neurologist in London but my GP thinks I should try again here before resorting to that.

      Thanks for your supportive words ☺

      Take care,

    • wendy62425
      wendy62425 mandy47449

      Posted

      Hi Mandy

      whatever it takes to get help....go to the BEST......and seek help as soon as possible.......make both appointments, nearby and in London....always good to have second opinion!!

      i wish you well dear Mandy.  My Vasculitis appointment is in a week.

      take good care!

      Blessings, 

      Wendy

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