How long to diagnose

Iv been unwell for the past 18 months. Started with haemoproteinuria then april last year had multiple pulmonary emboli.

I still keep getting episodes of superficial thrombophlebitis in my left forearm.

Iv become folate deficient and keep having episodes where i cannot pass much urine. Started on diuretics to get my kidneys going again. Nephrology think they may be missing nephrotic episodes but kidney function satisfactory.

Been referred to opthalmology for episodes of intermittent night blindness. And low vision. Awaiting results from optical coherence scan and just had electrodiagnostic testing photographs and a repeat eye scan. Get results in 2 weeks time.

Have recurrent chest infections, glands in left of neck persistently swollen and tender, pain in my hands feet and kidneys.

Having sweaty cold clammy episodes, shivers every now and then, sores in my hair. Im more often tachycardic and starting to get a bounding heartbeat.

Iv had hormonal tests all negative. Im Extremely fatigued all the time. Can sleep for 12 hours and feel exhausted all day. Im breathless on exertion,chesty every morning and cough up but clears as the day goes, i do have episodes of coughing up blood, blood on blowing my nose, sores in my nose are terrible only in right nostril.

my lung function is good. Iv been tested for TB and legionaires all negative. Respiratory consultant said my lungs are clear from his perspective the only other thing is a HD scan to see if i have bronchiectasis.

I get aching chest pain on a regular basis.

My GP keeps going down the lupus / vasculitis root. All coming back normal but recently had raised PCR.

My IGA is raised persistently.

Iv not been able to get lupus coag screen due to being on warfarin but haematology arranging this and thrombophillia screen.

Iv now had the throbophlia screen and some element of it has come back slightly abnormal, but they wont tell me what, my appointment was cancelled that was pending (july) and im having a repeat of the tests mid sept. The only thing i can think is that the lupus anticoags is the test thats abnormal due to leaving it so long before testing me again. ( need 2 consecutive results 12 weeks apart)

I have alao got appointment with immunology this month that i have waited for for months.

Does any of this sound like anyone with lupus or vasculitis. Im at the end of my tether and its now affecting my mood. I feel like I'm going mad and wasting resources

Any help appreciated x

11 Replies

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  • Howsaboutit, it all sounds dreadful. Have you been tested for GPA ( wegeners ), it's a rare type of vasculitis affecting the sinuses, lungs and kidneys ( amongst other organs). It usually shows up in an ANCA blood test, although not always.

    If you go to the Vasculitis UK website they have a very good vasculitis Route map which gives an overview of all the different types. They also have an excellent helpline, the number is 0300 365 0075. I would definitely give them a call, the gentleman who runs it is very experienced in all types of vasculitis and is in touch with all the UK experts.

    It may be that you need a referral to a multi disciplinary vasculitis clinic for it to be truly ruled in or out. It is such a rare disease that very few clinicians are truly expert. Please give them a call and let me know how you get on.

    Best wishes

    Keyes

  • Hi Keyes and thank you for the advice. I will check out the website. I have has ANCA test a few times and all negative.

    Iv also Seen endocrinology, gynaecology, urology, nephrology, rheumatology, respiratory physicians.

    Gyneacology - have yearly smear for 9 years due to cin III cells removed after abnormal smear. All clear for past 5 years. Also got Ovarian cysts. Referred to endocrinology as gynae consultant questioned ?? excess cortisol due to swelling of the body and excessive fluid.

    Urology - has cystoscopy told all clear but have uterine fibroids.

    Nephrology - bp fine, pcr was 8mg/mmol retested few months later now 23mg/mmol. Nephrology dont want any involvement unless my pcr is greater than 50mg/mmol. Iv also been tested for fabry disease which was negative. The only other test that came back was polyclonal elevation of IgA and IgM, abd heamaturia.

    Had ultrasound abdo pelvis kidneys, showed simple adnexal cyst and minor sigmoid diverticulosis kidneys fine.

    Endocrinology - thyroid function normal, fasting glucose was 6.5 but have since been within normal acceptable range. Didnt fedl the need to test cortisol levels.

    Small increase in one of my liver function tests ALT 48IU/L ( normal range 0-33) told just from being overweight.

    Rheumatology - was very rude told nothing wrong with me. When i asked for any other explaination why i was getting pain in my fingers and toes . He said " probably fybromyalgia " basically i felt fobbed off. I have no diagnosis if fybro.

    Respiratory physicians - was tested for TB and legionaires due to recurrent chest infections, also multiple pulmonary emboli in both lungs.

    I'm under the care of opthalmology, haemotology, and awaiting immunology.

    Opthalmology - discomfort in right eye and low night vision

    Back for results of electrodiagnostic tests scan and photos on 25th sept

    Haematology - for multiple clots both lungs. thrombophillia getting repeated on 17th sept then back to see haematologist on 1st oct.

    Immunology - 19th sept seeing immunology.

    Im hoping that a diagnosis is

    imminent .

    Im just exhausted.

  • I am not surprised you are exhausted. ANCA blood tests can be negative in 40% of people with limited disease. Have you ever had your nose, lungs or kidney's biopsied?

    Where are you being treated? Do you feel that all your specialists are talking to each other or are they all looking at their particular body part and not considering your symptoms as a whole?

    I really would give John a Mills at VUK a call, it can't make anything worse!

    I totally sympathise with your situation as I am going through similar myself, albeit with different symptoms. I am attending the Multi disciplinary Vasculitis and Lupus Clinic at Addenbrookes next week, where hopefully, after 2 years, I will manage to receive a diagnosis and effective treatment.

    Good luck and don't give up.

    Keyes

  • Im just getting bounced back to my GP. He must think im absolutely crazy. Im starting to think im going crazy. He always says vasculitis symptoms when completing blood request forms etc.

    He has even tested me for myeloma and lymphoma.

    What upsets me most is iv resigned from work. I had a job i really enjoyed in a walk in centre. I was ill with chest infection after chest infection. I was picking up everything going. I was getting called to disciplinary

    due to time off. If i go anywhere where theres lots of people oartys weddings etc i start with a mild infection a few days after.

    The consultants clearly do not communicate with each other.

    Iv never been biopsied because of being in warfarin. Its strange that it is deemed important to be on warfarin and the haematologist has stopped and started it now 3 times. I am currently off warfarin but will be getting restarted im sure of it after the repeat thrombophillia screen next week.

    Im holding onto every little bit of hope that i will get a diagnosis as haematology have found a slight abnormality and doing repeat tests next week along with input from immunology. My fingers are firmly crossed.

  • Been back to hospital today and i was right to pin the abnormality to the lupus anticoags. Had about hslf dozen vials of blood taken. Results on 1st oct.

    Immunology friday. Im hoping there is light at the end of this tunnel.

  • Been to immunology. Said there is no concern from her perspective as all otherSpecialities have covered the tests she would do. She did request blood test for IgG and dipstick urine ( the usual +++ blood + protein) which was sent off. will write to me when results are back.

    She spoke about possible chronic fatigue due to all bloods coming back within reasonable range and to ask my gp to get support from this specialism.

    Im confused because im chesty all the time, had blood clots, keep having superficial thrombophlebitis, persistent blood/ protein in urine. i dont think thats consistent with CF.

  • Update from ophthalmology - results from electro diagnostic test were reported to be fine from ophthalmology perspective other than I have blepharitis, but not from a stroke one. I was very worried and then referred into the TIA clinic with a seen within 7 day referral. Had blood test ECG then seen by stroke consultant who asked me to stand up close my eyes listened to my neck with his stethoscope then said your not having TIA's. I asked what about the result that has indicated otherwise and he said " oh its irrelevant and its not even reported on by a Dr" the bloods hadn't even come back and he had discharged me and said they would be sent to my Gp when questioned.

    I have seen my Gp who is concerned as they have not written to him with the outcome of the stroke clinic appointment. My Gp told me that the electrodiagnostic test result indicates I am having losses of vision.

    My Gp also has re referred me back to respiratory due to constant pain in my right side, rib area. When last seen by respiratory physician he said next step would be a HD scan to rule out bronchiectasis. My Gp now wants me to have this.

    I am having an MRI scan of my pelvis on friday of this week due to right sided groin pain, hip pain leg pain, flank pain and that a cystoscopy I had for persistent blood and protein in urine showed uterine fibroids.

    I am now getting a painfully cold area on my outer forearm and numbness in my thumb and index finger, dry nose very dry mouth persistant sore in my hair, ears. My appetite is diminishing but I am looking more swollen.

    Its just a nightmare I wish would end.

  • My suffering continues. My eyes are dry and gritty all the time. I have lubricating eye drops. I am tired all the time.

    I am now having terrible aches pains in both my elbows left shoulder right hip left ankle right mid back.

    Been having physio along with naproxen which initially worked a treat. Then had a real bad time with joints. Told i have generalised tendonitis. Was put on prednisolone and responded really well. Had a reducing dose which has now stopped and within a few days the pains are starting up again.

    I most definatrly respond to anti inflammatories and steroids. i felt i had more energy. My temperature came down for the girst time in ages to 36.9.

    It is persistently 37.3 and above.

  • Joint pains got that bad I'm now back on prednisolone for 1 month, been told to titrate is as I see fit. I got the prescription at 4 yesterday took 7mg and was pain free by midnight. Iv taken 5mg today to see how I get on. Don't want to take more than needed as I know the side effects can be bad. I just wish there was an explanation for the symptoms. Still no diagnosis and its been going on a few years now. I am definitely responding to steroids. Anyone have any ideas what this could be or had a similar response to low dose steroids?

  • Taken off steroids and was in so much pain. Now back on a very small dose and titrating down every 2 weeks. Only on 4 mg .. Which is only just maintaining the symptoms, Now on 3 mg and i can already feel the pains.

    I desperatly need this rheumy appointment.

  • Forgot to mention, ongoing white cells slightly raised, but not significant enough to treat or cause concern along with low grade temp, also have blood and protein in urine. These are persistent symptoms

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