Hello all: Just thought I would introduce myself as... - LUPUS UK

LUPUS UK

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Hello all

MPoppins profile image
6 Replies

Just thought I would introduce myself as been looking at your forum for some time, and finding it helpful.

I've not been diagnosed with anything but seem to have a fair few problems that seem to tie into auto immune issues. Hypothroidism for many years and then started with joint problems (swelling, pain, stiffness, reduction of movement), fatigue (sometimes debilitating), all of which comes and goes and dependant on the weather - damp, rainy weather worse. Then got a nice scabby scalp, just on the top of my head and seemed to come on after being outside on a sunny day in May, but isnt better and now using betacap as GP seems to be taking me more seriously but struggle to use it every two days and end up resorting to every day, as very sore and itchy, hair not growing back on scarred areas. Also got dry eyes (Optician found this) and dry mouth (Dentist found this and insisted on me making an appointment with GP as thought it was Sjogrens). GP hasnt said whether I've got Sjogrens or not but has given me Biotene - amazing, and eye gel which was amazing but only lasts 2 hours max now. A worrying addition today is that I've got an odd blob of jelly like substance on one of my eyes, which is not removable - I've tried. Migraines are a new addition in my life too. GP is generally saying to wait and watch but that is so difficult when you feel so awful but completely aware that all of the above may just well be getting older - want to turn the clock back if it is ;-)

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MPoppins
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6 Replies
Horsewhisper profile image
Horsewhisper

Hi there MPoppins, so sorry to hear that you have been struggling with a range of health issues, it can all be rather worrying. Glad you have posted on this forum, there is a lot of advice and reassurance available from people here, along with a few laughs 😊. It seems that various health professionals have picked up on a few things that may need further investigation and it might be an idea to push these a bit further with your GP? I realise that we can sometimes develop new health problems with the ageing process, but do trust your instincts - if you are not feeling well then you are not well! Perhaps ask your GP to do some blood tests, particularly ANA and push for a referral to Rheumatology? The sooner you start the ball rolling the sooner you’ll get some answers and a route to treatment. Good luck with everything and I hope you start to feel a bit better soon xx

Bebe76 profile image
Bebe76

Good advice from Horsewhisper - the next step would be blood tests and referral to a rheumatologist. Your doctor is only treating the symptoms not the cause.

MPoppins profile image
MPoppins

Thank you both. GP is saying watch and wait at the moment, bloods have been off for over a year (WBC low, Ferritin almost none existant, HB low, CRP raised). Going for an MRI knee next week as knee and thigh swollen and thigh especially becoming more and more painful, so hoping that helps. x

KayHimm profile image
KayHimm in reply to MPoppins

Are you sure he has not done an ANA? I understand the “watch and wait” approach but I thought that was done after initial labs are inconclusive. Usually even a mention by a doctor of “possible autoimmune” issues prompts certain tests. He should be able to explain his reasoning to you. Let us know what he says.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi MPoppins ,

Welcome to the LUPUS UK Community Forum. I am glad to hear that you have found it helpful reading some of the other posts.

As others have suggested, if your GP has not yet done any blood tests for possible autoimmune conditions then this would be an excellent next step, along with a referral to a rheumatologist for more specialist investigations. An ANA blood test and ENA blood panel would be helpful.

For more information about the blood tests used in the diagnosis of lupus, please take a look at our factsheet here - lupusuk.org.uk/wp-content/u...

MPoppins profile image
MPoppins in reply to Paul_Howard

Thank you, busy plucking up enough courage to see GP ;-) but will do soon

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