Experiences with

Neuropathies

I also have several neuropathies. I have occasionally had a weird symptom when I pass water. It’s difficult to explain but sometimes I get this sensation in my hands like tingling or a very mild electric shock. It is very odd and I wondered if anyone else has this problem?

I am coming up to year 3 of PMR journey and, at the moment, am on 9.5 mg of Pred. In that time, I have undergone 2 Carpal Tunnel Syndrome (CTS) operations and, as from Monday next 20 January am possibly going to have a steroid injection in my right knee. Recently, I had an MRI scan on my knee which

Morning everyone. For the past 4 weeks I have been getting pins and needles fizzy feeling in lower legs and feet and from elbow to hands. It’s constant even in bed. I have G CAbut not PMR. They have told me to stop methotrexate for a week but it’s still there. Any ideas what can cause this. ?

my gp has allowed me to try pregabalin which eases nerve pain. Previously i have had a lot of painful pins and needles in feet legs hands and arms . and sometimes face. Though sensation in feet is still not normal the pain has improved considerably and that makes life with fnd bit easier.

I know there have been a few posts recently with people saying their doctors don't know why they are having tingling and other symptoms of peripheral neuropathy. I have just read an article in the Guardian which is warning of potential overdosing of vitamin B6 because they are taking various supplements

Hi Everone , special thanks to PMR Pro , Snazzy D and Dorset Lady for constantly advising as well as others on this marvellous forum . I`m suffering badly with adrenal insuffiency symptoms(Extreme fatigue , Anxiety , feel like I`m not on my own legs , Gastro discomfort, etc. ) . On 8 mg of pred at

I recently had an appointment with a spinal consultant and he did some tests. In his letter he mentions the results but I am a bit in the dark. Can anyone help? I had a look on Google but the info was not clear. Thank you... He suggested b12 infusions Romberg test is negative upper limbs - Hoffman

As some of you know!!! I have reduced from 15 mgs 3 years ago to 1 mg at present.. trying Dorset Lady’s sensible reduction.. now trying 0.5 mgs gradually. I don’t think I’ve ever had a Flare as such. Never back to what started me off on pred 3 years ago . But I have throbbing feet.. etc.. now tingling

Hello, I realise this may well be impossible to answer but just thought I’d ask. Could Scintillating Scotoma’s and episodes of severe, fairly short lived, double vision be a sign of GCA? I have no GCA like pain, “just” PMR pain. I will tell me rheumatologist but as he’s about as much use as a chocolate

I’m two and a bit years into my PMR journey and have just gone back up to 10mg of pred a day with my doctor’s blessing following a flare at 5.5mg/day. My question though is about a prickly/sore/burning sensation on my left forearm. It’s very isolated to the area below my elbow to above the wrist. Sometimes

I find that farmed fish, in my case salmon and sea bream, can trigger my RLS Does anyone else have this problem? Why should this be the case.? I have found one source which suggests lack of astaxanthin might be the answer Astaxanthin is apparently the most abundant carotenoid in the marine

Either way I suggest getting this uncommon blood test along with the more common B12 if experiencing neuropathies.

I hesitated to send this obscure bit of research. It’s actually on healthy volunteers and a very small sample. I’m going on holiday tomorrow and struggling with a uti and diarrhoea. I have delayed my Rifaximin to take then but had to treat the uti and was worried about overlapping antibiotics so I did

Hi i would like to know if anyone alsof experiencing extreme lockjaw, tetanus with fnd? I have this for several years and i was diagnosed with fnd last year. Symptoms spams, tics, walking difficulties. But i try to find out if the lockjaw was an early sign.

Hi all, Has anyone tried Alpha Lipoic Acid for nerve pain? I am on Apixaban and can't find any contraindications with this supplement. The best formula is apparently R-Alpha Lipoic Acid, but this is very expensive. One reputable company sells a 50/50 mix of R-Alpha Lipoic Acid and the synthetic S-Alpha

Hi - started at 20 after diagnosis in January of 24 and my reductions were as follows - each after 4 weeks and a rheumy visit 20 -15 -12.5 -10 - 7.5 -6.25 -5– 4.5-4 and most recently to 3.5. When I went to 4 I noticed a bit of hand swelling and loss of grip strength. Now at 3.5 I notice it a lot.

Hello everyone!!! I think I have been dealing with peripheral neuropathic pain. There’s not a medicine yet that has helped with this pain. Anyone else experiencing this issue?

Morning, could anyone give me some advice on latest BT results please. I take 150 Levothyroxine ( 75 prescribed by gp, the other 75 I have sourced myself). Still feeling tired all the time, brain fog, & all the other usual symptoms. I take vit D+k, B complex, magnesium glycinate & folate. Many Thanks

I am currently on Dimethyl Fumarate and it helps a bit so I'm a bit more active. However, I still have a hard time getting around, and I've been sleeping 20+ hours a day for the past few months. It isn't even good sleep, very interruped. I originally thought it was the Gabapentin I take for nerve pain

I was wondering if anybody with ALD/AMN in the UK was using Dalfampridine (Ampyra) to help with walking? I believe that it was initially an MS drug but it is now being used around the world. As I understand it, it is approved for Wales and Scotland but not for England.