I was diagnosed finally with non systemic vascular neuropathy. I did put a reply up earlier today but not sure where it goes as I’m new to this chat. I have suffered so much in the past year so I joined to help other people who may be suffering possibly with the same problem as it very rare and difficult to diagnose and the pain without treatment is diabolical. my chronic pain stopped after 3 hrs on a ketamine drip in hospital. Amazing. Take care that they don’t give you too much. Needs to be well supervised. I also had steriod drips and an immune support drip in hospital. I used to take steroids, an immune suppressant (still do )as well as 300 mg of gabapentin which I didn’t like. No more gabapentin now for the past 4 months as no nerve pain.
I have drips of 2 drugs steriod and imiran every month. My immune system has stabilised and the inflammation has gone. As before I am taking 4 mg prednisone a day and Imuran an immune suppressant drug as well as vitamins … vitamin B12 an insolar tablet and Centrum Advance every day and have a B12 injection every month. My immune system has returned to a normal level. I’ll be off steroids soon and will remain on Imiran .. small dose every day till the end of year .. hopefully..I m not sure how long I will have monthly drips. I take a non addictive sleep helper called Dyvito.. a newish drug that seems to work well with no after effects. All tablets are prescribed by my specialist who presently is the only neurologist I know of who can treat my condition. None of the tablets I take now have had any bad effects. I did try cymbalta initially for leg tingles but stopped because of nausea. I was prescribed cannabis oil but I’m not sure if it helped. Very very expensive and needs doctors script to get it in my state NSW. Rolling pin is great for leg aches. I swim gently to strengthen my legs. My progress has been monitored by my neurologist in Sydney.. he is amazing and does research as well. I thought there would be many USA neurologists who could help you but as I said before it is an rare disorder and difficult to diagnose.. not sure why. To get a correct diagnosis my blood sample was sent to Texas as we are behind in small nerve testing methods in Australia presently.
We are fortunately in Australia as we have a vg Medicare system so when I’m in hospital as an inpatient I pay for very
Little. Specialists in their rooms cost a lot but if you have private health insurance you can claim which reduces the costs. Tablets are not too expensive and the monthly drips don’t cost me anything as I go in as an inpatient as with the MRI…I’m very very fortunate. Unsure about your system. I wish you all the best.I did take Palexia IR but only when pain was unbearable. Not now though. Pls let me know if you have any success.