Foggy's "Invisible Illness" Support


Hi,have been diagnosed as probably suffering from C.I.D.P for 3 months now.Started with peripheral neuropathy in my hands and feet and progressed from sensory pain to muscular pain and wasting.Treatment so far has been steroid prednisolone starting at 60mg weaning down to 10mg.Has helped tremendously but lowering dose has bought tingling back.Anyone else out there suffering with this condition?

6 Replies

Have you had your B12 tested ? Any result below 500 can present with neurological symptoms which PN is .... Brain shrinkage also linked to LOW B12.


Yes, have had plenty of blood tests.Am under specialist in London he has told me my blood results are boringly normal! Have had lumbar puncture, MRI scan, CT scan, nerve conduction studies.Steroids are helping but I don't want to be taking them long-term. Still have not had an official diagnosis as yet.Back up to London hospital tomorrow.


You are legally entitled to have all copies of your blood test results. When you are told you are normal - they mean in range - however it is where you are in the range that is key to health. So it could well be worth of getting hold of that B12 copy result to see where you are. Folate also needs to be tested as it works with B12 in the body. Normal is an opinion and not a result :-)

Like you I have been under lots of different specialists but eventually have found my own way back to wellness. You can click onto my name at the top of the post and have a read of my journey - only a couple of minutes :-)

Hope all goes well tomorrow.


Just been reading about your condition and how the myelin sheath is affected. In that case both VitD and B12 levels are needed ....

I have weekly B12 injections for nerve damage and take big doses of D3.


Thanks Marz,

Interestly I did have a very low reading of VitD and was put on a high dose of D3 supplement. I will ask the specialist for a copy of my blood results tomorrow.Could prove interesting.

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Hi Lula70 - how did it go with obtaining your blood results ? How was the B12 ?

When taking a high dose of D3 you also need to take VitK2 MK7 - this prevents increased calcium from remaining in the arteries and sends it to your bones and teet. Magnesium is also a co-factor :-)

Only just seen your reply - click onto the Green Reply button of the post so the person receives an alert !


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