Hi everyone, I’m new and yet to be officially diagnosed… lumbar puncture 2 weeks ago, will see what that comes up with and what options the clinic and neurologists give me then. Started as with many on this forum… 4 years ago… a slow wave of numbness from my toes up my body to my hands over a couple of months. Did bloods and MRI, no traces of Lyme or lesions on spine or brain so cleared then. Numbness is still there but I attributed it to lower back issues (I was using an osteopath for back pain) thought I had trapped a nerve. In November 2018, my left eye started to cloud over, over 2 weeks I lost around 85% of vision in that eye, so went for eye tests, neurologist, bloods and MRI again… still no lesions but neurologist convinced it was RRMS or Neuro Myelitis Optica (no trace for this in blood however). Sent for Lumbar puncture and that brings us up to date. Vision is slightly blurry in the left eye still and still get a bit of numbness in fingers and pain in lower back. I’ve read up on a few things, gene therapy not open to me until I am diagnosed of course but I am still not keen. I’ve been trying to correct some of my symptoms through diet and Holistic Medicine… if you are totally against this you may be better to stop reading now as you might think the following things I have been trying to aim for are ridiculous: Trying to correct the leaky gut that is attributed to MS… pre/probiotics An alkaline stomach and therefore alkaline body… lemon water, greens, less meat, no added sugar, no fruit juice unless it’s from the whole fruit. No processed food or microwaved food… I’ve done this for years but this I feel is quite important Traditional Chinese Medicine approach… an acupuncturist has said that my body is classed as having cold damp (common with MS patients) in the liver so am having foods that balance it where I can… pumpkin, kimchee, yoghurt, corn, aduki bean and avoiding dairy, wheat and bananas annoyingly. Taking LIONs MANE supplements (supposedly can help with the myelin sheath repair) I am now doing a lot of gym sessions to lose weight… I do Olympic lifts and rowing/running so take vegan protein, joint supplements and amnio acid complexes for muscle repair. Sauna sessions for my back, my gym also has a heated stone chair thing that is quite good. All that being said it’s hard to have a baseline, I cannot remember what being 100% sometimes I get to a point where I forget I have an issue, other times I’m wobbly, blurry and my back feels like a bag of gravel, very uncomfortable. Looking on the bright side though, nothing has stopped me from working yet, enjoying time with my wife and kid etc. Just thought I’d put this here and see what anyone thought, if anyone had any questions OR if anyone has any advice… I’m all ears, as you can see from the things I am already doing, I’m willing to try, so any help is appreciated. Has anyone on here not opted for the gene therapy given the option and done it themselves?? Lloyd.
Welcome to the forum.
I was going to stop reading as I’m not a believer in alternative medicine.
However, I thought I’d respond to your points about ‘gene therapy’ for MS. It doesn’t exist.
Tests have been carried out on mice. That’s it. See https://multiplesclerosisnewstoday.com/2017/09/25/ms-gene-therapy-shows-excellent-results-in-mice-but-human-trials-remain-distant/
Best of luck with the alternative therapy. If you are diagnosed with MS, and would like any information about drug therapies or any other more mainstream means of managing your MS, I’ll be happy to advise.
Thanks Sue, as I said I’m open to learning about anything, so drug treatments are included in that. I’ll be keen to hear from you if I am given options for drug therapy. I’ll await diagnosis before going too crazy with the hypothetical but to me it makes sense what you put into your body can change your inner workings enormously (after all, you put drugs into your body and expect change, why not diet?) Lloyd
And I perhaps had a bit of a knee jerk reaction about alternative therapies. Definitely what you eat is important, equally, what exercise you do is vital. So keeping mind and body strong is essential. In part, the adoption of any means that make you feel like you’re taking back some control is good.
Hopefully your LP result will be negative and you’ll have dodged the MS bullet.