Truth be told

Click this link for a song that I feel rings true for me currently  

 https://youtu.be/k0Sqb95vsIM

Life gets messy, but we feel like we have to keep it altogether and not let anyone see our mess.  BUT maybe we’d reach more if we allowed ourselves to be more transparent.  

Finally a diagnosis

 I saw the specialist at the IU Center of Neurology yesterday.  The doctor I was scheduled/saw is the director of the whole program and started this program many many years ago, so I am confident in his diagnosis.   

After a thorough exam and going over all the tests I had previously had, he believes that the optic neuritis is a one and done type episode.   It’s official name is Clinically Isolated Syndrome.   While there is no 100% guarantee that it won’t progress into MS, his experience suggests that I am probably in the clear.   He recommended another set of MRI’s in July of 2023 to ensure no new lesions and to take a vitamin D supplement.   And to contact if any new symptoms arise.

Optic neuritis can’t take 6-12 months to heal, and while my vision may improve, it also may stay somewhat blurry.  The doctor said there isn’t any treatment that is proven to improve the healing process, except the iv steroids that I already had.  He had great things to say about my neurologist which is comforting to know she is the best, but I already felt she was. 

I am relieved to finally have a diagnosis.  It brings peace to my mind that we have some answers and a plan. For those who read this, thank you for your thoughts and prayers.   

Overwhelmed and Exhausted

Everything seems to be crashing down this week.  

Both my girls have situations at school that make getting up and going tough.   One has to deal with a teacher that doesn’t like that she has an opinion and knows how to intellectually argue said opinion.  The other is dealing with things that were spoken against her that are not true.  Lies and dirty name calling that have made her physically sick.   It breaks my heart as mom.  

I have been in contact with the school administrators and we are working out the solution.  BUT right now I question our family’s decision to send my girls to public school.  Why didn’t I get a job and sign my oldest up for dual enrollment through a local junior college?  Deal with my youngest one’s attitude and resentment?   Why did I allow them to enter the lions den?   

I know they will face similar situations in their adult lives, and these conflicts will build them to be stronger women, right?!?    😩   But they are not grown and I want to shelter them from the pain, carry their burdens for them.  That will never change, no matter their ages.  

On top of all this, I have my appointment at the IU center of neurology next week.   I have had some eye pain in my left eye this week and a migraine like pain in my right eye that felt like it would pop out of my head.   I haven’t shared this with anyone bc no one needs one more thing on their list to think about.   But my brain is going through all that could be going wrong-blindness, brain tumor, MS, or many other unknown ailments.  I

If you read this, please just keep my family in your prayers.  Pray for strength, peace and answers.  Pray that we feel His presence in a very tangible way.  Pray that my girls treat each other with compassion as both are dealing with things that the other doesn’t understand.   Sometimes it’s easier to show kindness and compassion to friends than siblings, but that isn’t how it should be   So, just pray for my family during this time   

Summer turns into fall 2022

 Quick update post:

Saw the neurologist and my spinal tap was clear of any signs of MS.  That is awesome news.  BUT I showed some muscle weakness with my right leg.  ugh

So, since we still do not have an answer for why my vision is still blurry or the cause for my optic neuritis, she recommends that I see a specialist at the IU Center for Neurology in Indy.  My neurologist said that they will have access to tests that she doesn't and that even though it doesn't appear to be MS, there is a small percentage that have clear results.   

When I received the call to set up the appointment with the IU Center for Neurology, I was expecting a 4-6 month wait to be seen.  That wait is in fact only 5 weeks.  I asked why so soon?  Depending on the potential diagnosis and symptoms, we get some in quicker than others.  (Some are not being seen until August of 2024).  Soooooo......not sure exactly how I feel about that.  

I will update again after I see the IU doctor. 

My Summer 2022 in a blog ........

 June 2022 

I get up and have pain around my eye.  Pain when my eye moves, pain when it is touched, pain.  I figure that I must have hit it, maybe in my sleep, and caused the pain/soreness.  Only a few days later, I wake up to blurry vision.  So, let's call and see the eye doctor.  

The eye doctor comes in on his day off (bc my symptoms are enough to merit an emergency visit) and runs many tests.  The diagnosis is retrobulbar neuritis with a referral to my family doctor and neurologist for further testing.  The symptoms, diagnosis and with my age makes me a candidate for multiple sclerosis (MS).  

I see my nurse practitioner who agrees with the eye doctor's assessment, schedules an MRI and refers me to a neurologist who gets me in extremely quickly (normal wait in 4-6 weeks, I was scheduled 2 weeks).  

July 2022

After the MRI, I see the neurologist and she let me know that the MRI looks great, but she wants another set bc she really wants to figure out what is causing the vision issues.  She is leaning toward clinical isolated syndrome, which could be the start to MS or just a single event that may never happen again.  

She also sent me in for IV therapy to speed up the healing process for my vision.  I am not sure if it really helped since my vision still fluctuates between how blurry it is depending on the day.  

More MRI's that show only one spot of concern on the optic nerve.  

August 2022

The neurologist now wants to call it relapsing remitting multiple sclerosis, but she can't officially call it that without more tests.  So, let's have a lumbar puncture.  And tells me treatment options to research.

September 2022

Lumbar puncture is just as I thought, uncomfortable and wouldn't recommend it to anyone.  Now I am waiting for my next appointment with the neurologist in October.  

While waiting I am researching treatment options (if MS) and trying as I might to figure out what else it could be.  From my understanding, I do not meet the full criteria for MS, but I am also not a doctor. 

I am trying to write down any and all questions that I may have to ask when I go back.  Honestly, I wasn't prepared for the August appointment to go the way it did.  It was shocking to hear the tentative MS diagnosis, even though I knew that was an option.  So, I am trying to be more prepared.  

My pain is gone, but I am still dealing with blurry vision.  Some days it seems almost normal, other days my vision is just as blurry as the worst days.  

This post is just to document and track what is going on with my health.