LUPUS UK
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Update following my rheumatology app.

Hello everyone I've now had my rheumatologist app so this is the.update for anyone that's interested. He said my ana was 1:80 speckled. He has acknowledged my eyebrow hairloss and ankle swelling but has advised that he is not convinced it's lupus. He will check a more detailed ENA screen and has referred me to dermatology and for an mri scan of my ankle.

The 'inner tremor' I was experiencing has subsided since my GP prescribed anti depressants for anxiety. I had feared it was CNS lupus.

So the rheumatologist and GP are not convinced it's lupus but I'm still not convinced that it's not lupus . I have a tingling rash that looks and feels like sunburn over my cheeks and nose , eyebrowloss, swellings that come and go over ankles and my mother died at 64 with kidney failure , she also had raynauds,became Ill in the sun and suffered from extreme fatigue . Lupus was never mentioned by doctors but I now believe that this is what she had.

I do want to add though that I went to Crete on holiday and did mistakenly get a small amount of sunburn. I felt absolutely fine on holiday and since I came back 2 weeks ago.

Thanks to anyone taking the time to read this and any thoughts would be much appreciated.

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Hi aries67,

I'm glad to hear that you are still being referred for further investigations to find the cause(s) of your symptoms. Keep us updated with how they go.

If you are not satisfied with the diagnosis (of lack thereof) after these investigations then you could ask your GP to refer you to a rheumatologist with a specialist interest in lupus for a second opinion.

If you'd like to let me know what area you live in, I could provide you with information about any lupus specialists we know nearby?

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I still have no idea what is exactly wrong with me. I have Raynaud,s and

Glaucoma last 30 years. Since last year in May I became ill. Since then I have

Been diagnosed with fibromyalgia, which I know I DO NOT HAVE. THEN

OSTEO ARTHRITIS. Then this year Erythromalalgia. Now been in hospital

x 2 with high blood pressure + high pulse rate. Then back to hospital with

Stomach bleed. Next week for radiography scan. Oh yes I nearly forgot

Spots on face between my checked next week. Is there any hope any

Where. Blood tests 1000 no result just fine. I disrepair. After next week

I never want to see a hospital or doctor again. Sorry

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Dorothee,

I thought I had Erythromelalgia or vonwillebrand disease because of symptoms, it turned out my meds were causing the bruising and internal bleeding. Was given Ristocetin test etc. Found out blood pressure meds can also cause similar symptoms in some prone individuals.Did my HW and found out 276 meds can cause similar problems. If interested

Go to FDA site for this info. Also, have Osteo arthritis makes me wonder if you were taking Ibuprofen the Nsaids too!

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Thank you for your reply. I have only been on sleeping meds Sanofi make for 20 years. Try to reduce intake slowly. Illnesses only arrived last year in May and increased by 6 . Recently given 5 new tablets . Blood pressure down pulse down a bit bleeding stomach tablet taken no more bleeding,touch wood, Statins not yet taken to many side effects with muscles etc. Blood thinning tablets now changed from aspirin to different blood thinners . Some things are working. I had a Tia to begin with 2 or 3 weeks ago. But I am feeling better today just do not like meds in general. I will let you know about heart scan next week. From the bottom of my heart thank you.

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Hope you feel better soon!

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Sorry I am not taken anything of the. Meds you mentioned.

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Hi Dorothee,

I'm sorry to hear that you are struggling to get a satisfactory diagnosis. Have you asked for a referral for another opinion? Perhaps ask to be referred to a rheumatologist with a specialist interest in lupus? If you let me know what area you live in I can let you know about any we know nearby.

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Thank you for your help. I have been to hospital firstly Derma doctor, it said so on her name tag, she said oh let me just get a magnifying mirror, and of course I am thinking YOU SHOULD HAVE HAD ONE ON your desk being a dermatologist doctor. Never mind she told me they were warts, don't belie 've it, and went on to say you could have them for years and we cannot do anything for you. So I just looked at her and said freezing them is that not an option. Oh yes she said. I just get it. All frozen off. Not really she frozen of what she called warts which at first a big oblong lump under my skin with sorry pus. Do not know another word. My own doctor had told me she would take blood sample from said spots. Any way I am moaning again but bear with me. When I came out of hospital and took MEDS given my whole body was increasing in spots face too. My test of my heart was absolutely FINE that word is getting on my nerves. 10000 blood test taken all FINE. Results at my own doctor on 3rd July and they are of course FINE. I am now it is not winter with Windows open now summer time swollen ankles swollen upper arms and upper legs funny oval swelling over my body . Never mind. Nothing wrong with me.

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Hello Paul

Thank you. I live in East Lothian Scotland.

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Hi aries67,

Dr Nicole Amft is a lupus specialist at Western General Hospital in Edinburgh. Perhaps ask for a referral to see her?

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Thanks so much for this. I assumed that people being investigated for lupus would be seen by a doctor experienced with this type of illness . Very niave of me lol .

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I asked my rheumatologist about eyebrow hair loss and she said that was classic hypothyroid (which I have had since my twenties).

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Hi thanks for your reply:)

I've had my thyroid checked twice and tests came back normal.

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Dorothee, originally I meant to say that many or almost all high blood pressure meds also can lead to blood related disorders such as internal bleeding etc. Not telling you not to take meds, but for our own sake, is always good to check all side effects.

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