Experiences with

Giant axonal neuropathy

I saw an article on Web MD that referenced from many studies positive effects of creatine on Parkinson's - everything from balance to tiredness and musclewasting (sarcopenia) in older adults. Has anyone tried it? What dosage? Combined with what other supplements / drugs?

Hi Has anyone out there had a implant consisting of some electrodes or simulators etc to help with chronic nerve pain. I have been potentially offer to have one for Pudendal Nueralgia. Not keen on the idea whatsoever but in so much pain and pharmaceuticals not working. Thanks

I have only been diagnoised with fibro for about 2 years, quite frankly I am pretty much been "left" to get on with it ! I have a question . Do you have cramp ? I have it very severly at night only behind the left knee , and in both feet x I do have quinine sulphate on prescription , any ideas ? Its

any study/trial done to show Provenge and Docetaxel can be done concurrently ? Tall_Allenany clinical trial to prove that Docetaxel cat be started along with Provenge. My dad’s PSA is increasing - doubling time is one month (4 weeks).

Thanks to advice on here (particularly   SlowDragon, many thanks) I've got my act together and bought the below and wondered if there's anything I need to know about what time to take them. I've got: Bioactive B12 (Nature Provides) Basic B Complex (Thorne) - I recall advice to add in a week after

While on a flight yesterday I had a few hours to kill, so listened to a podcast by Huberman (neuroscientist) on Peptides. I came away with the impression that they may help reduce the progression of PD, and reduce some symptoms. In particular: Epitalon - helps increase REM sleep by improving the

Hi All I posted previously re my husband who has very severe Rls and plmd. He started ferrous glucinate 60mg, magnesium glycinate, vit b12 and vit D in August with relatively good results til about 3 weeks ago. Previously he had been on pramapexiole but augmented on maximum dose and weened off it with

I’ve found a way to use Levodopa, and it finally works for me—previously, I had very negative effects. In short, I take it not before going to bed but after I start experiencing RLS symptoms. At that point, dopamine levels are low in the brain, which prevents the neurotoxicity that causes the side effects

My doctor won't prescribe me gabapentin because of side effects instead I was given quinine sulphate which, surprise surprise, was no use at all. Is there anything else I can ask for that might help that he will be more likely to prescribe? I saw some people mention clonidine, is that of any use with

I had a knee replacement in 2016 and RLS started shortly after. I had a spinal anesthetic. It involves muscle spasms in my quads, usually one at a time but occasionally both. I just had a revision of the knee and it made the RLS worsen for a bit. I am on Gabapentin 600mgAM , 600 mg 5PM and 900 mg with

My husband's latest renal function test shows his creatine levels are now below the normal range. Is this significant? Is there anything he could or should do? I have read that camomile tea can reduce elevated levels of creatine; as he drinks that several times a day, should he reduce his intake?

I've recently been told I have low salt levels after a blood test. I've never cut back on salt in my diet but don't eat any ultra processed foods. Initially my reading was 128 by adding a great deal of salt to my diet as advised by one gp also to cut down on my liquid intake my level was up to 134 .

Hi everyone! I hope your weekend is going great. I just wanted to share that after nearly 2 years of treatment and many adjustments to find what is optimal for me, I feel fantastic!! I am now having 1.5 hydro daily, ( was 1.5 hydro 2x daily for 5 mths) magnesium glycinate, folic acid 5m, 2x coconut

I am wondering if anyone has had this surgery,I need to have it carried out with an iliac crest bone graft and tendon transfer. I have exhausted all other avenues. If anyone has experience with this I would be interested to hear.

I have insomnia on Naraparib and I've heard that magnesium is good with helping to sleep. I've checked the drug interaction to see if it's ok to take magnesium, there's no contraindication so I wonder wonder if anyone else has tried it and has it helped with sleeping? Many thanks.

Hey all, I am on dose two of taxotere and today I feel my mouth and especially tongue growing numb. Has anyone else experienced this? Any home remedies? Also feeling light headed. Just wondering how common these symptoms are and when they usually occur and how long before they hopefully leave! Sending

I am a senior and had my flu shot. I have Hereditary Motor Sensory Neuropathy. The flu shot affected me with a neuropathy episode and took 2, 100 mg extra gabapentin which is working. I take 5, 100mg per day at various times. Has anyone else had this problem.

It’s been nearly three years since I began my journey of self injecting daily with methyl B12. Within this time period I began taking Lyrica to ease my neuropathy and was hoping and praying that this might be reversed with sufficient treatment. As of a few months ago I began to experience increased neuropathy

Now experiencing pain in arms every evening about the same time as starting to take evening meds. Is this a painful variant of RLS or a side effect of gabapentin or withdrawal symptoms from the regular release hydrocodone? Planning to ask MD to try Buprenorphine/ naloxone on my next visit. Hydrocodone

Hi All, Jools, Sue and everyone do you know how much Oxycodone is safe to take? I was prescribed 5mg did nothing. Neurologist letter adviced G.P to go to 10 mg Oxycodine with 5mg Naloxcone. G.P said he’s only prepared to prescribe 10 mg Oxycodone and he can’t prescribe Naloxone as it not allowed