One of the things noted in my emergency visit yesterday was hypereflexia, especially my legs.
Has anyone else had this?
My quick Google has said it can be B12 but also MS. If I’m on EOD injections, are hyper reflexes still likely? I’ve noticed the twitches in my legs get worse before an injection. Or could it be the low iron interfering with things? 🤷🏻♀️
I did have 'brisk' /hyper reflexes reported when I'd seen a neurologist a few .months in . At the time on EOD B12 injections. Only in my legs.
He wasn't that concerned.
I'd already had a brain CT and Brain MRI .
He commented on a 'heightened nervous system '
The only occasion reflexes were tested.
My daughter had the opposite
Lack of response to reflexes tests 😕
Thanks Nackapan, everyone’s so different!
Yesterday it felt like my nerves were so irritated and sensitive. The nurse said even when I was unconscious, I had twitching going on. Even a light touch on my legs made me jump, and my pain sensitivity was abnormal too - everything just felt so heightened.
I also had hyper reflexes when checked in hospital (3 months ago) before I had any B12 when first diagnosed with PA and AAG. I also had occasional pins and needles and balance issues and was romberg positive (that has improved).
At the time discharge notes said "# Paraesthesia's - If persistent ongoing, may need Neurology review +/- NCS". No talk of that anymore, not happy it is not getting checked.
Keep on top of it!
if I remember correctly, my problem was the opposite, my reflexes were lessened.
Hyperreflexia is associated with damage to the spinal cord (called subacute combined degeneration of the spinal cord). Normally, your spinal cord sends damping messages to your reflexes, so they are not as reactive. When it is damaged it can no longer send those damping messages and your reflexes become more pronounced (i.e. bigger).If you have reduced reflexes, that is a sign of peripheral nerve damage.
Now I've been completely alarmist, I had hyperreflexia a few weeks into my diagnosis (2 weeks after I'd stopped my first round of loading injections). Apparently, I nearly kicked my husband in the face when he checked them, the biggest reflexes he'd seen in approx 25 years as a doctor. A few weeks later my reflexes were back to normal again. If caught early enough, it's reversible.
Hmm that’s concerning considering my 6 months of EOD. I didn’t have twitches or hyper reflexes before. The brain/cord MRI showed brain lesions (in B12 common areas, but not MS apparently) and a very small cord lesion that disappeared between MRI’s.
That sounds like MS might need to be re-considered?
I would discuss with a specialist and voice your concerns. Then they can either reassure you or book in further investigations.
I had the opposite - no reflex in my left ankle when tested 18 months ago during back pain investigations. At my neurology appointment last month, after 11 months of eod injections, the reflex is back! I've had bouts of severe to excruciating pain in that shin and ankle through the year, so it was very encouraging to discover measurable improvement. My gp didn't seem as excited as I was though... 😬
That is SO exciting!!! What a win for you!
My GP wasn’t as excited as me when my eyes improved/returned to previous prescriptions. Maybe they’re all just cynics?
When my GP was absolutely flabbergasted by some of the ridiculous statements received from consultants, I'd notice a barely-discernible raise of one eyebrow.
Pokerface part of the training, and practised often in the mirror, I believe.
Ooh good observation skills! The GP I saw today was very irreverent but she listened well to me so I liked her.
My regular one is (usually) a good listener and empathetic but I think she’s gotten to a point where she doesn’t know what to do with me anymore. I received a text saying she’d reviewed the blood test that said ferritin was 21 and that “no further action or appointment necessary” which was quite disappointing.
Yes - I'd say that, while a consultant's observation that my cognitive and memory issues and air-hunger were due to being an ex-smoker and being left with an oxygen-starved brain were worth an eyebrow twitch, ferritin at 21 might be worth two !
[My GP said that ferritin below 60 would produce deficiency symptoms and my Oral medicine consultant preferred 80+]
Thank you! But are we not all hysterical (mostly) women, whose intimate knowledge and observation of our own bodies couldn't possibly be reliable...?
And B12 our placebo of choice..??
But I know it's a huge win!
Oh yes, if you symptom watch then “that’s neurotic and you need to get on with your life” but if you don't explain symptoms in detail then “they mustn’t be too impactful”. And heaven help you if you cry because of the impact on your life because then it’s “we’ve noticed you’re a bit upset but your results seem normal, so we think this must be psychosomatic.”
Sigh.
BIG sigh.
Devasted
12 injections,still not right!
Humorous 
Your views on seeing an endocrinologist would be much appreciated
Gait and proprioception problems without SACD?
