Chronic nerve disorder /damage: Hi everyoneSo I... - LUPUS UK

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Chronic nerve disorder /damage

ijeasike profile image
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Hi everyoneSo I have been having episodes were I feel something biting my bones in my arm and legs. It feels like the bones are going to pop out. I get a stretchy sensation and am unable to control my arms and legs. They keep stretching out. I had this episodes as a child and it started happening sparing as an adult. But it became fairly regular last couple of month. I spoke to my consultant and he sent me for a nerve test and a breathing test.

I went for the nerve test last Saturday and the Neurophysiologist, tested my balance and the test involved some electric shock. He asked my mum (who accompanied me) if I had falls as a child? My mum said I was a normal kid. He said I had a chronic nerve damage in my arms and legs. My arms are better than my legs. He said, when he first saw me he thought everything would be fine because I am young..... ish😂.

We kind of went through my medical history and ruled out hereditary, I had a small dose of chemotherapy (cyclophosphomide) for 6 months in 2012 (not sure if that triggered it too). He was kind of learning towards my lupus. He said my symptoms did not fit the result but he will send the results to my consultant. I asked what can be done and he said the best thing is not to have it in the first place 😒. Nonetheless am waiting for my doctors appointment.

Please has anyone got this and what is your line of treatment. I am on amytriptlyn and gabapentin for my feet. It seem to be doing nothing I guess. Sorry for the long nite. Xx

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ijeasike
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Rosills1 profile image
Rosills1

So sorry to hear your problems.I hope your doctors are able to help

You may want to read some of the resources here to see if anything relevant.

b12d.org/

I cannot give specific advice

Btw the BetterYou spray is on offer in Boots

Do you take vitD?

vbw

ijeasike profile image
ijeasike in reply toRosills1

I have been taking it for the past 10years. Thank you I will read the resources.

Rosills1 profile image
Rosills1 in reply toijeasike

What kind of doses and preparations?

ijeasike profile image
ijeasike in reply toRosills1

1000ui 2x a day

Djlr profile image
Djlr

HAVE they Tested for CIDP -

CHRONIC INFLAMMATORY Demyelinating Polyneuropathy :

rarediseases.info.nih.gov/d...

- Appears at a VARIETY OF AGES

- NERVE ENDINGS in FINGERS / Toes (Myelin start to deteriorate)

- Autoimmune Disease

- TREATMENT = PLASMA THERAPY INFUSION once a month (works really well)

gbs-cidp.org/cidp/

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