Curveballs...

Thank you to everyone that has reached out making sure things were okay due to not posting a new blog for a while. This entry will be a lengthy one and will be broken into two separate entries...

Unfortunately, I have been dealing with severe neurological issues. I am going to take this time to pause discussing my CRPS journey and do a deep dive into my symptoms, care or lack there of and then the resolution. Due to my ongoing neurological impairments, please do not mind if there are any grammatical errors.

At 14 years old my vision in my right eye became blurry and I was developing double vision, it was as if my vision was split in two. Fast forward a few weeks and I had now developed a black ring that eventually closed, and I had lost all vision in my right eye. At that age it was very scary and very difficult to express what it was that was happening other than I could not see. My parents took me to multiple neurologists and ophthalmologists; it was a horrible experience. Some would say to my parents that I was lying about this and nothing was wrong with me and I remember crying and being very agitated that no one was listening to me.

My parents knew something was wrong and it took finding the right Doctor to say, "You have Optic Neuritis, your symptoms are very real and very serious and we need to treat it".

• Optic Neuritis is an inflammation of the optic nerve and can cause sudden or rapid loss of vision, often in one eye

  • Symptoms (all of which I had)

    • Vision loss in one eye

    • Pain with eye movement

    • Flashing lights

    • Central blind spot

  • Causes

    • Can be associated with multiple sclerosis

    • Autoimmune diseases

That Ophthalmologist was Dr. James Reidy. Finally, someone who cared and was going to help fix my vision. After 5 rounds of IV steroid treatments, I would go through these "Optic Neuritis" episodes 2-3 times a year until around the age of 21. Each time that my symptoms would arise, Dr. Reidy would get an IV treatment started and my visual impairment would clear up.

Between the ages of 22 - 38, I might have had 3 more episodes of Optic Neuritis which would result in again IV treatments and then I would go back to my day to day.

Fast forward to now, I am 39 years old and in March of this year, my right eye started crossing and my right eye was blurry. I had developed more head pain than I normally would during an optic neuritis episode but I did not think anything of it. I made an appointment with my new Ophthalmologist (Dr. Reidy had moved out of state) and after a thorough exam he said that I had the beginning onset of Optic Neuritis. My new Ophthalmologist then referred me to a neurologist for additional testing and for whatever reason he could not prescribe me the normal IV treatment. I had asked if I could just receive them same IV treatment as I had previously and he said that would be up to the neurologist. So I made the appointment and then asked for a script for the IV treatment, and they refused. At this point my symptoms were getting worse and I had to jump through so many hoops to find someone who would be able to prescribe it. Dr. Kim (my PCP) stepped in, orders the 5-day IV infusion treatment and I finally start to get a little relief, all while I am still waiting another 2 weeks to get into the new neurologist. March 31 comes, I meet with the neurologist, indicated that I have a history of Optic Neuritis and I just finished an infusion treatment, to which he says, "stop saying you have Optic Neuritis, I don't see that on your chart so stop saying that". I was stunned, did you really just say that? I said, "What do you mean it's not in my chart? Your facility has been treating me since I was 14, did you look it up under my maiden name?" His response was that he would have someone else look into it.

At that point I was very irritated. His solution was sending me for bloodwork and a Brain MRI with Icobrain, with no urgency, he said get it done when you can and come back in July, as he did not think anything was really wrong. So, I schedule the appointment to go over results on July 8, keeping in mind that today was March 31. I am in the middle of a severe neurological issue, and we wait until July 8 for a follow-up? WTF?

This would now be my 5th neurologist in my area that I have visited to try and figure out why, after 25 years, I am still having neurological issues. Angry and frustrated, I tried to be positive that it might clear up as it had in the past and I left for a preplanned Florida trip on April 2 thinking all is good. The next day, we go to Disney for the day, and my eye starts crossing and my head starts pounding. My eye stayed crossed for the entire day and the 10 days to follow that we were on vacation. I was popping Tylenol like candy and nothing was helping. I would cover and close my eyes, but my head would continue to pound, and my eye stayed crossed.

While away, I called to schedule the MRI on April 3 - MAY 13th was the soonest I could get in for the MRI!! I couldn't catch a break. I was also calling the neurologists office and sending messages through the patient portal letting them know that my symptoms were getting progressively worse than when they started at the beginning of March. I would get no response or the only response that I received was "sorry unfortunately until we have a diagnosis, we cannot offer a treatment plan". We get home from vacation April 12 and I immediately went for bloodwork (4/14). At this point, I was having major sensory overload issues, light sensitivity, continued eye crossing and visual impairment and debilitating head pain all on my right side. If I tried speaking to someone the pressure in my head would build and build, pounding and throbbing all while my vision was seeing triple out of my right eye.

From April 14th on I called or message the neurologists office pleading for something, any type of medication to help alleviate some of the pain and symptoms I was experiencing. I was now for the most part home bound, unable to go into my office for more than a few hours to work and I lost the ability to drive. The moment I realized I had lost my ability to drive was when I was attempting to make a right hand turn down my street and I saw 3 different street entrances in my line of vision and could not tell where to turn. I was losing my balance, my speech was becoming slurred, and I was experiencing brain fog, not being able to remember conversations, etc.

I reached out to Dr. Kim (PCP), told him about my increased symptoms and lack of communication with my neurologist's office and he sent in a prescription to help the head pain at night. I was so appreciative that he was willing to help me. Although I was not seeing any significant improvements, I was trying to remain positive.

Now my bloodwork results were starting to come in and it was telling. The long and short is the major blood test that they sent in was testing for MOGAD (Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease). This is a rare neuroinflammatory disorder where the immune system mistakenly attacks the central nervous system and is identified by the presence of MOG antibodies in the blood.

• Symptoms of MOGAD

  • Visual Impairment

  • Cognitive Impairment (inability to form words or small sentences, associating slurred speech)

  • Severe head pain

  • Loss of balance

  • Sensory overload

And my bloodwork results showed I was positive, on April 29. I waited a day and when I did not hear anything from the neurologist, I sent multiple messages and made multiple calls to the doctor's office, no response back. I did my research on this disease, and I educated myself on the long-term risks if not treated promptly. At this point, I was not only getting worse but I felt like this was the beginning of my CRPS journey all over again.

Finally, I receive a call from the doctor on May 16th, further testing is needed in order to treat and give a confirmed diagnosis ~ Spinal Tap. I was like, "Fine whatever I will go through any testing but can you give me something in the meantime please? The answer was still no. No??? You see what I tested positive for, are you serious.

Moving on - Spinal Tap was schedule for June 11, great let's just get this over with. Everything went smooth no issues, results came in within 24-48 hours. There were multiple levels off, there were signs of traumatic tap however I know that additional testing needed to be done to rule out other conditions. Yet again, I called and sent messages and nothing.

Enough was enough, I messaged Dr. Kim on June 16 and asked him if he had reviewed all of my bloodwork and spinal tap results. I also +copy and pasted into my portal with him, all of the messages I sent to the neurologist's office with no message back.

Dr. Kim did what he always does, cares for his patients. He called in another prescription for my head and also sent follow-up questions asking if neuro did this, did neuro do that... All of my responses were No. No. And No.

This next line changed everything. He said, "I think it is time to seek a higher level of care at the Cleveland Clinic." Knowing that I had an appointment with him the following week on June 23, I knew we would discuss it more and we did. Dr. Kim said "You have something going on that needs to be treated now. You don't just have CRPS and test positive for MOGAD without there being some kind of connection. I really think you should go to Cleveland Clinic." My husband and I agreed, it was time, and we need to go.

Oddly enough, the Neurologist happened to call me on June 27 to go over all my testing. Even though we knew we were moving forward with Cleveland Clinic, I thought to myself, "Wow 2 months later after you have been sitting on my MOGAD bloodwork, now you want to go over everything, okay sure." He proceeded to say "So you tested positive for MOGAD, and you need to get on a treatment plan right away. I put in a referral for you to schedule a consultation with one of my colleagues. His office will call you." I was shaking my head in disgust, and I said "Well I have done my research on this disease, and it is indicated that the next two treatment options if IV steroids aren't working is a Plasma Exchange or IVIG (intravenous immunoglobin infusion therapy)." His response "Oh no you're not sick enough for either of those treatments." Huh? Maybe I need clean my ears out. I'm not sick enough, are you f-ing kidding me? At that point, I hung up, done, over it and over that facility.

The scariest part was thinking about the financial burden with this being Out-of-Network, but my husband looked at me and said " I don't care how much it costs, you need your life back. Can you remember a time when you weren't in any pain?" I said, "No I really can't, I have felt awful for years." He said, "That's it, we are going..."

It took me a few days to track down all of my paperwork and make sure that I have all of my results, imaging, etc. in the same place for Cleveland Clinic to access. I phoned and got into the system, and they indicated I would need to wait for paperwork to come in the mail which could take about a week or so. Okay no problem, we were making progress.

A week and a half came by no paperwork, and it was now July 3. So, I thought I would call and see if there was anything they could email over. After getting transferred to the correct place, a miracle happened. She said, "As of July 1, Cleveland Clinic signed a contract with your insurance company, and everything will be In-Network now! Let's get you scheduled, can you come here for a 7am appointment on Monday, July 7?" Ummmm YESSS!

Finally, I felt a sign of hope. After making arrangements for our dog, tending to my office responsibilities, I booked a hotel room that was part of Cleveland Clinic for Sunday night and we were on our way Sunday afternoon. I had to keep my eyes closed for pretty much the whole 3 hour drive due to my eye crossing and head pain, but we made it, had a nice dinner and then off to dreamland. The only problem with that is, I was anxious and couldn't sleep. So much was racing through my mind, most of all, what if this doctor says that same thing that the other neurologists just said. My mind was a mess, and I was in so much pain and then it was time to get up.

I knew the Neurologist that I was about to see was one of the best after everything I read, but I was still scared. The time came and we walked to the facility, and it wasn't long after we checked in that we were called back. The Fellow that we met with was wonderful. She asked so many detailed, history-oriented questions that I had never experienced previously. She wanted to make sure that she had every detail possible to be able to consult with the Neurologist before he met with us. She had me go through a bunch of exercises, some of which were extremely difficult, I had a hard time understanding commands, not able to touch an object because of my eye crossing, unable to walk a straight line due to loss of balance, etc. She spent over an hour with us, and she then went and consulted with the Neurologist for about 20 minutes and then they both came in. The Neurologist did not need to ask me much of anything. After a few exchanges regarding all of my test results and the lack of care/treatment I have received (or didn't receive), he said that the Plasma Exchange is the treatment option he would recommend and that I would be admitted to the Cleveland Clinic Hospital. He said, "There's no doubt that you have MOGAD, you don't just test positive for it out of nowhere and you need to be treated." After he said that, I told him that the neurologist at home told me I wasn't sick enough for this treatment and he shook him head in disbelief.

Wow, just wow! And just like that they had me go through some eye exams and then we waited for the Fellow to come out with our paperwork for the hospital. She came out and said that the Hospital has all of my information and that I would be receiving a 7-day Plasma Exchange. My husband and I looked at each other with our minds saying "7 days..." But in the end, this is why we came to Cleveland, we came to get treated and to have a plan moving forward with this disease. The Fellow said that there was not a bed available yet but to go back to the hotel and the hospital will call you. So, we walked back, and I was very happy with the care I received from that one appointment, and it gave me hope that I could finally start to feel better. Once we got back, we each made phone calls to get things situated back at home and I would say that by 1:30 that afternoon, I received the call to come to the hospital.

Cleveland Clinic is a truly amazing and huge medical campus. Everything was so smooth after we were registered, we went right up to my room and it was not long before they had the neurology team come in to meet me and on for testing.

If you made it this far, Thank you for reading! Stay tuned for the rest of this journey!

Thank you all for the amazing support!

#crpswarrior #mogadwarrior #undefeated