Optic Neuritis and possible cause for MS

[Celeste485]

Hello Everyone. I am new here and I think I have some information that might help you and me, and all of us find what causes MS. Please, don’t think I am crazy. I came here because you are all very intelligent and serious about finding a cause and cure for ms so your determination is important here.
Four weeks ago my 13 year old daughter was diagnosed with MS. The diagnosis was made based on optic neuritis and tingling in right arm and leg before that. The MRI showed 2 lesions and so here we are. We have a swimming pool and my daughter always had burning eyes when she went swimming. She was always afraid of swimming and always screamed a lot but now she knows how to swim so she can even swim under water. Yesterday we went swimming and she had again burning eyes but she still sees stars as her optic neuritis is not gone completely. So of course I worried about that but I had to put VisineA in her eyes to get rid of the burning sensation. And then it hit me. Two weeks before she developed optic neuritis, she had a pool party and then 2 days before she was in the pool for a very short time maybe half an hour. After she came from the hospital she recovered 95% of her vision but then she again went swimming and she is been swimming since and the stars are just not going away. When she dives, she always fears about pressure in ears. Can’t you see? It has to do with the pool, diving, swimming under water and maybe the chlorine. Everyone is looking for diet but i think it has to do with the pool.
This would also explain why people who live near ocean don’t get ms as often because people living near the oceans swim in them, not in chlorinated pools, and people who live near equator also swim in ocean. Australia and New Zealand are exceptions because they are wealthier and have many swimming pools there. So I don’t think people have MS because they are from Europe or they drink milk.
I was reading about some king who had MS, I am sure being king you get to have some kind of pool and maybe that’s why he got it. I have also read that divers can develop brain lesions so maybe this is it. You dive, develop lesion and then you have a stressful situation and you get symptoms, you hop in the pool again and develop another lesion, more symptoms, and the only way to stop it is to stop swimming. Why only some people get MS and not all who swim, I don’t know but it could have to do with the mother, if the mother was in a pool or hot tub while pregnant the child maybe somehow at risk.
I believe optic neuritis strike mostly in summer months. If you got optic neuritis then what month did you get it? And do you swim? Do all of you who have MS swim/dive/use hot tubs? Or maybe my daughter doesn’t have MS?

[lyndacarol]

Welcome to ThisIsMS, Celeste.

We are sorry to hear that your 13-year-old daughter has been diagnosed with MS. We do not think you are crazy; we appreciate your willingness to share your thoughts and experiences on this disease with us. There is not yet a scientifically accepted cause for MS so we consider all possibilities expressed in this open forum. Thank you for supplying more "food for thought."

[dlynn]

Hi Celeste485,
Maybe your daughter does not have ms What did you daughters' Dr. think about the connection between chlorine and
Optic Neuritis? As a child, I either swam in a chlorinated pool or the ocean. As an adult, it was mostly the ocean. My eyes
burn in chlorine but not the ocean. I had ON in October approx. 11 yrs. ago, vision still not 100% in that eye.
I hope the best for your daughter.

[Celeste485]

Thank you both.
My daughter was diagnosed by a group of neurologist and they said she has MS. She has no pain, no damage behind the eye, her spinal tap was normal but they insisted she has MS because she had tingling in her hand and leg, has a couple of lesions on her brain and optic neuritis. She has no pain, no depression, no other problems. I didn’t mention the connection to the pool because I was knocked out by the news and until yesterday I forgot all about her problems with the ear pressure or eyes burning while in the pool. She always had problem with slitghtest changes in elevation and complained about her ears every time we were driving through the hills. Sometimes the pressure in her ear(s) would resolve quickly but sometimes she would develop sinus-like problem, mild fever, congestion and stuffy ears. It lasted usually a couple of days and her doctor always said that she had viral infection. It made sense at the time. Now however I don’t know what to think. We have appointment next month so I am going to talk to the doctor and bring the subject up for discussion.
Then there is also the thing with divers. Some develop brain lesions, some not. Some of the divers have problem with their heart called Patent Foramen Ovale. Basically air bubbles can get to arteries without going first through the lungs and when they cross the brain barrier they can cause lesions. Maybe people with MS have something like that too. So if you combine their predisposition for MS, some sensitivity or some unknown malfunction in their system and add underwater swimming, diving or even holding breath too long, then it becomes an illness not only of young people but young and athletic just like the super trained divers. How else can we explain this?

[THX1138]

B12 issues can look exactly like MS (lesions and all.) A B12 test with "normal" results is NOT sufficient to rule out B12 issues.

The book, Could It Be B12?: An Epidemic of Misdiagnoses talks a lot about this ---- You can read some of it right now for free online:

http://www.amazon.com/Could-It-Be-B12-M ... +it+be+b12


I wish your daughter the best.

THX1138

[jimmylegs]

there's a lot to the nutrient side of ms for sure. personally i can't correlate my dx with chorine exposure per se but i definitely understand the drive to try to make sense of it all. i doubt there will ever be any factor that can be universally applied to all patients. when you have a constellation of genetic and environmental factors playing in to a 'diagnosis' that is one of exclusion combined with symptoms, signs and statistical probabilities associated with various test results, it gets pretty tough to nail down one environmental factor that applies to everyone.
fyi on some of the key nutrient factors linked to ms in research (but that they by and large ignore in mainstream medical practice)
http://www.thisisms.com/forum/regimens- ... tml#p15460

[Celeste485]

Vitamin B12 deficiency would make sense in my daughter’s case because she was eating very little meat. I would cook things she liked just to get her eat some. She wouldn’t touch cereal either because she was in middle school and the pressure was on, breakfast was for babies. Lunch, only pizza from the school cafeteria. We were always fighting over this.
I am collecting now some of her last blood tests done during physical examinations and checking everything. I don’t see she ever had B12 done. She had very few blood tests done to begin with but I got a copy from her previous pediatrician and some things do bother me: her BUN/Creatinine Ratio is high (43) normal range should be 6-25. The doctor never even mentioned this to me. Her Creatinine is (0.4) and the normal range is 0.4-1.1 which makes it borderline. I am not sure what this means.
Then there is Bicarbonate-CO2 normal range is 21-31 and hers (24). A/G Ratio-Calcium hers (1.6) and normal range 1.1-2.5 and sodium hers (137) normal range is 131-150. Can anyone make anything from this? They are normal but on the low side.
We have HMO coverage and the doctors never share anything with us. Everything is always normal and it is very possible that she may not have MS but her tests in the hospital are not showing B-12 low because they would tell us. Wouldn’t they?
There is one more blood test from last year, I am going to get a copy of it next week and see what it shows. I am going to share the results here, maybe someone will be able to figure this out.
If indeed her illness is due vitamin D deficiency will the myelin repair itself? Will the symptoms go away?
I am going to buy the book from Amazon and of course I have already been giving her vitamin D supplements and making her eat liver.
As far as the chlorine goes, I am not sure about it but I have eczema on my hands and I always have it after swimming in the pool even if it’s only for few minutes and I have no breakage on my skin before entering water. My hands never heal during summer months. And all I have to do is jump in the pool only once. What would happen if some of the water would get into my body through ears, mouth or nose? Or the chlorine penetrates the skin? Just like bath salts. Most people don’t just jump in the pool and get out, they spend hours swimming and having fun and the prolonged exposure maybe is not as healthy as we think. Of course this is just hypothesis.

[want2bike]

Chlorine is a toxin. We can experience different symptoms when exposed to toxins. I have put a chlorine filter on my shower head. I also use a reverse osmosis filter on the water I drink. I try to eliminate as many of these toxins as possible because no one can say for sure which toxins are the problem. For sure if you experience problems with the pool stay away from it. Listen to your body. Your body will tell you the truth. Pay attention to your body. Dr. Bergman explains the autoimmune issue very well in his video.

[jimmylegs]

oh dear! a tough scenario.

when meat is low and gluten is high, watch out where zinc and iron are concerned as well. relevant blood tests, besides b12, would be serum zinc and serum ferritin. (low zinc levels have a strong tie in to ON, and low zinc can also impair b12 absorption/use)

re the elevated BUN. could she be dehydrated? and for the creatinine.. low protein? (which sounds consistent with the meat aspect too?)

good for you re the liver watch it with d3 supplements though. they need to be balanced with the right cofactors. how many IU of d3 are you giving her per day?

speaking of cofactors, be aware that zinc status will affect ability to absorb and use both b12 and d3.

b12, d3, ferritin and zinc are among the nutrients that should be monitored and optimized in ms, but typically aren't. as for repair, with nutrients the sooner you act the better the chance. it is possible to do permanent neurological damage through mis or malnutrition (i have)

re the eczema, you might want to look at your own zinc status for that.

here's my own write up with specific tests and targets for ms nutrition http://www.thisisms.com/forum/regimens- ... tml#p15460

the body absorbs plenty through the skin as you say. haven't seen anything in research yet re swimming and nutrient depletion, although you'd certainly have your standard loss through sweat.

[THX1138]

When I say B12 "issues," I use this word to mean not just B12 level but also problems with the body actually using the B12 that it has. Sorry for the lack of clarity.

Regarding the B12 level, the "normal" range is too low for some people. 500 or above is more like it.

I recommend the book because I don't think I can give this topic justice in a post!

_______________________________________________________

"B12 issues can look exactly like MS (lesions and all.) A B12 test with "normal" results is NOT sufficient to rule out B12 issues.

The book, Could It Be B12?: An Epidemic of Misdiagnoses talks a lot about this ---- You can read some of it right now for free online:

http://www.amazon.com/Could-It-Be-B12-M ... +it+be+b12"

[jimmylegs]

agreed - cofactors are key. zinc's a big one known boost B12 absorption, and zinc can be a trouble spot for folks who don't eat meat, and also for ms patients.

re the b12 normal range again, agree. it's baloney developed for hematological criteria only. the lower cutoff has to do with the point at which your red blood cells start to get larger. as if keeping your blood cells a particular size is the only thing b12 has to do in your body 7:S

there's an old article out there somewhere that supports the 500 pg/mL minimum for b12. I ordered it once because it was impossible to find online even with full text access. for a pmol/L target multiply by 0.738.

celeste re the docs telling you normal, these excerpts are taken from the link I sent you above:

"note that ms patients and healthy controls can typically all be described as 'normal'. the difference between patients and 'healthies' is RELATIVE deficiency, generally found within the normal range, eg low normal vs high normal."

"The first thing to understand when beginning nutrition investigations, is the unfortunate language of the lab. Specifically, the term 'normal'.
As described briefly above, the 'normal' range is often quite a broad range which in many cases includes both sick and healthy people.
There is a much smaller range within the normal range that can be described as 'optimal'."

"One example of the danger of the word 'normal' is this: recently a patient here at TIMS asked for a zinc test and was told the level was fine. When the patient asked for the number it came back 10.083 umol/L (normal range 10-20 in this case). This patient was not told that the level was suboptimal, borderline deficient, or outright deficient (which it was, if you use 11.5 - the WHO's lower cutoff level..) just that it was 'fine' - ie the computer did not red flag it because the value was within that lab's min and max setpoints."

more of this at http://www.thisisms.com/forum/regimens- ... tml#p15460

[THX1138]

jimmylegs I'm glad you're so agreeable.

_____________________ALSO_________________________________

"re the b12 normal range again, agree. it's baloney developed for hematological criteria only. the lower cutoff has to do with the point at which your red blood cells start to get larger. as if keeping your blood cells a particular size is the only thing b12 has to do in your body 7:S "

My B12 level was above the reference range, but my MCV was a little abnormal (too large.)

Allopathic docs did nothing though. Then I started reading:

http://www.amazon.com/Could-It-Be-B12-M ... +it+be+b12

Methylcobalamin sublingual did nothing.

Methylcobalamin shots and the MCV went down nicely.

[jimmylegs]

weird, what was your level? since 'normal' can vary from lab to lab...
bizarre re sublingual doing nothing. studies have that method down as equivalent to shots.

[THX1138]

MCV was somewhere between 99 and 100. After a few months or so of Methyl B12 (3x per week) it was 93 something.

The book says to go with injections because B12 issues are too important to risk it.

[jimmylegs]

sry I meant your b12 level