Guest guest Posted August 5, 2004 Report Share Posted August 5, 2004 Donna and Mike, Hello and welcome! I, too, had Optic Neuritis as my first symptom back in Dec '96 (Christmas Eve to be exact). I did IV steroids. Vision returned. One year later, the other eye. Did Prednisone. Vision returned. Four months later it returned in the same eye. I opted for no steroids. Vision returned slowly. By 2000, my vision was gone in the left eye, and I thought I would have to live with it. BTW, I did Avonex injections for the first two years with no improvement or slowing of progression whatsoever. By the end of '99, I was unable to walk at all. If I had known about LDN, nothing would have kept me from getting a prescription. And I do mean NOTHING!!! My vision did return, and I haven't had any more Optic Neuritis since I started Pregnenolone and DHEA in 2001. I feel that since starting LDN in Nov '03 that I haven't progressed. I'm holding my own!! that's better than spiraling downward out of control!!! My advice is to NOT waste time mulling over all the mainstream medical jargon. Take the LDN info to your doc, let him/her look it over, have him/her call Dr Bahari, and go from there. Truly, what do you have to lose? If you start LDN now, you may never need to consider anything else! Hang tough! Your in a fight for YOUR life, not the doc's life. Stand your ground! We are all here to help you through! Marcie (PPMS) In a message dated 8/5/2004 6:27:56 PM Central Standard Time, westmr@... writes: Hi Members, My husband had just been diagnosed with optic neuritis, but this was not his first experience with it. His brother and two first cousins have m.s. He is currently waiting for an M.R.I. We are reading everything that we can to try to decide which treatment he will opt for. The news about LDN sounds so encouraging. We were wondering if anyone else had optic neuritis as their initial symptom and how they are doing on LDN. This is all very new and scary for us,so any feedback would certainly be appreciated. Donna and Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi Members, My husband had just been diagnosed with optic neuritis, but this was not his first experience with it. His brother and two first cousins have m.s. He is currently waiting for an M.R.I. We are reading everything that we can to try to decide which treatment he will opt for. The news about LDN sounds so encouraging. We were wondering if anyone else had optic neuritis as their initial symptom and how they are doing on LDN. This is all very new and scary for us,so any feedback would certainly be appreciated. Donna and Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi and welcome Not a great way to meet I know but at least you have found out about this before it is too late. I started out back in 1981 with double vision and extreme light sensitivity then progressed to all the other symptoms we are so familiar with. Today I still walk You still can't tell if you see me sitting down that I have MS. I can still pass my drivers test every year. Am still married even though I am retired and at home.) I would probably be like Tom and still working if I had found LDN six years ago! My brother wasn't so lucky nor was my sister in law. If you are lucky with this disease course then it may go away completely for an extended period of time. Neither my sister in law nor my brother were that lucky, but eat well and don't over exert yourself and maybe just maybe, you will have it leave you alone. Just to hedge your bets though start on 4.5mgs of LDN. A.S.A.P. Reg. -------Original Message------- From: low dose naltrexone Date: 08/05/04 17:37:08 low dose naltrexone Subject: [low dose naltrexone] optic neuritis Hi Members,My husband had just been diagnosed with optic neuritis, but this was not his first experience with it. His brother and two first cousins have m.s. He is currently waiting for an M.R.I.We are reading everything that we can to try to decide which treatment he will opt for. The news about LDN sounds so encouraging. We were wondering if anyone else had optic neuritis as their initial symptom and how they are doing on LDN. This is all very new and scary for us,so any feedback would certainly be appreciated. Donna and Mike ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Hi Donna and Mike- Is Mike getting IV steroids to treat the optic neuritis. I've read in several medical journals that IV steroids administered immediately might arrest the MS all together. I originally presented with optic neuritis and was given only oral steroids. I now think this was a mistake. Bestaunt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 Donna and Mike - ON was my initial symptom - I went totally blind, in both eyes, in the space of about 2.5 - 3 weeks. Talk about scared. I had no clue what was going on. My MRI was " clean " so I had to have a spinal tap for my dx. It was a very trying experience. I really don't think LDN helped me recover from the ON - that just takes time and lots of it. I do think that the IV and oral steroids did more for the ON symptom recovery - although they were very hard on me, and something I hope to avoid in the future. My recovery from ON has taken a full 5 months. A long, strange trip. I now see about 98% of pre-ON normal, but my focus is much different. However everyone told me to put off new glasses for as long as I could, so I am. I am one of those who really LOVES LDN. I rejected the injectibles, and so far, am glad I did. My symptoms are in general, very mild, and LDN has resolved most of them. Although to be honest, what I really want it to do, is stop progression which I think it has. (Pre LDN I had two attacks, 40-45 days apart, since LDN - 120 days, nothing.) Good luck with your DX - and your decision on what med to take. If I can be of assistance, in any way, please feel free to email me direct. allentown@... Cinders Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2004 Report Share Posted August 7, 2004 Hi Donna and Mike- I'm glad Mike did the IV steroids. So many people are afraid of this therapy because of the side-effects. I hope the doctor discussed them with you. Mike may suffer insomnia - i did. I took ambien to help me sleep. Also, long term steroids can cause cataracts - I just had surgery on both eyes at age 48. But, I see perfectly. Potential diabetes is a worry - watch your diet - it's tough because steroids makes you very hungry. Stay positive. Bestaunt Quote Link to comment Share on other sites More sharing options...
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