Ok so, I started out with these strange GI issues that eventually led a very intuitive university specialist to consider a neurological disorder. I finally got in with a neurologist and MRIs were done that showed bilateral optic neuritis. The test results came back on Friday. I saw them because of my online access to my hospital records. I have since called my neurologist 5 times trying to get some sort of direction of what to do next. I am already experiencin blurred vision, bilateral side vision loss and left sided weakness. I am at my wits end with worry and aggravation. I have no idea where to turn and what to do. Any suggestions would be appreciated. I've already been in touch with my PCP who also put in a call to the neurologist on my behalf.
Thanks in advance for any information given.
Bilateral optic neuritis.
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jerrygallow
- Family Elder
- Posts: 130
- Joined: Thu Jun 20, 2013 5:18 pm
Re: Bilateral optic neuritis.
I have been there several times myself and understand your worry. However, worry is a big enemy to you right now. You need to cool down the inflammation in your body. By the way, your neuro may be the person you turn to right now, but some of us have learned that they have very few tools in their bag. Your neuro will prescribe a five day drip of solumedrol at 1g, and chances are, it will have little effect. That is all they can do. Then they will start a disease modifying drug if they believe it is MS.
Here's what I do now when I get Optic Neuritis flare ups. I take large amounts of vitamin D3 (like 10k IU per day). I take a couple table spoons of cold pressed flax seed oil. I eliminate meat during the flare up and dairy completely ( a huge part of the problem in my opinion). I also cut out eggs. I had the GI symptoms you mentioned. Bloating, pain..still do. I personally think partially digested proteins are leaking into our bloodstream. So eat much less animal protein. You can focus on healing your gut with fermented foods. Basically, cleanse your system with cooling foods...not doritos and McDonalds. You need berries, maybe grilled Salmon with olive oil, lots of greens and vegetables/fruits. And rest. Sleep, relax, and get some sun if you can. By the way, there is no intervention from your doctor that makes any difference in your long term prognosis with optic neuritis. One of the best studies showed that the Solumedrol may help you recover faster, but not more. They made me worse. You have to take care of yourself. I have enduring vision loss from my first attack when I didn't know what to do. But I have been stable for the last ten years and medication free for the last four by doing diet and exercise. Also, avoid heat. No hot showers. Good luck to you.
Here's what I do now when I get Optic Neuritis flare ups. I take large amounts of vitamin D3 (like 10k IU per day). I take a couple table spoons of cold pressed flax seed oil. I eliminate meat during the flare up and dairy completely ( a huge part of the problem in my opinion). I also cut out eggs. I had the GI symptoms you mentioned. Bloating, pain..still do. I personally think partially digested proteins are leaking into our bloodstream. So eat much less animal protein. You can focus on healing your gut with fermented foods. Basically, cleanse your system with cooling foods...not doritos and McDonalds. You need berries, maybe grilled Salmon with olive oil, lots of greens and vegetables/fruits. And rest. Sleep, relax, and get some sun if you can. By the way, there is no intervention from your doctor that makes any difference in your long term prognosis with optic neuritis. One of the best studies showed that the Solumedrol may help you recover faster, but not more. They made me worse. You have to take care of yourself. I have enduring vision loss from my first attack when I didn't know what to do. But I have been stable for the last ten years and medication free for the last four by doing diet and exercise. Also, avoid heat. No hot showers. Good luck to you.