Could this be Vasculitis?

[Krawlins]

Hi I’m new here, don’t know that I have Vasculitis so wondered if you’d be able to share some symptoms with me, I don’t necessarily want to visit a GP and ask them do I have it. It’s never been suggested but when I took quinine for cramping in leg/foot/ankle I came out in a red rash on my feet where exposed to sun. I’m covered in those little red/purple spots look like blood blisters and frequently my face looks like this which is horrendous for me, it’s dozens of under the skin blistery, itchy spots, this is the result of me scratching them unfortunately. My skin and likewise mouth, eyes, nasal passages, scalp etc are just all bone dry but no GP has ever linked the symptoms, I’ve been told I haven’t got Sjogrens as I had a negative ANA years back but I also have lumpy painful skin, all underneath, not visible but I feel it. I have asthma, diabetes, sinus tachycardia, arthritis and I’ve had breast cancer, the last few years also very noticeable shortness of breath now and painful joints and stiffness everywhere including emergency op for a slipped disc in 2012 which has recurred. Does anything suggest Vasculitis, my feet are sometimes like blocks of ice up to my calf area where I suffer a lot of cramping. Sorry but the photo isn’t nice and more are the spots! My cheeks, chin and nose are always red and full of broken capillaries and thread veins 😕

Kay x

[Nadine99]

You really should see your doctor. Vasculitis is often difficult to diagnose and sometimes takes a while, so you need to start on the road to sorting this out, sooner rather than later. Good luck

[Krawlins in reply to Nadine99]

Thank you Nadine, I’m always at my doctors as have all these conditions and I feel I’m branded a hypochondriac or what they call one of the ‘worried well’ or even a term my manager used on me “heightened health awareness” which I thought was very rude.

I’ll make an appointment next week 👌

[Hidden in reply to Krawlins]

Hi Krawlins, you are not a worried well, I think you definitely have some kind of AI conditioned. You need to get a referral to a rheumatologist that has experience and expertese in Vasculitis.

[Miriii]

Hi,,

I just read your post & you sound alot like my mum who got diagnosed with churg strauss last year.

She also suffered from leg cramping, numbness, asthma, sinus problems, shortness of breath & then it started to get real bad with purple rashes on her left arm, ( she has lost sensory in her left hand) fainting, nausea, fatigue, loss of appetite, red spots like yours, on her face also ( which got my very curious) and eventually foot drop, untill she went into emergency and thats when they found out she has churg strauss. It was the biggest relief to finally get answers because she had been suffering from asthma and coughing for 10 years before she finally got diagnosed with vasculitis...

1 year on & she is feeling better, lots of rehab and medication, but still does get night sweats eventually.

Moral of the story, push your doctors no matter if they keep sending you back, you demand answers. My mum was at the doctors everyday during the last two weeks before diagnosis, who also couldnt give her any answers, untill lots of blood work was done.

Goodluck & dont give up !

[Krawlins in reply to Miriii]

Thank you Miriii, wish the doctors would take notice just like you have from hearing my list of symptoms, together with this redness and rash of spots I’ve been having headaches, I took an antihistamine yesterday and my face felt a little cooler, I have also had boiling hot red soles before, I have various photos now to show GP so I’ll give it a go again, I also have high ESR and CRP was once referred to rheumatology but was dismissed after 2/3 visits even though first one wrote to my GP to get them to refer me to dermatology and gp refused to 😟. I will check out churg Strauss symptoms as not come across before but presumably it’s a type of Vasculitis. I thank you so much for reading and responding to my plea.

Kay x

[Hidden]

Hi Kay, I would definitely go to the Dr's regardless as that is what they are there for and we know our own bodies when things don't feel right, Thankfully I have a great Dr, he took one look at my very swollen legs and they had a red rash under the skin and said full blood work for you, a week later I was sitting back in his office and he said that he thinks that it's RV (I do have RA) and next thing I know I have an appointment for the Rheumatalogist and a scan for my liver and kidneys as the blood work was horrendous all of the chart. So I go on the 30 July for my app.

I would tell him that you are not happy and that you wish to be referred to the Rheumatologist , he cannot refuse, remember the Dr's work for us and not the other way round, they have a duty of care to keep us pain free etc.

I wish you well, keep us all posted on the outcome as I will.

Marlene x

[Krawlins in reply to Hidden]

Thank you Marlene, I remember in 2017 prior to my hysterectomy I had a blood test pre op and tested positive for irregular auto antibodies, never did know what they were though. Good luck on 30th July, I’m glad you have a good doctor, I don’t think mine will refer me again, I might have to go private?? Take care

Kay x

[Churg]

There is abosolutely no reason why you should pay for private care. In some instances it can be very helpful but for your symptoms you will need a specialist who is fully cognisant of rheumatological and immunological illnesses with an awareness of vasculitis.It is quite possible that there is no one who does this privately in your area (indeed you may find the best consultant is out of your area. You want to do some research and find out who has a good reputation in these medical fields. You may even get a recommendation from this forum).There is no reason why you cannot be referred to such a specialist) .In addition you will need loads of investigations and these are very expensive.

There are several things you can do, consult with another partner in the practice, challenge the doctor who you now see or change practices. With all those symptoms of course you need a referral and it is essential to your well being that you have one. Keep beating at the door and NEVER feel that you are a fraud because you are not. Nor apologise for asking for what you are entitled to. Any of us who have read your post, especially the ones who were not diagnosed for years (of which there are many) would agree that referral is necessary.

[Krawlins in reply to Churg]

Thank you Churg, I called GP, they told me a nurse could deal with my face, it was diagnosed as rosacea which I've been told I had three years ago. I didn't know it couldn't be cured, hence me getting flares like this over the years. She put me on 3 mths antibiotics, we didn't discuss my other issues but I'm seeing her again soon for a diabetic foot check. Don't expect anything to come of that because most symptoms I describe ie cramping, spasms, cold feet and red soles on fire are all explained away as diabetes related, however my last blood test for that was normal. I'll voice my concerns for what it's worth.

Kay

[Churg]

Has the shortness of breath been investigated? That would be a starting point. Keep asking!

[Krawlins]

Yes, peak flows done, but I have asthma and they said "perhaps it's my asthma playing up" and perhaps it is. Now taking a stronger inhaler but makes no difference. I was intrigued when I followed up x-ray results of chest however. They hadn't called me in so I thought I'd call, receptionist told me they'd written "abnormal - as expected". I made an appt to enquire what it meant and was told it showed pleural scarring, when I asked what that meant he said most people my age would have it, I then asked when did it become abnormal and his reply was somewhat rude, he said and I quote "how old are you? 58, I don't know when you were 3, when you were 40??????" Then he shrugged his shoulders, he couldn't be bothered to look back and tell me when it changed so I'm non the wiser now.

My mum had bronchiectasis and I wonder if that's what I have, we both had Reynauds syndrome. I really want an EMG of my left foot/leg as I've had 24/7 fasiculations for 6 years now with no real explanation. I see my orthopaedic surgeon fairly regularly due to a previous slipped disc but I don't feel I'm getting anywhere with anyone, I've just too much going on which is why I honestly believe the whole lot has a name an be it autoimmune or otherwise. It's because I was discharged by rheumatology when he discovered my bulging disc and arthritis because I was then seeing orthopaedics. My ANA was only 1:80 so that was it 🤔

Thank you once again for your empathy and response.

Kay