Neurological symptoms, numbness in hands and lips

[Subtropical island]

Thanks for looking into this @Diwi9 ! I have numbness and tingling all the time when I'm crashing and recovering. I have mentioned them to my doctor and becasue there was no reaction I assumed the blood tests ruled out anything but ME/CFS.
I really don't know if it's even relevant but I have had a missing spinus process (the bump on your vertebra) just under my bra strap all my life but in the past few months it's been hurting there a lot. I've been waking up curled up and have to force my shoulders from my ears so I assumed it was posture. I've had pain under my sternum for a long time too but the gastroscopy was clear save a polyp and my inability to stop coughing at one point during the procedure.
Very interesting that the thoracic back and tingling might be related. Yes, also the little finger and ring finger but also both feet and legs.
No energy just now but will file away as something to save up energy to look into.
Thanks!

 

[Diwi9]

Thanks for looking into this @Diwi9 ! I have numbness and tingling all the time when I'm crashing and recovering. I have mentioned them to my doctor and becasue there was no reaction I assumed the blood tests ruled out anything but ME/CFS.
I really don't know if it's even relevant but I have had a missing spinus process (the bump on your vertebra) just under my bra strap all my life but in the past few months it's been hurting there a lot. I've been waking up curled up and have to force my shoulders from my ears so I assumed it was posture. I've had pain under my sternum for a long time too but the gastroscopy was clear save a polyp and my inability to stop coughing at one point.
Very interesting that the thoracic back and tingling might be related. Yes, also the little finger and ring finger but also both feet and legs.
No energy just now but will file away as something to save up energy to look into.
Thanks!

I think that there is an inflammatory process at play, my doctor agreed (wow!). Why else would the symptoms exacerbate during flares and during the early morning (when I feel the worst)? No one really understands what is happening with us. yet I got MRI's and am thankful that I do not have lesions, which was my main concern. They do not explain the thoracic pain and muscle spasms along my spine, but perhaps it is all related to pinched nerves?Interesting that you also have symptoms along your ulnar nerve and focussed pain at the bra strap area...ditto here!

 

[arewenearlythereyet]

I have tingling and constantly numb hands and feet. After a neurologist assessment this showed that it extends throughout the fingers and toes and to the palms and soles. In practical terms I struggle to turn the pages of a book and have to concentrate when holding things to make sure I don't drop them, especially slippery things like glass or some plastic packets.

I also had an MRI and nerve conductivity tests looking for MS. All normal. Upon going back through my testing records I found that my B12 and folate were very low, but the GP didn't recognise them as so and didn't link the numbness to the B12/Folate since my intrinsic factor result was negative.

However I have subsequently found that the intrinsic factor test is only 50% accurate and so if you have lowish results and neurological,symptoms such as numb extremities and cognitive problems, they should be giving you b12 injections.

It might be worth looking at the actual test results if you haven't already just to rule this out.

 

[Diwi9]

However I have subsequently found that the intrinsic factor test is only 50% accurate and so if you have lowish results and neurological,symptoms such as numb extremities and cognitive problems, they should be giving you b12 injections.

It might be worth looking at the actual test results if you haven't already just to rule this out.

Thank you for the information. I'm lucky to have a specialist who has prescribed B12 injections and methyl folate. I inject 5000mcg of B12 every three days, and take 5mg of methylfolate everyday. So far, so good.

 

[Subtropical island]

. Upon going back through my testing records I found that my B12 and folate were very low, but the GP didn't recognise them as so

Sorry, brain not making sense of this: when you say b12 was low but the GP didn't recognise it, does that mean they were outside the lab result range for normal and he didn't think it important? or that they were within them but only just?
I ask because when I was getting hyperparathyroidism my calcium rose gradually and looking back I could have spotted the trend before it left the 'normal' range and saved myself a year or two of hypercalcemia (in the blood, my bones were starved and my brain and organs were flooded), not normally something a 30-something gets.
Thus I think sometimes the trend and what's normal for you on a given test are more significant than generalisations and I wonder if that's what you're saying for b12?