This Is MS Multiple Sclerosis Community: Knowledge & Support

I know that I have seen this type of post before, but I wanted to put this out there again. My ON is really bad now and one of the worst symptoms I have lately. I have been wearing dark glasses inside because I am very light sensitive and it halps mask the vision defects from the ON. I am getting to the point where I will have serious problems going about my day if this gets any worse i do not know what I will do. It gets really bad when I am upset or when I excercise.

Does any one have any ideas on something that might help. My Neuro does not. Neither does anyone else. I am freaking out slowly watching myself go blind it seems. I need any suggestions at this point.

EYE DOC?? other fine members of the forum??

I am going to start the antibiotic S/W protocol in October hopefully. I need to convince a DR first, otherwise I will probably buy from one of those shady internet Rx places. I hope that may help, but holy Sh-- I am loosing it and I do not know what I am going to do if I do go blind from this crappy disease. At that point a BUS hit at about 60 mph would probably be nice.

G

I completely understand the feelings you are having right now. I have had two bouts with ON myself, one in each eye. What I have to say is relative to ON itself. Please remember that the type and severity of your MS will change things some.

Right now, it sounds like you are in an acute phase of ON, that is, you are having active inflammation. It will cause your vision to be a hazy mess. It will affect your central and peripheral vision, and likely color vision. The good news is that with steroid treatment the symptoms will improve more rapidly than without. If you are not currently being treated I would inquire as to why with your doctor. Assumming you have RR MS, your vision will begin to normalize when the inflammation is gone. Depending on the number of ON bouts and severity, it is possible to lose some amount of vision permanently, but studies show that the majority of cases, with steroid intervention, will resolve within 1 year to normal vision.

When you exercise, your symptoms will worsen. This is called Uthoff's Sign. Nerve conduction drops when our core temperature rises. Your vision will temporarily worsen until you cool down. This is true for any symptoms of MS, but especially noticeable and upsetting with ON.

I had this badly for at least 4 months with my last ON attack. However, for the past 4 months (knock on wood), I no longer have worse vision when working out. Also, my color vision has returned to normal.

Hang in there. Get treatment. Fight.

If you have any further questions, please ask.

Thanks Eye Doc-

I have been on solumedrol a few times before for bouts of ON. It really helped a couple of times and not so much other times. I have had it really severe in rt eye and not as bad in the left. I have what appears to be permanent damage in the left eye with a constant fog over things. I sometimes am unsure if I am having a relapse, or just worsening of existing symptoms so I do not always contact my neuro for an eval or steroids. Maybe I should this time.

I am definately keeping up the fight and I am adding the abx protocol one way or another this coming month. I am prepping with NAC and other recommended supplements right now. Hopefully I will get some relief once I start the abx and maybe a little good ol solumedrol is in order as well.

Thanks for the post.

Any other recommendations from anyone would be great.

G

Hi Grumpster,

I'm sorry to hear you're struggling...with your sight. Not an easy thing to get through.
I've had a few bouts of ON so I can kind of relate.

It' such good news you will begin antibiotics in October..yeah! Light sensitivity is a very common symptom of LD also.

I know what using steroids can do; especially with vision issues. Steroids was the only thing that stopped my nystagmus...when I was under the care of my Neuro, but

can you try to ease off using steroids? and eventually stop them?

IF you have an infectious cause to your MS; steroids is the worst thing to use. It's the bacteria's food.

from what I know - my non medical opinion-
IF you were going to a doctor who is educated in Tick-Borne Illnesses, they would stop the steriods prior to giving you abx. Kind of like a dog chasing it's tail.

Hope this helps,

sending you good thoughts,
tory

I was only on the roids for a 3-5 day IV treatments when having ON flare ups. I have not had any steroids for almost a year now.

Thanks for the input Tory. I will make a note once on the CAP.