Need to be diagnosed

[Merelanew]

Hello! I have not yet been diagnosed but the doctor threw out that he thinks this could be the beginning stages of vasculitus. I've been trying to find answers to what's going on with me fir about a year and a half. I'm just curious what your very first symptoms were and any blood tests that signaled there was a problem.

My symptoms are - fever, chills, I have 3 blue/purple toes, my right leg goes completely numb, joint pain in my hands, shooting nerve pain in my arms, unable to regulate body temperature. I do not have a rash which I know a lot of times that's present but didn't know if it always had to be present to be vasculitus?

I've tested strong positive for histones (which points to drug induced lupus - but I take no medications or drugs), high for ACE blood levels, ANA was positive with a speckled pattern.

Thanks for any insight

[Hidden]

Hi! Rash is not always present with vasculitis!!!!!You have all other symptoms.Hope more suffers will answer yours post so that it from me.Be brave as it is hard co cope with this deassese Regards

[Merelanew in reply to Hidden]

Thanks! I wasn't sure cause ever picture I see shows the rash, but good to know that! I should also mention I get night sweats (not every night - maybe once a month)

[Hidden in reply to Merelanew]

So you have to check what is wrong.CT scans,blood test.I had night sweats each night/3-4 times changed pyjamas,my bedding.Please do not search so much for pictures-I had rash but do not see any pictures of it.Find a good doctor.Good luck

[Hidden in reply to Hidden]

On this forum are some very experienced "warriors" knowing vasculitis.Hope you will gem more post.Regards

[gibson100]

I would say that if your doctors think you may have symptoms of vasculitis do not hang around.push hard for a full diagnosis.Quickly.

DAmage is being done while while your doctor thinks about it.

[arcr]

Hello! I would agree with a previous post... push hard for a diagnosis! One thing I have learned about autoimmune vasculitis is that no 2 people experience the same set of symptoms or reactions to medications. This is what makes these illnesses so difficult for science to treat and what makes them so frustrating for us as sufferers. For example, I haven't had any of your symptoms except only a bit of numbness. I had a lot of feeling hot and swollen, brain fog and dizziness, some fatigue..just a general sense of not being right. All blood work came back normal and negative. Then one day , while at the grocery store, I lost vision in my right eye. From there I was diagnosed with retinal and systemic vasculitis.

Make sure they run as many genetic autoimmune blood tests as possible. Scans are limited in their usefulness if, like me, you have small/medium vessel vasculitis because they just don't show the images well enough to look at that size of vessels ( even with contrast dye). But like I said, everyone is different. This disease is a very personalized/customized one....so push them do every test possible, learn as much as you can, and advocate for yourself as much as you can. Good luck and keep us posted.

[KLC18]

Hello - I am also recently diagnosed with vasculitis after 2 years of hemming and hawing by various doctors. In 2016 I developed joint pain and swelling, particularly in my hands and feet; developed Raynauds syndrome; exhausted; suddenly developed severe migraines and headaches; mouth ulcers too. Then the burning started in hands and feet which finally got my GP's attention. As arcr above, scans worse than useless for me because "it" is happening to my small and medium size vessels. I have developed small fibre nerve damage in hands and feet (which at least showed up on a biopsy!). Never had any rashes. All blood work normal expect for Hepatitis B which showed up as me having had it at some point - not that I knew about it I hope you do experience doctors that listen to you and run every test available to try to figure out exactly what is happening to your body.

[Merelanew in reply to KLC18]

Thanks so much for sharing! Your symptoms sound very similar to mine. I feel like things are really progressing with my nerve pain. This all started because I noticed I was getting fevers all the time, massive headaches, then came raynauds and inability to control my body temperature. I'd get so mad at my husband because (he has raynauds too) and he'd touch bare skin and I'd instantly turn into a popsicle. I've had so much blood work done it's crazy but is there any blood test I could ask for that's linked to nerve vasculitus? Thanks so much for the responses I truly appreciate it as I'm feeling pretty lost right now.

[KLC18 in reply to Merelanew]

Its really hard with lots of "non specific" symptoms that could be caused by many diseases, its why it took so long for me to get a diagnosis with a misdiagnosis of lupus along the way. I am no expert on blood tests etc - for me it was the positive skin biopsies (3mm deep and 8mm deep) which showed nerve damage as well as vasculitis. I am now on 40mg prednisone as day, (from 60) tapering slowly by 5mg a month as well as another immune suppressant, mycophenolate mofetil, which I've only just started so don't know what its going to do yet. The steroids, despite the side effects have helped so much. In particular its subsidence of headaches, the awful pressure in my head, the migraines and blurred vision that has made such a difference. I couldn't think straight! Always happy to email or chat here.