New here!: Hello everyone I’m new to the site, have... - LUPUS UK


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New here!


Hello everyone

I’m new to the site, have already responded to a couple of posts, but forgot to do the intro bit! That’s typical of me and my perma-brainfog!

Recently diagnosed with UCTD after being symptomatic for 25 years, MS was the initial thinking by doctors. Episodes of neuropathic symptoms such as electric shock pains in my limbs, fatigue, low cognitive skills, low mood, memory loss, lack of balance etc were spaced several years apart. The more severe ones were reported to GP who put them down to “overdoing it”, “stress”, “menopause” etc. I just got on with it.

A blow to the back of the head last summer precipitated a very acute neuropathic episode, which did not abate for 5 months. Sporadic episodes continue flare to present day. Concussion aside, a diverse range of symptoms saw me referred to ENT, Neurosurgery, Neurology and Neuropsychology. It was the Neurologist who suggested an ANA blood test due to my history. Bingo! Positive ANA saw me referred to Rheumatology and a diagnosis. Treatment plan in place and I’m starting to feel better! Lifestyle and diet management have made a big difference and I can manage myself much better knowing now what the problem is! I really don’t feel guilty anymore when I sleep in the day!

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PS - sorry forgot to mention (thanks brain fog) that during my referral journey, it was hard to keep up the momentum and even though deep down I knew that something was wrong, I even began to doubt myself at times. If anyone else has an inkling of doubt about themselves or gets the “raised eyebrow” treatment from the medical profession, keep going! Don’t be afraid to question things, don’t be afraid to push for referrals and don’t worry if you think you are becoming a nuisance! Also ask your GP for blood work to rule things out like B12, Thyroid, anaemia, and to see about ANA, kidney function etc. A lot can be revealed from blood tests. Keep plodding on, I only wish I had kicked up a fuss years earlier. Thanks to head injury, I finally got there!

Also forgot to mention that blood results returned a low-ish kidney filtration rate (60). Rheumy not sure if due to genes as renal failure runs in the family (and so does auto immune disease 😖)or whether disease is having a go at the kidneys. Have more blood tests at end of July to see which way this is going! Thanks for reading! I am surprised at how cathartic this is, writing it all down!

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