How to obtain a Vasculitis Diagnosis

[MaryMac2016]

Apologies, as this will be a long post...

I'm new here and just need some advice as to what to do next. Long story short - I had been checked by the Infectious Diseases department as both the GP and I thought I might have picked up a parasite infection from my many travels. Unfortunately, they didn't find what they were looking for, so I have been discharged from that Consultant and now I'm wondering what to do.

It all started last April when I began to feel unwell. I kept getting a swollen gland on my left side of neck, followed by a swollen gland in my left upper leg, near my groin area. My left jaw was aching a lot, but an x-ray at the dentist didn't conclude anything. My teeth started to decay after a healthy run. I lost a lot of weight in a short space of time. I couldn't stay awake during the day and went to my GP. Blood tests were normal except for B12 and Vit D. B12 was just bottom end of the range but Vit D was below range, so I was prescribed Vit D for 3 months. (I now buy both Vit D and B12 and I am happy with that.) My health got worse and my legs started to ache terribly at the top, followed by my upper arms. I had a visible pulsating vein in my chest, then in my leg and then I got dialating veins appearing in my wrist, arm, and leg, along with isolated swelling. I had constant tinnitus in my ear and oedema on my face and nose. I have had a pulsating feeling in my pelvis area and in my bowel area. A Colonoscopy showed only mild diverticulitis, but no evidence of anything else. At one point I felt something in my chest area, rush up towards my heart and I thought I was having a heart attack. I took myself to A&E and they ran an ECG but said that they couldn't find anything. I honestly thought I was going to die. I have also felt the pulsation in my temple area when I am trying to get to sleep. My eye sight deteriorated in a short space of time and I had difficulty with blurred vision. My prescription changed by a quarter in 2 months. I experienced a tremor in my left arm and I went back to my GP who sent me to the local hospital. The hospital discharged me the same day and the discharge note said "Anxiety" but they had suspected Guillain-Barré Syndrome from the Doctor's referral note. I have all my medical records, so I saw this info later.

At this point, I was referred to the Infectious Diseases Consultant who did CT scans of my body, No parasites were fond, but I have read a lot about this and I know it is sometimes very difficult to diagnose without definite evidence. This was between October and January.

I did 2 parasites​ cleanses myself and that helped a lot, however, my symptoms are now returning. I have (sorry) puss coming from my navel, which I am cleaning daily with salt water. My stomach is itchy and has a red rash on it. The sensation in my temple area returned last night and I have a wheeze that is not showing up on Xrays. My left gland is back up on my neck and leg and my upper arm is hurting once more.

From all my reading, I suspect that I have some kind of Vasculitis and I'm not sure how to approach the GP about this. They don't think parasites exist but were happy to refer me to a specialist who does. My biggest worry is my eye sight as I know Vasculitis affects this a lot. If I need treatment, I want to get a diagnosis as soon as possible, but who would do this and how long might it take? My GP is okay but doesn't know everything - he didn't know what was wrong with me and openly admitted that. I think he was relieved to refer me because he just kept saying "There is definitely something going on, but I don't know what it is".

For information - I am early 50's and Female and most definitely either in menopause or post menopause, but I haven't had any symptoms of this other than my periods stopping suddenly last April when I became unwell. Prior to this, I had one every month. My Mum has advanced Alzheimer's but we don't know if it's vascular.

Any help or advice is very much appreciated. Thank you for taking the time to read my post

[Hidden]

Hi,

If you phone or e mail the VUK helpline then we can talk over your symptoms and give you some information on what to do next. I am on the helpline this week and will be in for the rest of the day.

vasculitis.org.uk/helpline

Best wishes

Keyes

[MaryMac2016 in reply to Hidden]

Thank you for your valuable help

[Hidden in reply to MaryMac2016]

Anytime! 😀

[Suzywhizzo]

Hi Marymac, after reading ur post I can really relate to u. I am also in my early 50s and my symptoms also started last April and I am still waiting for a diagnosis. I have scleritis in both eyes and my eyesight is deteriating really quickly. The frustrating thing about my illness, which they think is some form of vAsculitis, is that they say to get diagnosed quickly, so u can get on medication. However that is impossible. My docs have no clue and if they don't think u need to b referred, then u can't get to c anyone. My bloods come bak ok, a little low in some, but they r not bothered. I too have raised temples, pain all down left side, by kidneys and left leg swells all the time.

There is a lovely lady on this sight called Lynn who is a helper and she will point u in the right direction. I am waiting to go to the behcets centre in Birmingham to b checked out there. Where do u live, it wld b good to chat to someone close by.

U will get some good advice from John mills who is chairman of the vAsculitis group. My sympathy goes out to u as my daily struggle seems very similar.

Take care and write bak whenever u want to.

Suzy

[MaryMac2016 in reply to Suzywhizzo]

If you send me a message, I will reply to you. Thank you for reaching out to share your story, which sounds very similar to mine

[Suzywhizzo in reply to MaryMac2016]

Hi I don't know how to send a personal message as I'm new to this as well

Thanks

Suzy

[Hidden in reply to Suzywhizzo]

Hi Suzy,

I you go to the top of the page where your name is and click on it a drop down box will appear. Click on messages and then you can send a private message ( PM ) to MaryMac2016 that only they will see.

I will send you a PM to see if you can pick it up.