Wrong Diagnosis?
 

Hello Everyone,

In October 2012, I was 18, and I caught 2 different viruses. The first one made it to where it hurt to be in the light, even soft light. The second was more like the flu. Within 3 weeks of the first virus, I became legally blind. I had 20/20 vision before. In November of 2012, I was diagnosed with bilateral optic neuritis. I couldn't really see for about 3 months, even with the IV steroid and pill treatments. In May of 2013, I was given the thumbs up for being cured of my optic neuritis. I was asked to go back to the ophthalmologist in a year for another MRI and check-up. I am now 20 and I just had my check-up. She said I didn't have any new lesions on my brain scan. She didn't explain what that meant though. She also said there wasn't any MS. But the fact that she said there was still lesions still concerns me. Do I need to think about seeing another doctor or should I just be happy she said I didn't have MS? Someone please help me...

P.S. - I feel also to help you should know that later in May of 2013 I was diagnosed with Major Depression Disorder and Generalized Anxiety Disorder. I've been on 4 different anti-depressants since then, and still haven't found one that works. I'm constantly tired and sleeping. And I have no motivation to do anything. I dropped out of college, and my life consists of working and sleeping. I work as a janitor. Any answers will help please.

-happycowsfromwyo

At this point, its probably best to follow your doctor's advice. Although many of us who have had optic neuritis (ON), also have MS, ON is not diagnostic of MS.

With love, Erika

Optic neuritis can come from very low B12 levels. I suggest you get this tested. You should be at 400pg/ml as the lowest new normal. (doctors will call 200 "normal" so you have to be proactive and get the numbers).

Also since you are YOUNG, you may have the DNA mutation called MTHFR... which prevents cobalamin and folic acid from being activated to their active methyl forms. A test for this is not that expensive and may reveal much that would help you thru your coming life.
This mutation is common, and will lead to elevated homocysteine levels over time, and heart attacks/strokes in the future)

There is a rare form of optic neuritis that is made worse with cyanocobalamin (the common synthetic form of cobalamin in many vitamins). If you have this you have to AVOID cyano form always, and only use the activated types. (hydroxocobalamin, or methylcobalamin).

First of all, Welcome! As Erika said, folks with MS can get ON, but ON doesn't always mean you have MS.

I would suggest that you google and read the McDonald Diagnostic Criteria for MS. There are very specific requirements for diagnosing MS, including a certain number or type of lesions, certain types of clinical symptoms, and the separation of lesions and or episodes of symptoms over time. Make sure that you really understood what the neurologist was saying when she said "there wasn't any MS". There isn't a specific test for MS like there is for a virus or cancer or things like that. So it is possible that she was talking about not having evidence to support an MS diagnosis and you misunderstood.

In my situation, my neurologist told me that I didn't have enough lesions in the right places or the right symptoms to call what I had MS. For over two years, I thought she meant that what she saw in my MRI and my symptoms didn't look like MS. What she actually meant was that it did look very much like MS to her, but that I didn't have enough lesions or symptoms separated by enough time to meet the McDonald Criteria and give me a formal diagnosis of MS. When more lesions showed up after 2 years, she finally had enough evidence to meet the criteria and gave me the MS diagnosis that I was not expecting at all.

Welcome HappyCFW.:) I'm so sorry for you're yes/no/maybe,
almost DX of MS. That's what most of us also get, at first.:rolleyes:
As having been DX with both Anxiety and Depression, I under
-stand and empathize with you. I found Paxel and Buspar very
helpful.

Not all ADs work for everyone, but there is one out there for you.
I don't advise taking so many of them all at the same time though,
especially at your young age. They can work in reverse and make
you worse/suicidal?

You may want to see a MS specialist Neuro.

Take care and let us know how it goes for you.:hug:

Thanks!
 

Thank you everyone! Your words were the exact thing I needed to hear. :hug:

SallyC - They've switched me all 4 times. I haven't been taking 4 different medications at one time. :) This recent one is the first one to give me suicidal tendencies. Which I just got switched to a natural anti-depressant called Enlyte that hopefully will work, at least for my depression. It's nice to know there's people that understand like you do. Thank you!

TXBatman - I looked up the McDonald Diagnostic Criteria for MS. I don't know what kind of lesions I have or where they are. I have my MRI from a year ago on a disk, but I can't read it.

My doctor made it sound like I'd never have to get another MRI or anything from her tone of voice. Should I still get MRI's in the future? Should I stop worrying about anything wrong with me? Thank you for sharing your experience. :hug:

mrsD - I haven't taken vitamins since I was pregnant with my daughter at 17. I put her up for adoption, so she's no longer with me. It could very well be vitamin deficiency in my body. I'll talk to my local physician about getting tested for it. Thank you for your suggestions!

Erika - I probably am over reacting. I think it comes with worrying and over worrying about things. Thank you for your comment!

I'm sorry to hear about all that you are going through. Sometimes it takes a while for someone to be diagnosed with MS. Lesions can be caused by many things including viruses, which you had. I'm not saying that the viruses are the cause of your lesions by no means.

Keep a journal of your symptoms and if any of them increase, go back in to the neurologist to get checked again. The journal will help your doctors in diagnosing you.

ADs are such a personal thing. What works for some, doesn't work for others. Keep trying until you find one that works for you. There are different types of ADs as well and you may need to try a different type.

Keep us posted on how you are doing! Hang in there!:hug:

i understand about having depression. i've had it a long time and went thru the same thing about trying different meds. they start you on a low dose, then work up, then you have to give it wks to see if it works. if not, you start again.

however, when you find the one that works your mental world will open up.
i found journaling helped me get out my feelings. i also had cognitive therapy which really helped along with my med. i feel very well now and have for a long time. don't give up. you sound very level headed. it sounds like you monitor your condition well and work well with your dr. that's a good thing.

i would also get a copy of the mri report and start a medical file on yourself.
imho i think it's a good idea to see a neurologist, or an MS specialist, just to evaluate your mri (lesions). it never hurts to get a 2nd opinion.

and, don't let your drs tell you it's all depression, or hormones...get the answers you need. you are your own best advocate. and, take a friend or family member to the appt with you for a 2nd set of ears.

please let us know how you are.

New Symptoms
 

First off, I was thinking about my post from earlier. I forgot to mention that I've had migraine auras since I was 12. Just the auras, never the migraine. It happens at least once a month for about an hour. Also once a month, I see a little flashing dot go across my vision and I also have my vision double with an intense sensation of my eyes pulling towards my nose. The double vision only lasts a few minutes. The flashing dot lasts a few seconds.

I also get this shock in the back of my neck that causes me to have to twitch to the side. This happens a few times a month.

My newest symptom though is every time I move my eyes in any direction, I feel a tingly sensation throughout my body. Kinda like an electrical current going through my nerves. This has been going on for two days. It has made it hard to concentrate on anything and doing my job has been difficult. I feel weak and have to sit down often when I'm at work.

Anybody experience this?

i would encourage you to see your neuro about these sx's (symptoms).
if she dismisses you or doesn't seem invested in investigating this and helping you, you should try another dr.

earlier in my dx i'd get yrly mri's but after a few yrs i didn't have anymore.
i was dx'd and i wouldn't make any difference in my care.

if someone with active disease and flares are having problems then i'd think more mri's might be warranted.