Anyone lost their sense of touch?

[morebeans]

I know 'altered sense of touch' is one of the symptoms of B12 deficiency, but can't find any posts about this. I have gradually lost surface sensation all over my body so that, for example, if I put my hand on my arm, I can feel my arm with my hand, but not feel my hand with my arm. I can still sense temperature, some pressure and vibration but normal 'touch' is gone. This started at the top of my back and has gradually spread from random starting points to cover my whole body in the space of about 4 years. It's quite creepy and is getting worse, but I've not been able to find any reference to this anywhere. Think my neurologist thinks it's my imagination. Does anyone know if this is what is meant by the 'altered sense of touch' on symptoms lists?

[19davo66]

Have recently been diagnosed with B12 deficiency & low Folate. One of my symptoms which a cardiologist picked up on was when I mentioned that the back of my hands & front of my feet had lost feeling, as if the skin on top had turned to a thin layer of leather (if that makes sense) - I can feel my hands & feet from the inside, but not from the outside & anything cold that touched these parts felt wet.

There seems to be a go slow on my treatment, I have been given Folic acid to take, but nothing to top up my B12 levels.

It started out in my fingers & toes, but has slowly spread to my wrists & ankles, now arms & legs are getting the tingling feeling.

I don't know if this helps, but good luck.

David

[boydsfoolishrose in reply to 19davo66]

I have malabsorbtion syndrome which includes b12 not absorbing. My sense of touch started feeling like everything is a wet cold. It's moved across my body quickly. But my levels are so low I've got to 6 units of blood. I thought it was just me and then figured I couldn't be that special and found these posts.

[morebeans in reply to boydsfoolishrose]

Well, the good news is that, since I posted my question 2 years ago, I put myself on mega doses (5,000mcg) of Jarrows sub-lingual methylcobalamin (best form of B12) a day and within about 3 months all of my neurological symptoms had gone. I still take the B12, just not every day, to keep myself OK.

Make sure you get lots of B12 even if you're told it's 'in range'. Mine was supposed to be OK at just over 200 but I'm loads better now it's at the top of the 'normal' range.

Best of luck!

[Hidden in reply to morebeans]

Thank you for posting an update here, and good to read you are doing better with extra B12. Many will agree with your post here! Marre.

[boydsfoolishrose in reply to morebeans]

Thank you for the reply. I am a gastric bypass patient and as such have to have B12 injections. I have found that now there are bariatric specific B12 micro dots on the market. I was wondering if it would really help. Thanks for the update it really gives me hope.

[morebeans in reply to boydsfoolishrose]

Sub-lingual tablets might work too - you dissolve them under your tongue and they are absorbed through the membranes of your mouth.

[Hidden]

Hi morebeans,

I had weird feeling as if my second toe was missing, also this weird feeling of parts of my feet feeling wet (heel, and back of calf in my case), this was in 2005-6, I also had problems with balance, this has all cleared up with far more frequent B12 and folate supplements ( I.became folate def). Sometimes my balance still lets me down but I'm a lot more stable ( and stronger) now than I was.

The problem can be caused by Subacute degeneration of the spinal cord, which causes "neurological problems"; Inadequate vitamin B-12 gradually affects sensory and motor nerves, causing neurological problems to develop over time."

perhaps read this, it may help, see:

cks.library.nhs.uk/anaemia_...

"Subacute combined degeneration of the cord — a symmetrical neuropathy affecting the legs more than the arms; it causes paraesthesiae and numbness (especially in the feet), unsteadiness, ataxia, and difficulty in walking (with a tendency to fall in the dark).

It was thought that these occurred only with vitamin B12 deficiency, but it is now known that they can also occur with folate deficiency [Green and Miller, 1999]. They may occur even in the absence of anaemia."

And:

emedicine.com/MED/topic1799...

I hope this helps,

Kind regards,

Marre.

[morebeans in reply to Hidden]

Hi Marre

sorry for slow reply. I've got weird balance/spatial awareness issues too and can't tell where my legs are if I can't see them. Neurologist did tons of blood tests, MRI and nerve conduction studies which all looked OK. So there's no 'hard evidence' of B12 deficiency. My B12 was 234 when tested a while ago though and I have Hashimoto's and fibromyalgia, which both have links with B12 deficiency, so I've started myself on Jarrows 5,000mcg sublingual methylcobalamin and will take this down to 1,000mcg after 2 months. My folate levels look OK. How much B12, and what form, do you take? Can you remember how long it was before you noticed an improvement?

Best regards

Morebeans

[Hidden in reply to morebeans]

Hi,

I'm now on one every two months of hydroxocobalamin jabs on NHS, and add one every two weeks cyano cobalamin, plus 5 mg folate tabs every two weeks, I self inject. I have classical PA, diagnosed 2001, macrocytosis and very low B12. I developped the weird balance issues etc during the first 4 years of conventional B12 treatment..saw heamatologist, neurologist, MRI etc which resulted in more frequent hydroxo jabs, plus folate (was def). FRom memory it took some time (3-4 months) to realy feel a lot better, I initially (2006) started adding self bought B12 (cyanocobalamin ampoules) on a weekly basis, with then perscribed daily 5mg folate, slowly cut that back over a year, my serum B12 levels stay low though (230ish, max was just over 500 when injecting weekly), and my folate is in the middle of the ref range for normal.. I feel just good now, normal,

I'm not sure if my reply helps you, you have different issues and more to confuse what is causing what..

KInd regards,

Marre.

[Hidden]

Hi David,

It is unusual to first address a Folate def before addressing a B12 def, perhaps ask your GP why..

See:

patient.co.uk/doctor/Pernic...

•Care should be taken not to give folic acid (instead of B12) to any patient who is B12-deprived, as this may result in fulminant neurological deficit.[3]

Kind regards,

Marre.