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 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.

Hello Not posted before so here goes .Suffered with osteoarthritis in both hips for the last 7 years , had Left Hip THR last July . Recovered well but then started with severe pain and stiffness in left knee which then progressed to both knees , shoulders , hands , neck over a period of 4 weeks . Diagnosed

So I had a really good appointment today with professor Hughes. He listened to what I had to say and had read the medical history pre read I had sent him. After a good chat about my PMR/pred journey and all the steroid sparing drugs I had tried he came up with 3 options. 1. Stay on 10mg of pred and

Of late, I have been reading the effect of a compound called Tocotrienols (one of the two classes of compounds available in Vitamin E) on type-2 diabetes subjects. According to some of the research papers published (links provided below) , having 250 to 400 mg of tocotrienol for around 6 months reduced

I am slowly discontinuing Ropinerole and have reviewed Winkleman’s medication recommendations. It appears that Horizant has the best overall profile of the gaba-related drugs. Can anyone please describe your experience with it? I am interested in RLS symptom reduction of course, but also on sleep quality

Is it considered ok to use Voltarol cream when taking Pred? I am confused as to whether it's an NSAID. I am hoping to use it on what is supposedly an artritic knee joint.

A good news story. My Rheumy retired suddenly recently to my dismay as she listened etc, but her replacement is such a good communicator. Sent me a letter with MRI result and when I replied with lots of questions he responded by answering them all. Also may have a sense of humour as I pressed send by

My husband has been on separate vitamin B capsules,B12,B2,B6( P5P) and Biotin.In Daphnes very informative book she says that the original protocol had been with a low dose B complex .would this be every day,or only on the Monday Wednesday and Friday when taking B1? Should we stop his larger dose and

My balance is no longer a major issue. I am working on improving it. I do work on my core. I consider my balance issues to be a neurological issue. I balance on both feet or one foot and focus on one point. Then I move my eyes back and forth in focus and same up and down. I also move my head to change

I treat my polyneuropathy with B6 and B12. GracePV shared their experience with B6, B12 nd B1. This inspired me to revisit my self treatment of my polyneuropathy. I came across information about Benfotiamine which is similar to Thiamine Hydrochloride and Thiamine Nitrate. There are indications

B vitamins are essential for brain function and are generally safe to consume in higher amounts than recommended. However, many people and definitely PWP, have deficiencies in one or more B vitamins, which can negatively affect brain function. Previous research has focused on three B vitamins (folate

Hi, i was diagnosed with FND recently after having tingling, pins and needles in my legs and feet. My right side is mostly effected and my right leg is weaker and seems slow. Whenever I have tried to exercise within a few minutes the tingling and numbness gets so much worse and the leg becomes really