My Story - Still waiting

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TaylorDuke
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My Story - Still waiting

Post by TaylorDuke » 3 weeks ago

Hello all!

My name is Taylor, I am 31 years old and currently in the hospital with Optic Neuritis! Here is my story:

So about 2 years I was having brain fog symptoms, and got diagnosed with anxiety and depression. Ended up getting an MRI that showed 3 T2 flair foci but neurologist wasn’t considered.

Fast forward to now and I’ve been having symptoms the whole 2 years that include: brain fog, terrible fatigue, muscle spacicity and spasms, ms hug feeling, pins and needles in feet, and a couple isolated incidents of bowel and urine incontinence. I scheduled a neurology appt 2 weeks ago that was scheduled for January 8 but 2 days I went to eye doctor with a stabbing pain in my left eye. Got sent to ER and was diagnosed with Optic Neuritis.

I got a brain MRI and the only lesions I had were 2-3 on my optic nerve but my brain was clear?! I am currently awaiting my Spine mri shortly. Blood work for Lyme , lupus and b12 all came back clear.

I am now worries that I am going to be in MS limbo if my spine comes back with no lesions. Not that I want MS but the symptoms with no diagnosis is torture.

Any thoughts? Thanks everyone! Look forward to chatting!

Snoopy
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Re: My Story - Still waiting

Post by Snoopy » 3 weeks ago

Hi TaylorDuke,

There are many conditions that can cause the symptoms you are experiencing, there is no symptom exclusive to MS including Optic Neuritis. I have had MS a very long time and have never had Optic Neuritis, my sister who does not have MS has had Optic Neuritis. Optic Neuritis can be an isolated event and does not necessarily mean MS. Brain lesions can have numerous causes, some are benign.

Did you ever have treatment for depression and anxiety? This type of diagnosis can mimic many conditions if left untreated. All of your symptoms, minus Optic Neuritis, can be caused by depression and anxiety.

I hope all goes well with your spine MRI and answers, of some sort are forthcoming.

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jimmylegs
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Re: My Story - Still waiting

Post by jimmylegs » 3 weeks ago

hi and welcome t :)

sounds super frustrating. did any particular diagnostic test results lead to the anxiety/depression dx? if so do you have details?

re ms diagnostics, ruling out a b12 issue is mainstream; it is the oldest known nutrition issue to rule out. still though, it isn't necessarily handled very well even now. can you share specifics re the b12 findings? eg both the number result and the specific units of measurement?

in addition to b12, there are also a set of less conventional blood tests you could consider having done, so see if your status aligns with an ms patient profile. if it does, you can work to move things into better alignment with healthy controls. the current challenge is navigating the gap between public health messaging, and medical clinical tests and their interpretation. the research is there but the knowledge translation into practice is less than ideal.

re the ON. is yours uni or bilateral? do you know if they are evaluating any other nutrients to confirm or rule out nutritional links? related: https://bit.ly/2BA8err

if it's any consolation, there are some avenues to consider while the docs continue to work through the process for you. i generally encourage people to pursue optimal health with at least as much energy as is devoted to the search for a dx. if in the course of your investigations no health pro has referred you to a registered dietitian for example, that might be something worth looking into further. worst case scenario, you still have a mystery on your hands but your body is in better shape to handle whatever it may be.

if you're interested in following up, there are lots of steps you can take even without a single additional test. eg journalling family and personal medical history, plus recording three days worth of 'recipe-style' diet diary info (including amounts and timing of all food, fluids, supplements, meds and typical activity levels). (recall the ON article's dx section on p105) that's the kind of info a pro dietitian can use in the event you do make an appointment with that kind of preventive professional. you can also cross check it yourself against public health diet recommendations for your age and gender. i'm not sure about all jurisdictions, but health canada has an relatively new online personalized food guide tool for individuals. lots of opportunities for action! :) and you may like to hear that i have experienced lots of your symptoms and have gotten past them via a purely nutritional approach to date. i have some lasting permanent damage from the earlier years of the learning curve (plus one recent lapse in my general diligence), but otherwise am fine. quite a few of your symptoms look very manageable.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

TaylorDuke
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Re: My Story - Still waiting

Post by TaylorDuke » 3 weeks ago

Well my Spinal mri came back clear as well! Which is good but also adds to the confusion! Following up with MS specialist on the 8th. The journey continues!

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jimmylegs
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Re: My Story - Still waiting

Post by jimmylegs » 3 weeks ago

good luck
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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NHE
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Re: My Story - Still waiting

Post by NHE » 3 weeks ago

Hi Taylor,
TaylorDuke wrote:I got a brain MRI and the only lesions I had were 2-3 on my optic nerve but my brain was clear?! I am currently awaiting my Spine mri shortly. Blood work for Lyme , lupus and b12 all came back clear.
Welcome to ThisIsMS. Do you know what your B12 test results were, usually in pg/mL? Was anything else related to B12 tested? For example, red blood cell (RBC) folate, homocysteine or methylmalonic acid (MMA).

TaylorDuke
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Re: My Story - Still waiting

Post by TaylorDuke » 3 weeks ago

Thanks for the responses all. I would have to read them more carefully when I get home to a PC. I am not sure exactly which B12 I got tested for.

Today I had to take 25 tablets of prednisone. Again tomorrow. Not fun for a person who has trouble swalllowing pills. But it could always be worse. Looking forward to my neuro appt for more confusion haha. But we all just keep chugging forward.

All that I can think about though, is: what are the odds that I make an appointment because I’m worried about potential MS symptoms, and then happen to get Optic Neuritis 2 weeks before?? It just seems impossible to me that I couldn’t have it at this point!

Take care everyone. Merry Christmas!

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Scott1
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Re: My Story - Still waiting

Post by Scott1 » 3 weeks ago

Hi,

If you have lesions on your optic nerve but the brain and spine are clear, it puts you at risk of being dismissed. That's not what should happen.

Ask if you can be checked for Neuromyelitis optica. There is a serum antibody called NMO-IgG that is present in the majority of people with this. It's not classical MS but can produce similar symptoms. The antibody does not occur in traditional MS. The treatment pattern for this is usually the same as MS but corticosteroids seem to be more effective.

Regards,

TaylorDuke
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Re: My Story - Still waiting

Post by TaylorDuke » 3 weeks ago

Thanks for the reply, Scott. I did get tested for that and am currently awaiting results.

TaylorDuke
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Posts: 5
Joined: 3 weeks ago

Re: My Story - Still waiting

Post by TaylorDuke » 1 week ago

UPDATE

MS Specialist clinically diagnosed me with RRMS but still wants to do spinal tap to confirm? I asked if the LP comes back clean what he would think and he said then we’d have to discuss whether or not to start treatment.

The saga continues...

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