Undiscovered condition?

[CherryLala]

I can't feel when my muscles and bones are moving, it's like I have lost the sensation of feeling but I can feel a little bit. When I walk I can't fully feel my legs moving and I find myself staring at something for a while when I have had enough sleep. Does anyone know what this could be a sign of?

[pvanderaa]

Nerve damage - vitamin B12 deficiency? Check out the pernicious anemia forum.

[CherryLala in reply to pvanderaa]

Ok, thx.

[DartmoorGuerrilla]

It might not be a vitamin deficiency. It could just as easily be an unrelated neurological condition. Don't ignore it, see your GP.

[pvanderaa in reply to DartmoorGuerrilla]

How familiar are you with B12 in particular? Sounds like you are minimizing its importance to nerve health.

Of course any possible nerve damage should be checked out by a GP. But one should be prepared because it is very often misdiagnosed.

[DartmoorGuerrilla in reply to pvanderaa]

I'm fairly clued up on neurology in general through work. I'm saying don't jump to conclusions. It's dangerous to assume that everything that's ever wrong with us is connected to coeliac disease.

[Marz in reply to DartmoorGuerrilla]

..but it could be connected to LOW B12.

[CherryLala in reply to Marz]

Yep... mum says that it's connected to the brain and its complicated functioning.

[CherryLala in reply to DartmoorGuerrilla]

I saw a doctor before and he said he has never come across, or heard of, anything like it.

[DartmoorGuerrilla in reply to CherryLala]

Well maybe it's time to ask your mum to get you referred to another GP for a second opinion, or get referred to a hospital neurologist.

I can think of at least four or five conditions unrelated to coeliac that your symptoms could relate to.

Don't ignore symptoms, don't get fobbed off, don't let a GP patronise you just because you're 15 and he couldn't be bothered. Look after yourself and get it followed up!

[CherryLala in reply to DartmoorGuerrilla]

Hospitals are busy taking care of people seriously ill though. I don't know if I should take their time again, last time GP asked if the symptoms were stopping me from working at school etc, I said no. When I came home my Mum said I should have said yes then maybe they might have been more concerned.

[pvanderaa in reply to CherryLala]

B12 deficiency is a serious condition and the neurological damage caused by it leads to very serious illnesses that get misdiagnosed by those diligent DRs in those hospitals all the time. There are three tests - serum B12, serum or urine homocysteine, or serum or urine methylmalonic acid. Ask your GP to test for them.

"Normal" range for B12 is 200-900 pg/mL but anything less than 400 can cause neurological damage in 10% of the population according to a caveat that the diagnostic labs include on the results. You may be in that 10% so get tested please before the neurological damage gets worse.

You don't Abuse nitrous oxide gas I presume or take lots of antacids?

[CherryLala in reply to pvanderaa]

Nope, thx for replying.

[Marz]

b12deficiency.info/signs-an...

Do you know your B12 level ? It needs to be over 500 to prevent neurological symptoms. When there is mal-absorption it is not unusual to be B12 deficient. Do not accept NORMAL from your GP. He may mean - in range - but it is important where you ARE in that range. Normal is an opinion and NOT a result....

Also whilst testing for the B12 - check out the Ferritin - Folate - Iron - VitD - all are crucial for good health and all affected by mal-absorption !

[CherryLala in reply to Marz]

Thx. Doctors aren't too concerned but one said that I lack iron.

[Jacks]

Sorry about this but how old are you? Sounds like my old Dad and he had early onset Alzheimer's -

alz.org/alzheimers_disease_...

He wasn't coeliac.

[CherryLala in reply to Jacks]

15 years old.

[pvanderaa in reply to CherryLala]

I presume you are also female. The loss of blood during your period can also cause addition loss of vitamins because the body has to use them to make up the lost blood.

Keep a diary or logbook of your symptoms? Do they get better and worse every month? Maybe only 24 hours after eating something you are allergic to.

Are you a vegetarian or vegan? B12 comes from meat and if you don't eat meat, you need to supplement with B12 vitamin pills.

[CherryLala in reply to pvanderaa]

Yes, I'm a female. I feel the same sympyoms every month (since this has started) and I eat meat & love dairy products.

[pvanderaa]

Just checking back. How are you doing?

Do you keep a log of your symptoms in addition to your food and drink? Also your period.

I find my gluten symptoms appear within a couple of hours but the brain fog I get from eating gluten occurs 24 hours later. I also notice similar detoxification symptoms when I take my B12 jab.

Any further development in your neurological symptoms?

[CherryLala in reply to pvanderaa]

I feel even more numb but another doctor said he didn't know what it was and asked if it was preventing me from doing daily things. I don't know who to ask for help.

[pvanderaa in reply to CherryLala]

Has your blood level of vitamin B12 ever been tested? Any results you want to share? The people are pretty good at analyzing blood results and giving you additional ideas of what to do.