Newbie, just a couple of questions

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Newbie, just a couple of questions

Postby melko321 » Wed Mar 20, 2013 9:28 am

Hello all,glad to find this forum,

I'm a 25 yrs old male diagnosed with optic neuritis of mild severity 2 weeks ago. I was immediately kept in the hospital, in the neuroophtalmology department (wrong department if you ask me,I think straight neurology would have been better),and received a medrol treatment (3days of infusion,3 of injections,and the remaining in pills).

I had an eeg scan done which came back slightly uneven, and was promised further MRI to try to find the underlying cause. Since the economic situation in my country is in chaos,I was told yesterday,after two weeks of hospitalisation, that the MRI was finally dropped (I guess I'm not urgent enough),the doctors said that they cured my eye problem (which they did,for now),and that as far as they are concerned the case is closed.

I am aware from reading online that ON is almost always a sign of a bigger neurological problem,most often MS, and the eeg points to a bigger issue.

So here are my questions:

I will,of course,do an MRI privately. In this regard I want to know if there is a difference between doing it immediately vs. waiting for a couple of weeks? It is,unfortunately,a money issue. Could the lesions,if there are any,go into remission due to corticosteroids and thus not show on an MRI and mess up the results if I wait for 2-3 weeks?

Is the eeg scan even a regular part of an MS diagnosis procedure? They didn't do that one on all the patients with ON here even though we share more or less the same symptoms.

Finally, regarding my ON, it seems to me that already the first two infusions restored the sight in my damaged eye to some 95% of its previous state,and that it is now standing there. I see almost perfectly,but can't seem to cross that final threshold into full recovery. Should I consider this to be as good of an improvement as possible or can I hold a little hope for full vision return?

Thanks to anyone who reads this mess I've written,and double thanks to anyone who responds.

Melko.
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Re: Newbie,just a couple of questions

Postby positive » Wed Mar 20, 2013 9:54 am

Well I can only respond to the ON part.
That was one of my first symptoms 16 years ago (age 27). I had an MRI shortly after that showed basically small dots of demyelination, and was told it will nerver surmount to anything so not to worry.
I was diagnosed at the age of 35 after a streesfull event (with optic neuritis and left leg weakness).
My ON went away after 2-4 weeks of being treated with prednisone each time.
I have a few floaters and maybe a tiny area of blurryness and if i move my eye arround dont notice it at all.
i did have utthoff's phenomenon(blurred vision with intolerance...drinking hot tea or a bath or hot tub) for a long time but no longer get that.(had ccsvi done last year and take vitamins D, Omega 3 and B complex).
I hope that helps a little.
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Re: Newbie,just a couple of questions

Postby jimmylegs » Wed Mar 20, 2013 4:26 pm

welcome to the forum melko. i don't know about MRI for sure, but if they're doing brain and spine looking for lesions, then lesions will still show up in a couple weeks.

i can offer assistance re nutritional approaches. for example i would ask them to test your zinc level since you are dealing with ON. make sure the seurm level is up around 18-19 umol/L (very top of the normal range). serum zinc is reduced in TTON (tobacco toxic ON) so regardless of whether you smoke, a look at zinc status could be useful.

Zinc in the eye
http://www.surveyophthalmol.com/article/0039-6257(82)90195-3/abstract
Abstract
Zinc has long been recognized as an essential constituent of various tissues. Many clinical conditions and dietary factors reduce the absorption or the biological availability of zinc, and lead to zinc deficiency which produces structural and functional alterations in many organ systems. The highest concentration of this trace element in the human body is measured in the eye, particularly in the pigment-containing components. The deficiency of zinc has a dramatic effect on ocular development especially when it occurs during early prenatal period. Zinc is required for the structure and activity of many ocular metalloenzymes. Although the exact mechanism of its molecular and cellular functions are largely unknown the essentiality of this element in the components of the eye, including the retina, choroid, cornea and lens, is well established; it is also well known that zinc deficiency causes functional impairments in various parts of the eye. Zinc related toxicities have been shown in human and animal eyes.
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Re: Newbie, just a couple of questions

Postby NHE » Wed Mar 20, 2013 9:41 pm

I was diagnosed when I developed optic neuritis 8 years after my initial symptoms. IV methylprednisolone helped to clear up my vision. However, it remained sensitive to heat, e.g., a hot day or a hot shower, for 6 months to a year afterwards. It takes time for the optic nerve to heal. In addition, for some time after the ON, I noticed a difference between the intensity of colors from one eye to the other, but I can no longer discern a difference anymore.

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Re: Newbie, just a couple of questions

Postby melko321 » Thu Mar 21, 2013 4:02 am

Thank you all for your responses,

I have already answered you but my post seems to have disappeared. Very frustrating... :/

I'll answer again in a nutshell - thank you for making me calmer about my ON, I realize now that it is a process, and I'll give it time.

Jimmylegs - thanks for the zinc tip, I'll ask my GP to organize me a zinc test if possible.

I've found out that my MRI (brain and orbit), no matter which clinic I choose, will still wait for at least 2-3 weeks, so this issue resolved itself.

I apologize to everyone for posting on an MS board without actually being diagnosed with anything yet, I hope you don't mind. My neuroophtalmologist did hint that MS is the most probable cause.

I'll come back with more info once I get it, this is a great community and it's good to have you around.
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Re: Newbie, just a couple of questions

Postby jimmylegs » Thu Mar 21, 2013 11:17 am

sounds good re testing m. no need to apologize :)
ps the posts time out unless you choose to stay logged in. it's an option in your profile settings or something (i really should know this off the top of my head)
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Re: Newbie, just a couple of questions

Postby melko321 » Thu Mar 21, 2013 11:24 pm

Well,I did write the response for too long, no wonder it logged me out.
I'll just pay more attention in the future.

As for the MRI, they are simply charging too much,unfortunately. I had no idea until I called the clinics last night that an MRI of the brain and of the orbits are two separate MRI-s, each costing their own little fortune. I'm a student, so money is short. So my strategy now is - hope it's not a tumor,schedule an MRI through official channels, not private, get it in around 6 months and in the meantime think happy thoughts... Or if I manage to collect enough money, I could throw a coin and choose one of the two tests,either the brain or the orbits.

Thank you for all your advice. I will consider myself an MS patient and adjust my life accordingly until I can confirm it or rule it out. The symptoms fit,my age fits,so if it walks like a duck and talks like a duck... You know.
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Re: Newbie, just a couple of questions

Postby NHE » Fri Mar 22, 2013 12:42 am

melko321 wrote:Well,I did write the response for too long, no wonder it logged me out.
I'll just pay more attention in the future.


Please see this post in the Forums FAQ thread to resolve this problem.

site-support-f2/topic5284-15.html#p192570
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Re: Newbie, just a couple of questions

Postby jimmylegs » Fri Mar 22, 2013 5:28 am

ouch, pricey, huh :( would you be able to get a serum zinc test? it should be far cheaper than scanning.
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Re: Newbie, just a couple of questions

Postby melko321 » Fri Mar 22, 2013 9:58 am

I'll try. In the meantime I've heard of a new clinic opening offering some discounts, I'll give them a call on monday andtry to get at least one mri... There is hope! :)
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Re: Newbie, just a couple of questions

Postby jimmylegs » Fri Mar 22, 2013 3:33 pm

nice! i have my knee scan tomorrow. it's like 500 bucks :S
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Re: Newbie, just a couple of questions

Postby melko321 » Sun Mar 24, 2013 12:32 am

500 $ for a knee scan? That's terrible. For that price they should scan it, fix it, and give you a couple of spare knees for the future...

As for my part, I've managed to negotiate a 2 for 1 deal (as if we were talking shoes, not health). I explained my case and how I don't have the money to pay for 2 MRI-s, and the clinic agreed to do an MRI of the brain and promised to try to check out the orbits as well (whether this is possible or the clinic will do anything to make money I don't know).
So D-day falls earlier than I could have hoped for - at 2 P.M. tomorrow. I wonder what they'll find... Whatever it is, I'm coming back to check with you guys for opinions since this whole neurology thing is one big gray area. Wish me luck.
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Re: Newbie, just a couple of questions

Postby jimmylegs » Sun Mar 24, 2013 6:47 pm

i agree :)

glad you have something in the works - good luck :)
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