Experiences with

Giant axonal neuropathy

It is now almost 3 months my hwp has been on low dose ( 1,500mg) Tanganil. He is 77 , diagnosed 2018. With hindsight there were symptoms for some years. He has struggled with stress tremor and bradykinesia. Most debilitating has been sciatic nerve pain. There has been marked improvement. He is faster

Thank you all for replies. The doc called me to the surgery, checked my heart, showed me my rather reassuring Qrisk algorithm and did not push me to statins like the last one did, (with death threats!). Script given for propananol as I can’t seem to bring down this pounding heart (he couldn’t pick it

Having had RLS for over 60 years I’ve experienced different phases of the curse and I wonder if anyone else has had similar symptoms. I have kept a pain diary for several years to document what’s happened but also I’ve been trying to find out why my RLS comes and goes - is it to do with air pressure

After the help I had yesterday, another question.Can I ask if a multi b vitamin is necessary? The dr I saw at the start says no, as you can get most from food, I have read on a fb group about taking multi b's and I did for a short time take the recommended ones, without b6 though. I know that b6 can

Metyrosine (Demser) - Jonathan Sackner-Bernstein, he has a completely new approach - see article... He is preparing a study with Metyrosine (Demser). It will start with a low dosage (well below 250mg) and then be increased. However, only people with Parkinson's who are not yet taking L-Dopa are allowed

I had to try Gabapentin and Amitriptyline (both of which I could not tolerate ) before I could be prescribed with Lyrica. I have had no side effects from Lyrica ( it has a different delivery system from the other two.) Lyrica has certainly helped my chronic trigeminal neuralgia. Nerve pain is

I remember reading that it takes gabapentin some time to reach its peak. Can you tell me how many hours that is? I know not to take more than 600mg at a time and to space them out by at least 2 hours. And to avoid magnesium and calcium for 3 hours before or after. Also, is there a way to search certain

Driven by high doses of Levocarb, On a hunch, I went back to a genetic test (which dealt with Detoxification) result from 2009 that I received early in my diagnosis that was never clearly explained to me or properly documented as it turns out. It dealt with the COMT gene. What follows is the answer to

my LDH has been consistently rising since my CLL diagnosis in 2020. Past two blood draws (six months apart) it has been outside of (above) normal. But all my other numbers are steady. Been on watch and wait. But getting nervous. The doctors say they aren’t worried. My total lymphs are 8.4. LDH is 289

I have a friend in the medical field that has done some research about NAD intravenously.Below are a few links that they sent about the research. Does anyone have any experience with this first-hand? Looking for ways to reduce my tremors. https://parkinsonsinstitutesarasota.com/nad-therapy/ https:/

Can you please help me prepare for the appointment. I have augmented and suffered since childhood. Pregabalin caused frequent dizziness and falls. On Gabapentin at the moment, I also have bad balance issues (like being drunk). RLS is not eliminated.Please advise on dosage of opiod, which one would be

has anyone with findings on their biopsy with Nodular regenerative hyperplasia? I hope I spelt it right…. If anyone can tell me what happens after it is found ( tests. Monitoring)I’d be grateful. Thank you!

Morning ladies. Please tell me how you are monitored after 1st line treatment. I've been told nothing over 3mm visible ( as of September 23). Then torture of 3 weekly bevacizumab for 9 months. Along with lynpraza (ongoing). Mentioned a pain lower left recently, Dr pressed there and said nice and soft

https://pubmed.ncbi.nlm.nih.gov/33279231/ This is a systematic review on cdp choline as an adjuvant therapy for parkinson's. Came across it in a LK Mischley document re using 2 by 500 mg cd choline per day apparently improving the effectiveness of levodopa Very important! Please note park_bear's

I was told by my Neurologist that Chronic Kidney Disease, which I have can cause Peripheral Neuropathy, and also that Peripheral Neuropathy can effect kidneys. I am taking Gabapentin that is reduced by Doctor as it can possibly effect your Kidneys

The study compared the efficacy of different non-pharmacological interventions for sleep disorders in patients with PD, and results suggest that massage therapy may be the preferred non-pharmacological intervention for improving sleep disorders in PD, followed by music therapy and treadmill training

It's obvious that folk on this forum tend to prefer rhythm control - for me a no-brainer as someone whose AF is very "symptomatic" - as doctors understatedly refer to it. I think it's worth pointing out that continuous (/permanent) AF is not necessarily as bad as we rhythm preferrers might think.

Good morning everyone. I am on 3 ×5mg Nifedipine and still get some Raynaud's in fingers (I am using an electric blanket in the photo as gas in the UK is now far too expensive) and in cold weather in feet, outside. Does anyone have the same problem?

My father (71) has been recently diagnosed with PC that has metasized in his bones (multiple places including ribs and spine).The doctors are insisting on orchiectomy or a high dose of Degarelix before the biopsy results are available) followed by monthly shots of Lupron. The mets in his spine has the

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 🤔🤔