Can anyone give me some advice about preparing for an appointment with a Neurology consultant.
Will he be more interested in my very bad short term memory loss, lack of concentration, depression and mourning the person I used to be before being diagnosed with SLE, RA and hypothyroidism. Struggling to read books as I can't remember characters or the plot line, sometimes even what the book is about.
Or will he be more interested in my more physical problems such as feeling as if I have ants crawling on my skin even though nothing there, my restless legs at night, oversensitive skin where I have to wear my pyjamas inside out because I can't bear the seams touching me. No creases on bottom sheet! Sudden limb jerks and shaking hands when extremely tired.
I have awful insomnia like many of us but don't know if that would come under his remit or not.
Am waiting for appointments with neurologist, cardiologist, dermatologist and pulmonologist before returning to see my rheumatogist as I'm so breathless all the time, she wants to make sure their are no hidden problems before restarting me on a treatment for lupus. Was on methotrexate then sulphasalazine which exacerbated my symptoms, so without any treatment all my fatigue and pain is at it's worst.
Any suggestions or advice would be really appreciated.
SLEepyhead.πππ
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SLEepyhead123
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Oh dear, this sounds like you have fatigue well and truly. No wonder with the multitude of possible conditions. As long as you have a list of all the questions you want to ask, you have the most important covered. Make sure you get answers, don't let them fob you off. All the best.
Why were you refered to a neurologist? As that will give you an idea of what they will be expecting, and knowing that will help make sure no miscommunication.
It makes sense to me to try to list your symptoms in groups, and let the specialist decide what's relevant and what isn't.
Brain issues - memory loss, problems with words, cognitive issues (like not being able to add up), vision problems
Physical symptoms, like the ants, sensitivity, balance, twitches and tremors,
Pain, headaches, numbness, weakness in arms and legs etc
And for each just think about whether it is constant, or whether it's at particular moments in the day. And sleep is part of their area.
Write everything down in bullet form even family history connections.it's hard to try and remember things then it's annoying when you forget.ask for a clinic letter sent to you so you don't have to remember everything they say.
Prepare yourself too for asking personal questions and answers.I have seen rheumatologists too but neurologists I have seen I thought they were awful.One said couldn't find anything wrong whereas another said it was all due to my mother dieing. Next rheumatologist was amazing and put all my faith back in the professionals.
I took a friend who is an excellent note-taker and almost word-for-word, wrote down everything the specialist said. I recommend it because you they tell you so much and it is impossible to remember everything.
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