LUPUS UK
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Health changes over last 2 years come and go. Recently more regular

I wonder if there is anyone who has experienced the same symtoms and have not had a positive diagnoses.

I had a suspected TIA in may 2015 where the left side from head all way down went numb weird sensation. This lasted seconds afterwards I felt a little nausea and starting shaking and very cold. Since this episode my health has not been the same. Ive had a frozen sholder, double vision. I have travelling from my neck in to top of arms elbows and in to my hands. My fingers tingle and go numb. Im really tired on a morning when washing my muscles are so weak and pai ful it has me exhausted. My stomachs swells as though im pregnant and have just had an endoscopy which showed i have a Hiatus Hernia and chronic Gastritis and IBS. I get light headed and dizzy spells regularly. Restless arms and legs suffer mouth ulcer. Tightness in my chest quite often., daily. I have just seen a neurologist who says it's not my brain or spine as I have had a mri and only scattering of white matter showed on the brain mri. I have test on heart and nothing only mild Atherosclerosis in my left carotid artery. He has advised me to go see a rheumatologist as he thinks I may have fibromyalgia, raynauds. I also get a red rash over nose and cheeks but never happens when I see a doctor. I eould love to hear ftom anyone with similar experience Thank you

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Hi Lynn-Elea,

I'm sorry to hear that you have been experiencing these symptoms for so long and are still struggling to get a diagnosis. I definitely think that your neurologist was right to recommend that you see a rheumatologist. Have you had the referral yet? Do you know whether you have had any blood tests for autoimmune diseases, such as an antinuclear antibody (ANA) test?

It is worth keeping a record of any of your symptoms, along with photos, in preparation for your consultation. We have an article about getting the most from medical appointments which may be helpful for you - lupusuk.org.uk/getting-the-...

If you need more information about how lupus is diagnosed and some advice, another of our blog articles may be worth a read - lupusuk.org.uk/getting-diag...

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Thank you for your reply Paul.

I seen theneurologist on 19th Jan he said he would write back to my doctor and advise for me to see a rheumatologist. As yet I've not heard from my doctor.

Neurologist said i had blood test for lupus early 2016 which were clear he felt there was no need to repeat. He did arrange for blood test for rheumatoid arthritis as I've not had that test done.

I am keeping a diary now and have took some photos when my face flares up.

Thank you for the links I will have a look.

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Yes Lynn-Elea I have had 3 tia`s about 15 years ago . I had already been diagnosed with lupus years before . Take care of yourself and trust your instincts. Ask questions. If a doctor does not want to answer your questions, than get another doctor.My rheumatologist really helped me and had remained stable with her for years. The hiatus hernia and gastritis I had , when 19 years old and was put on meds. for that, which really helped. I hope you are going to a gastro. doctor for that. Rheumatologist put me on plaquenil and have not had problems with it. That was around 30 years ago. Problems now are different and many, but I am older 68. Try to be positive. Take care. Follow up with appointments and God bless you. Nanno

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