I went half blind from MS!!!

[silverbelle990]

So lets just throw this out ther MS Sucks. I was DX in 2005. I was 28 and my only got tested because my sister found out she had it. I was showing the same symptoms as her ... needless to say i was in the same boat. My first real episode that went un-DX was withmy eyes. They crossed for about a week and there was nothing anyone could do or see why. They uncrossed by themselves thank god. Found out later on when i was getting DX that was my first episode. SO fast forward from the testing and constint leg pain endless drugs to the night IT happened. I had been dealing with a headache all day at work and when i got home I was having trouble focusing and went to bed early thinking iwas having a migraine. The next morning i woke up and was completely blind in my left eye. I was freaking out crying yelling at my husband to do something...of course he couldnt i was just freaking out .... and immedicatly got ahold of my optomotrist who works with my MS doctor. I went in that morning and did all these eye exams and he was like yep your blind. Thank you I told you that thismorning. He wanted me to do steriods at my doctors office. So off i went to get steroids. 3 days later i am still blind as a bat in my left eye. My doctor offers me plasmapheresis as an option to try and get my vision back. So side note before i get any father I have tiny rolling hiding veins. This treatment is through your viens and because my veins are the worst we had to put a tube in my chest. This was an outpatient surgery and I have to tell you a tube in your chest is the worst. It is always pulling and you cant move or sleep much. After a week and a half of going to treatments every other day my tube got infected and i spent 3 days in the hosiptal. After all that --- 2 years later ---- I can see colors and shapes. I cant see letters or read, i cant see specific details like a face just the shape of a face. My doctors all say this is as good as i am going to get. I have to say that I am very depressed and hateful but i get through the day and that is all that matters. With my MS it seems to hit my eyes every couple years and I am dreading anything else with my eyes. I only have one eye left and if it gets hit with OPtic Nueritis...thats what it was called sorry....then i will be legally blind forever. I dread that day and find myself reading everything i can get my hands on now just in case.

So sorry for the rant i am just at a low right now. I went to a wedding over the weekend and danced alot and am now paying the price in killer leg pain.

I am just angry and worried and waiting for the inevitable.

[lyndacarol]

So lets just throw this out ther MS Sucks. I was DX in 2005. I was 28 and my only got tested because my sister found out she had it. I was showing the same symptoms as her ... needless to say i was in the same boat. My first real episode that went un-DX was withmy eyes. They crossed for about a week and there was nothing anyone could do or see why. They uncrossed by themselves thank god. Found out later on when i was getting DX that was my first episode. SO fast forward from the testing and constint leg pain endless drugs to the night IT happened. I had been dealing with a headache all day at work and when i got home I was having trouble focusing and went to bed early thinking iwas having a migraine. The next morning i woke up and was completely blind in my left eye. I was freaking out crying yelling at my husband to do something...of course he couldnt i was just freaking out .... and immedicatly got ahold of my optomotrist who works with my MS doctor. I went in that morning and did all these eye exams and he was like yep your blind. Thank you I told you that thismorning. He wanted me to do steriods at my doctors office. So off i went to get steroids. 3 days later i am still blind as a bat in my left eye. My doctor offers me plasmapheresis as an option to try and get my vision back. So side note before i get any father I have tiny rolling hiding veins. This treatment is through your viens and because my veins are the worst we had to put a tube in my chest. This was an outpatient surgery and I have to tell you a tube in your chest is the worst. It is always pulling and you cant move or sleep much. After a week and a half of going to treatments every other day my tube got infected and i spent 3 days in the hosiptal. After all that --- 2 years later ---- I can see colors and shapes. I cant see letters or read, i cant see specific details like a face just the shape of a face. My doctors all say this is as good as i am going to get. I have to say that I am very depressed and hateful but i get through the day and that is all that matters. With my MS it seems to hit my eyes every couple years and I am dreading anything else with my eyes. I only have one eye left and if it gets hit with OPtic Nueritis...thats what it was called sorry....then i will be legally blind forever. I dread that day and find myself reading everything i can get my hands on now just in case.

So sorry for the rant i am just at a low right now. I went to a wedding over the weekend and danced alot and am now paying the price in killer leg pain.

I am just angry and worried and waiting for the inevitable.

Welcome to ThisIsMS, silverbelle990. I am so sorry to hear of all you have been through. All of us have the need to rant at times.

You and your sister have been diagnosed with MS, but MS does not have to be the cause of every symptom that comes along. Because I am currently very interested in vitamin B12 deficiency (it is estimated that 40% of the population has a B12 deficiency and any person at any age can develop a deficiency) and because so many of your symptoms are consistent with a B12 deficiency (steroids can even make a deficiency worse), I wonder if you and your sister have ever been screened for a possible deficiency. A serum B12 test alone is not usually adequate to identify a B12 deficiency. There are many things that can skew the results: steroids will do it; taking a B vitamin supplement will do it.

If you have occasion to see any doctor for any reason, it might be worthwhile to discuss doing the initial blood tests: #1 serum B12 test, #2 serum folate test, #3 serum homocysteine test, and #4 serum methylmalonic acid test. I realize that any blood tests would be difficult for you with your tiny rolling veins, but tests might reveal a treatable problem.

I understand your vision problems (Vision disturbances can be due to a B12 deficiency.), but since you say, "find myself reading everything i can get my hands on now," I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available at your library.). These authors suggest that the B12 level should be at 1000 pg/mL or more if a patient presents with neurologic symptoms: http://b12awareness.org/could-it-be-b12 ... diagnoses/

[silverbelle990]

Thank you for the advice. I know that i have given enough blood for all the tests like a millions times and I believe he is checking my vitamin levels as I am always coming up vitamin D deficient. I am taking vitamin D pills 5000 a day. All the other tests all come back fine.

I will definintly read the book you suggested. Anything is better then MS right? well most things .....

[lyndacarol]

Thank you for the advice. I know that i have given enough blood for all the tests like a millions times and I believe he is checking my vitamin levels as I am always coming up vitamin D deficient. I am taking vitamin D pills 5000 a day. All the other tests all come back fine.

I will definintly read the book you suggested. Anything is better then MS right? well most things .....

I would be surprised if your doctor has tested for a B12 deficiency; the testing is not routinely done – I had to request mine specifically.

Blood tests can be misleading; the level of B12 in the blood can be fine – it should be above 550 pg/mL (In the US, the lab cutoffs for deficiency are set too low, usually at 200 pg/mL.), but there can still be a deficiency in the tissues. It is possible that the B12 is not being transported from the blood to the cells.

By the way, when you are having blood tests, I encourage you to request a copy of all your test results for your own files. It is not adequate to hear "fine" or "normal" from the doctor's nurse; it is better to have the actual numbers and to know if they are low or high within the standard range.

Also, since you mentioned that your sister was also diagnosed with MS, be aware that vitamin B12 deficiency runs in families. I am NOT saying that you and your sister do not have MS; I am saying that a B12 deficiency may be responsible for some of your symptoms – not all symptoms have to be due to MS.

I am pleased to hear that you will definitely read the book. The book is not big, but there is LOTS of good information in it. I agree with your last sentiment: almost anything is better than MS.… At least, a B12 deficiency should be ruled out. If there is a B12 deficiency, it is easily and inexpensively treated. If caught early, symptoms are usually reversible.

I wish you all the best.

[LR1234]

I got hit by optic neuritis five times in same eye (3 of those times I was completely blind in that one eye....always the left ) I have found rituximab to have helped a lot along with a good healthy diet.....lots of greens etc.
It's awful losing your sight:(( I hope yours continues to improve, mine is still improving 2 years later x

[silverbelle990]

You are still not 100% after 2 years? Oh my goodness. My eye dr said what i got now is what i will have forever. If anything happens to my good eye I will be on disability forever!! I have to tell you this make me want to curl into a ball and stay that way

[LR1234]

My eye is 85% now I reckon but I still have issues with superstore lighting and reading black writing on white background is patchy???I know I also have lots of tiny blind spots. Since rituxan I feel it's still improving x (amended my previous post as to be clear went blind in one eye only)

[Kronk]

My eye dr said what i got now is what i will have forever.

Dont believe it!!!

I was told that 3 months after a relapse the body stops repairing.... I am living proof that is not true. I was hit with 5 relapses in the first 6 months from diagnosis. My eyes get hit the most but I find after the initial quick repair immediately after a relapse they will continue to repair only a LOT slower. My right eye was really bad, especially when I went to the Gym or did anything physical to the point of sweating. But I now have NO issues when exercising and it is significantly better all the time. Again i didnt wake up one day with amazing vision, it took the better part of 2 years to get here, and I hope it continues.

I take a fistfull of supplements daily but i think one of the key factors is I eat a very high protein diet which increases production of IGF-1 (insulin growth factor-1) which is what the body needs to stimulate growth, and repair. I also follow Swank and eat very low saturated fat.

The body is in a constant process of destruction and rebuilding. Provide it with the building materials it needs and you may be surprized what it can do.
Best of Luck to you!

[ElliotB]

I have had a persistent vision problem, for possibly as long as 10 years and a couple of months ago, it went away. My eye doctor previous said it would not. Don't give up hope.

[silverbelle990]

Thank you everyone for telling me not to give up hope. I am sure you know how hard it is when Drs tell you something is hopeless. With MS it is very easy to feel depressed and this eye thing is really killing me. I will try to stay hopeful.