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.)

These symptoms are all those exhibited with a low level of Vit B12 and issue with Vit B12 absorption is linked to coeliac disease, so I would hope that your GP has tested you for this already?

I have already been tested for B12 deficiency. My folate was slightly low and I've been on folic acid, but it's not improved symptoms (and some are still getting worse.)

It is awful how any mental health condition seems to mean that physical symptoms are minimised and ignored by HCPs.
I hope you get all the tests and a diagnosis asap.

It is perfectly possible to have more than one thing wrong at the same time.

I’ve done extensive googling on MS as had classic symptoms and was tested last year. I don’t have it (clear mri’s). MS is not the first thing I thought of tbh. Fibromyalgia?

I think they are ruling out neuro things as I have blank spots in my vision too and was having six monthly screenings due to other visual abnormalities. It could possibly be Fibro, I'll take a look at the symptoms. My GP thinks it's neuro or ME though, but from my understanding there's a lot of overlap with ME and Fibro.

What symptoms did you have Marscapone? Did you get a diagnosis of something when they ruled out MS?

B12 leapt out at me too. When you say you've been tested, do you have the actual number of your results or were you just told you were within range? Slurred speech and losing words is a really characteristic sign of lack of B12, not to mention all your other symptoms.
When I was discovered to be low in B12, the first test I had was for coeliac disease as it stops proper absorption and they often go hand in hand. (I don't have coeliac disease, I have pernicious anaemia).

I was told my B12 was fine (literally like that). My folate is slightly low (that's 2.7, so literally only slightly) and I was put on tablets for that, so I'm guessing if my B12 was even only slightly low they'd have done the same as I already have a coeliac diagnosis.

To be honest, I thought B12 too until my tests were fine.

Interesting op - I’ve had similar symptoms and had an urgent neurological appointment, with MS being suggested.

After bloods, MRI and nerve conduction test, turns out there’s nothing wrong with me. Apparently they’re common symptoms in middle age and Consultant told me that in about 50% of cases they don’t find anything wrong.

Hope this reassures you a bit, I know it’s a worry. Now I just have the pins & needles to live with.

Is there any way you can find out your actual level from the surgery? I'm assuming if you've already looked into it that you know B12 deficiency is notoriously under-diagnosed and the levels in this country are set very low. They also vary widely depending on where you live - anywhere from 120 - 200 can be set as the lower limit.

Are you sleeping well? It could be just tiredness and anxiety

My aunt has coeliac disease. It was diagnosed from her her neuro symptoms. Weakness, blurred vision, trouble walking, fatigue. Etc.

inn it's definitely not anxiety. I am under a psych for my ADHD and when a GP dismissed it as that she was really pissed off. I do have higher anxiety than a general person, but it's not high compared to the autistic population. I thought it could be tiredness related as my eldest son doesn't sleep well (he's on melatonin), but the symptoms are such that it's not being put down to that (yet ;) )

Strax I will ask for my level when I'm seen on Tuesday. I know it's under diagnosed so it's worth checking out the numbers.

Fight I'm not middle aged (yet) but it's comforting to know you had similar symptoms and it wasn't MS. Realistically I know it's not, but I should not be having the physical difficulties I'm having at my age (I'm 32.)

It doesn't help that I haven't listed all of my symptoms as I was after a bit of hand holding rather than diagnosis guesses. I've been falling up the stairs because I can't lift my leg high enough, I've been dropping things like empty plastic cups because my hand just stops gripping, visual blank and black spots etc too. I think that's why the GP is ruling out neuro issues then is looking at ME/CFS.

Yeah, Brigits, I asked if it could be down to my Coeliac, but as I'm not having severe gastro issues it's (apparently) unlikely.

My aunt didn't really have any serious gastro problems- she was very surprised when coeliac was diagnosed.

I've already got a diagnosis :)

Hi op, has an mri scan been mentioned as part of the Neuro exam? This would pick up signs of ms in the first instance. I was diagnosed with ms 20 years ago and the mri was the first stage.

I sympathise, a couple of years ago I was referred to urgent neuro assessment with fairly similar symptoms.

The consultant made it very obvious that he was worried about MS based on my symptoms, demographic and the fact that I tested positive to some of his reflex tests and I completely freaked out and drove myself sick with worry. It took 8 weeks to get the MRI which were some of the longest in my life, and then another 8 weeks to get the results.

As it happens, the MRI was clear, the symptoms gradually subsided and 6 months later I was discharged from neuro with them saying it was likely some weird virus. That was 3 years ago now and no recurrences, but I remember how horrribly scared I was .

OP you do need to look more into B12 deficiency. If you only had the standard test from your go it might not have picked up a problem. That's because thst test looks at your overall B12 levels in your blood.

The problem with coeliac disease is not the full amount of b12 in your blood but thst it interferes with absorption. There are specific tests that will test the 'active level of b12 and thst will give a better indication.

Unfortunately many GPs know nothing about this not what is really an acceptable level anyway so I certainly wouldn't trust the 'your results are fine' considering your symptoms.

If you Google b12 testing and read the information o the pernicious anaemia webpage you will find a lot of info to thst regards.

Are you under the care of a specialist gastro for your coeliac disease? They should know about bit b12 absorption.

I would bet money on it being B12d too. I was told mine was 'fine' for 6 years before I finally got treated by a locum and by then I was very very ill. You have classic symptoms of it, and it commonly causes mental illness too.

Lab ranges are too low, even the ones with higher ranges only go up to about 190, whereas the BCSH/NICE guidelines state that symptomatic people with a level below 200 should be treated. So it is definitely worth while finding out your actual level (and the lab range used) and go from there.

Also, bear in mind that result will be void if you have taken any supplements with B12 within the past few months... oral supplements will raise your blood result level, but you won't have absorbed any of it due to being Coeliac

And just to add... many doctors think B12d is only serious if you are anaemic, and it is actually listed in the BNF as B12 Deficiency Anaemia. This isn't true, and if they read through the BNF guidelines, it does state that anaemia is not always present (in fact, it can be one of the very last signs to appear)

Thank you everyone.

I'll ask for the numbers re: B12.

Blue I think the decision is going to be made on Tuesday. This post was a place for me to do my irrational worry because it'll probably be fine.

Imsorry I'd be happy for it to be a weird virus that goes away.

I feel really unwell today, like I'm walking on a sprung gym floor. I checked my resting heart rate several times as it felt too fast and it was around 140. That can tie in with B12, so I'll ask them to check it out again.

swing in my area they discharge once your symptoms are under control post diagnosis. I asked for a re-referral but it got rejected. It's interesting what you say about the active B12 though, so I'll definitely bring it up at my appointment.

If you don't get anywhere, you can have a private B12 blood test done via a fingerprick kit (someone like medichecks or thriva) and then you can have exactly what you want tested.

Your symptoms really do sound like the ones I was having before diagnosis. I didn't even realise I was having half of them until I improved, it's so insidious.