Waiting for a neuro exam

[HugAndRoll]

I've had quite a lot of symptoms for over a year which have progressively got worse over the past few months. Unfortunately, as I have significant mental health history and already have autism, ADHD and coeliac diagnoses, I haven't been taken seriously. Until today.

I saw a new GP at my practice who has stated unequivocally that my symptoms need to be taken seriously. She's booked me in for an urgent neuro exam next week, and has also said if that test is fine I'm looking at a likely ME/CFS diagnosis.

While I'm glad I'm being taken seriously, it's taken me by surprise that it could be something chronic. I was half expecting them to say it's down to my coeliac (I asked a few times) or a long-lived viral thing that'll go away.

I was told to research ME, but not given any indication as to what neurological conditions she was thinking. As I'm obsessive over research, I've done some and my symptoms point to possible MS (though the sensible part of me knows this is unlikely.)

Basically I need to talk to people who don't actually know me so I can do all of the possible MS worrying without looking like too much of a dick when I'm told next week that (from that side) I'm fine. Is anyone willing to be a sounding board?

For clarity, my symptoms include (but are not restricted to):

• Pins and needles in feet and hands
• Loss of muscle strength
• Fatigue
• Generalised pain
• Increased coordination issues
• Memory loss
• Irritability
• Slurred speech when tired and losing words mid sentence

I'm worried because I'm the sole adult in the house and both my children are disabled. This information is quite revealing, so if you recognise me, please don't out me (and don't dismiss the worry post as it's here so I can hide the worry in real life.)

Thanks, Strax :)

In an unexpected twist they are ruling out rheumatological reasons for my symptoms following my assessment. I had bloods yesterday and have a full spinal, hip and pelvic x-ray tomorrow.

If that's clear they may refer me to a neurologist. I did peek at my file (on screen) and saw my B12 level is 214. Is it worth pursuing that as it's classed as normal with them, but some of you said the UK is a bit rubbish at setting levels.

B12 at 214 is low, however they might argue not low enough. Still, you would expect them with your symptoms to agree to a loading number of injections.

I’m sorry I don’t have any sage advice, it sounds like it could be a few things. It’ll probably be fine and manageable, the important thing is you are getting it properly checked out. Just wanted to offer a hug it’s horrible waiting for tests etc.

Thank you. Swing I will ask the question but like you said, I'm probably not low enough.

Sorry im just joining your thread to watch with interest as i am experiencing almost identical symptoms and no one seems to know (or care) whats wrong

It all came to a head last week when i became unable to walk or move mynarms for a few days...im seeing a private doctor monday to get their initial thoughts....

I should prob say ive already been diagnosed with Me/cfs but im wondering if something else is going on

It's worth getting checked out.

I won't have the results from my x-rays for a few weeks so I guess everything is on hold until then. My proximal muscle weakness and dead limb feeling is getting worse, as is the feeling that I'm walking on a sprung floor so I'd like to know what's going on so I can sort it out.

Don't give up. The way to get what you want with clinicians is to be persuasive, informed, and polite.

My experience is that medics will listen if you have a rational conversation with them based on information you've gathered. In your case OP, with your diagnostic of Coeliac, your symptoms and your low b12 reading, your GP should have automatically put you on Vit B12 injections if they followed the guidance.

Do your research, a lot of info is available on the pernicious anaemia organisation website, including NHS recommendation on treatment.

I'll take a look. Thank you Swing.