Experiences with

Giant axonal neuropathy

As one the longest surviving prostate cancer patients, some 26 YEARS, I have also been actively involved in pushing drug trials and finding ways to stay alive until a more permanent drug regime is found. I am a senior level project manager and business consultant. As part of my practise, I was asked

Hi all I have ET jak2 and am on Pegasys, which is working well for me. I also have fibromyalgia, IBS, Raynaud’s and arthritis which don’t help with working out what condition causes what symptoms, the most common being pain, brain fog and fatigue. Many on here have posted what supplements they take

I know I have Peripheral neuropathy pain and my wife has fibromyalgia type pain, This week I went down with a virus which made my pains much worse, my wife on the other hand after catching the virus of me her pains are the same 🤔🤔

I suffer from Nerve Pain as diagnosed with Neuropathy a few years ago. it’s affecting my balance and making walking difficult. so much night time pain and burning in my legs. Feet feel so hot. I also suffer from muscle wastage on my thighs and hips which are very painful. Awaiting appointment to

As many of you will have read my earlier posts I have been one of those many grateful people whose life has been positively changed by association with this forum My journey, briefly, was DAs to augmentation to oxycodone to low dose opioid (buprenorphine) and finally to a personal formula for RLS control

I started SI on 22/12 EOD. Had more neuropathy initially, probably due to reversing out. Last few days I have felt much better with massively reduced brain fog and less neuropathy. Previous 2 days I actually walked (slowly) outside first time for 8 weeks. Did a very gentle 2.8k yesterday with a cafe

I'm building some tests to track my disease progress for my hands and finger. And I stumbled upon a couple of articles, including the one below. "Bradykinesia assessment in Parkinson’s disease" https://www.ai-for-health.nl/projects/bradykinesia/ I couldn't find any good online tests. So I had ChatGPT

Hello all I've been pricribed trulicity to help with weight loss but have read it can interact with sotalol and also affect abortion of tablets and mess with electrics and speed up heart is there anyone else that has any experience on both drugs thanks

I have stopped using Neupro patches, but still have to take 3 x 100 mg Levodopa/Carbidopa because I also have Parkinson. For the first time I took 100 mg Gabapentin at 8 pm. It made me feel dazed. I went to bed at 11 pm. My legs didn't realy feel calm. At about 1 am RLS started to kick in and it

Hi it’s me again - happy new year I know , it’s awful , spent Christmas in silence suffering while everyone could sit without issues. Im still trying to beat this beast of a tight pelvic floor. No pain in the genital area , no problem passing urine and no erectile dysfunction. I pass stools fine…it

I am currently taking 1800mg of gabapentin but I need more help. I take them 6:30, 8:30 and 10:30. My problem being I can get quite bad restless legs starting earlier in the day, 4pm or earlier which will carry on up to bed time and beyond. I do often supplement them with cocodamol but that doesn't

Hello community - I was on Oxycodone in the form of Targin 35mg a 24 hour period for 3 months for cancer pain. It worked really well for my RLS but stopped working after 3 months. I asked my doctor if I can try Bupramorphine instead. I have been given 20mg 7 day patch which works well for pain but

Niacin Cures Systemic NAD + Deficiency and Improves Muscle Performance in Adult-Onset Mitochondrial Myopathy 2020 https://www.sciencedirect.com/science/article/pii/S1550413120303016 To read the full article click on the PDF link on the page. "NAD + is a redox-active metabolite, the depletion of which

It is now 20 years since my thyroidectomy and loss of one or more parathyroids, requiring me to take meds for my lack of parathyroids. I would like to know what other people take? I am on Alfacalcidol, VitD3, Magnesium for my bones. Any suggestions as I would like to stop taking Alfacalcidol

anyone got any comments on this article? I was diagnosed with PD this summer . My older brother passed away from a Glioblastoma in 2009. This article really has me thinking!

Good that the article has been published - but they should not have missed the different forms of B6 which might be very important. [i]Simon never linked the pain in his hands and feet to multivitamins – but a pathology test did[/i][i]A growing number of consumers are presenting with symptoms

Good that the article has been published - but they should not have missed the different forms of B6 which might be very important. [i]Simon never linked the pain in his hands and feet to multivitamins – but a pathology test did[/i] [i]A growing number of consumers are presenting with symptoms

Hi, Just wondering if anyone can help with answers for use of these devices while having a prolapse please. I do my pelvic floor exercise's regularly but I'm never too sure if I'm doing them 100% correctly. A friend suggested a Kegal Device but I don't know if it's ok to use one with a bladder prolapse

4b HGS, BRCA 2. On chemo and then 2 years of Olaparib, I developed peripheral motor neuropathy from knee to ankle and needed to use walking stick for heavy legs and resulting poor balance (previously walking like Miss Skippy Toes). 4 months after my last Olaparib (Jan 2024) , my walking was slightly

Any advice would help. For the last couple of months so have had these weird sensations in my legs. Like a mobile phone buzzing or electric tooth brush. Mostly in my foot and lower calf of my right leg although sometimes it goes to my other leg and lower torso. It’s difficult to explain. I get