I have symptoms but I don't know if I really have... - LUPUS UK

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I have symptoms but I don't know if I really have it or being paranoid

Mona833 profile image
11 Replies

•Face and skin problems:

oRed irritated patches on nose, cheeks and forehead.

oDry, flaky itchy scalp

oLittle clear-fluid filled bubbles under skin on fingers

•Multiple joint pain:

oOn and off knees, shoulders, hips, and hands

•Digestive system irregularities :

oFeeling the need to go when you don’t have to

•Cold hands and feet:

oHand and feet can’t retain heat in cold weather

•Dry eyes

•Persistent phlegmy cough lasting two months so far

•Persisting and recurring headaches and migraines.

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Mona833 profile image
Mona833
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11 Replies
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Mona833 ,

Have you discussed these symptoms with your doctor? Have they requested any tests or a referral for investigations?

Mona833 profile image
Mona833 in reply to Paul_Howard

they did ANA, HBA1C, FBC, ESR, RHEUMATOID FACTOR, C REACTIVE PROTIEN, liver and kidney functions. Everything was normal

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Mona833

Have they given any suggestion about what they think the cause may be? Are they doing any further tests or referring you to a specialist for further investigations?

Mona833 profile image
Mona833 in reply to Paul_Howard

They haven't. They seem to be happy with all the lab results and say everything is normal and nothing is wrong with me. Which is the most irritating part. I feel like I've reached a dead end

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Mona833

Was it your GP who did the investigations? Have you been seen by a rheumatologist? I would request a referral to a rheumatologist for further investigations into the cause of your symptoms. If your GP will not refer you then you may wish to change to a different one - you can find information about doing that towards the end of our article here lupusuk.org.uk/getting-the-...

tigerlily72 profile image
tigerlily72

No, you're not being paranoid. You just want answers and to know what's wrong. I've very recently been tested for lupus and rheumatoid arthritis - tests were normal. I have an MRI scan pending which the neurologist said was highly likely to be normal too. They are likely to diagnose me with fibromyalgia and CFS now but I have to wait.

Have you had a blood test to check your thyroid?

Mona833 profile image
Mona833 in reply to tigerlily72

Yes, but those were notmal as well

tigerlily72 profile image
tigerlily72 in reply to Mona833

Don't give up, keep "pushing" the Dr for answers. It's what I've had to do since the beginning of the year. Maybe keep a record of symptoms, any new symptoms, how you're feeling. My pain levels have got so bad I've had to see a different Dr today (my registered GP is on holiday). Sometimes, seeing another Dr may mean they pick up on something your usual Dr has missed.

Nikki246 profile image
Nikki246

It took me 7.5 years to get diagnosed. First doctor I saw basically told me I was a hypochondriac. Then when I moved and changed doctors 4 years ago. It took me a while to go to the new doctor but when I did she was amazing. I was referred to a rheumatologist almost straight away. He turned out be useless so same Dr reffered me to Guy's hospital. I have had so much help and the medication is helping. I had a total full on physical day yesterday with my horse. Left the house at 8.30 am and got home at 8.30pm. I'm tired but I'm able to function today as before it would have taken days if not a week to get over it.

I hope you het some answers soon. Don't give up.x

tigerlily72 profile image
tigerlily72 in reply to Nikki246

That's such a long time to be suffering Nikki246! Our previous Dr was useless, mostly uninterested and dismissive. He would often tell my husband his symptoms were due to his age - at the time he was in his late forties! In the end we never went to see him unless we were desperate and thought we might need a prescription to treat something. Thankfully he retired (although I'm pretty sure he was nowhere near retirement age).

We then got a female Dr who is the total opposite and within months of seeing her my husband was diagnosed with arthritis in his knees, hypothyroidism and type 2 diabetes! He was given meds straightaway to treat the arthritis and hypothyroidism. When my Father-in-Law passed away and my Mother-in-Law had to go into a home she would often ask me during my appointments how she was doing (she was their Dr too).

I'm glad that your medication is helping and you've been able to do the things you enjoy as it makes such a big difference. x

Mona833 profile image
Mona833

New update. I've been advised by another gp to go in for a full body mri. Is this something I should definitely go for? What might they see in the scan?

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