Diagnosis and prognosis for neuropathy

Hello, I am new here. I'm 25 and I've had Rheumatoid Arthritis for almost 5 years. It has been stubborn, aggressive and resistant to treatment until recent months I started anti TNF treatment (cimzia injections - my miracle drug!) in August and around the same time, I noticed the following symptoms:

- Random patches of numbness in legs

- Random feelings that someone is pressing ice against my legs

- Numbness and tingling that starts in feet and shoots up into calves

- Persistently icy feet even though I am the hottest person ever

- Thigh/hip/back is the major one, scans have shown nothing and I can barely walk. It's tingly, numb, feels heavy like my thigh bone is made out of lead.

The latter symptom, however, I have had for 2 years. It was assumed to be RA but since MRI showed absolutely nothing, my rheumatologist said "it sounds like neuropathy" and suggested gabapentin or pregablin. She originally said it was a side effect to the cimzia but I've been off it since February (for other reasons) and no change, so she suggested it was a coincidence and that I have developed neuropathy but reassured me it 'settle down' when my RA flares down. However,.I am not convinced it will 'settle down' when my RA does because while I was on cimzia, I was in clinical remission and still had these neuropathy symptoms!

I googled because I know nothing about neuropathy and it implied that it is nerve damage (am I right?) so am I stuck with this forever?

Please can I have some advice?

2 Replies

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  • My understanding is that neuropathic symptoms can settle down. Also, even damaged nerves can heal, I believe.You might want reassurance from a neurologist if you are not convinced by the rheumatologist. I think we on here have all worried about neuro problems at some stage.

  • I have Arthritis instead of RA but I have all the symptoms you have. I saw a Neurologist for nerve damage and was given a EMG/NCS testing of the nerves. Mines came back negative and the doctor told me all I was feeling was because of Arthritis and not Neuropathy.

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