Retinitis Pigmentosa Support Group

I started using msm drops along with my vitamins two weeks ago. Im happily surprised by the results and wondering if others with rp have experience with them.

My acuity has gone from 20/60 to 20/40 in my left eye. My right eye has problems, likely due to a mass of floaters, that is clearing up. It too has better acuity. I know it's crazy, but my eyes focus quicker, adjust faster to changes in light and I have less issues with glare. Granted, I had really bad eyes to begin with and they are far from perfect now, but I am amazed by the changes in a short period of Time. I even feel llike there might be some improvement in my peripheral vision. It is harder to test that.

Are others using it? What have your results been?

If looking for the drops...I found them on amazon for $15

Hi Zeeff, I notice that this is your first post. Could you tell us a little about yourself? How long you've had RP, if you've had any genetic research or testing done to see what type, etc.

As far as MSM is concerned, I had never heard of it. None of it's claims seem to have anything to do with RP. What has your low-vision specialist said about it?

I'm 32 and have known about my rp since I was 5. My mother has it, so I was tested early. Tests have been done, but they can't figure out what type or even if it dominant or recessive. It skipped my grandmother, but shows every other sign of being Dom.

At this point I still have fairly good peripheral vision... It is about 70 degrees in each eye. I'm still driving, but really trying to look at any possibilities for delaying progression as much as possible. I've got two little ones who really put more perspective on the timeline of this disease.

Right now I'm combining vitamin therapy with the msm drops and nac drops. I'm looking into Micro current stimulation. I moved a few years ago, and no longer have a great doctor. The retinal specialist I see has okayed my program, but doesn't offer much else. I've never really sensed a lot mor than hope for the future from doctors. I want to do what I can, however fruitless 90 percent of it is

In the past 2 years I have experienced improvements in many aspects of my vision. Tests show better acuity and my visual field has stayed the same since 4 years ago. Personal bias says that although I may not have a larger visual field, Ii am aware of more things outside of what I see clearly. I remember sitting in the car with my husband and looking at the road. I could see his nose and lips, and it was bugging the heck out of me. I hadn't been able to see it in so long and now it was something extra to pay attention to. The same thing now, there seem to be so many more things to look at. My eyes don't know what to do with themselves.

maybe I'm crazy.

I don't know about most people, but my rp has a lot more symptoms than peripheral. I really think these drops have helped with some of these and time will tell with others

It's great to have you aboard, thanks for the introduction. Feel free to dig around and see what everyone has to say around here, it's a good group of folks.

Your regimen looks very disciplined! I've always been suspicious of products with undocumented claims. My suspicion isn't always fair, as I believe there is a lot to know outside of traditional western medicine. Unfortunately, there are also a lot of beliefs with no basis in any sort of reality.

I'm going to take a closer look at MSM since I too have symptoms that don't fit the classic definition of RP. My brother has been diagnosed with a cone dystrophy. I find it odd that two brothers with genetic defects have *different* genetic defects.

The description of your visual field is also interesting. My doctor referred to my issue as a "central scotoma." I can see thing in my far periphery. In fact, my lower periphery is better than my central vision. The problem is that 1) there's a blind band between the two and 2) the brain really can't do things like read with the far periphery.

Interesting... re your brothers symptoms similar to yours?

I have an open minded, skeptical, determined outlook. There are too many variations and not enough research to say something cannot be done to halt it.

I cannot find any side effects to these msm drops and I have been quite amazed by the results. I was hoping to get other honest reviews, but it is difficult to know what to believe over the web

Are you aware of a way to find a good specialist. I've been disappointed in my previous attempts and gave up

Where do you live, Zee?

Charlotte nc

My brother's visual field isn't a "donut", it's just a random mish-mash of blind spots. Other than that, we have very similar symptoms. We used to compare visual problems before either of us was diagnosed.

As far as a specialist goes, finding one at all can be tricky, finding one you like personally can be near impossible. If you can find one that can acknowledge and properly track your progression, and when necessary deal assertively with the SSA and any private insurance you may have, you'll be in good shape.

Zee, MSM i.e. Mehtylsulfonyl Methane is organic sulfur and and essential for physical activities and development. It also came to know that , though many companies claims that they derive it naturally from palm, But it is prepare from the action of residual paper pulp and sulphuric acid reaction.So I think it may be harmful with prolong use or person having sensitivity of sulfur. So be careful.

This is true, I don't think any of the drops are made any other way. No toxicity has been found in the drops or other forms of msm. It is considered safe for long term use in all that I have read, except in cases where there is a sulphur sensitivity. Since msm found naturally in foods is so easily destroyed through processing msm is considered a good supplement for most diets

Where have you read about long term effects? Do you have a link?

Post edited by: monochrome, at: 04/05/2012 09:27 AM