How Did I Get Here?

                                                                                             

That's a good question! When you're young you never think you'll have bad health. But, I did! I thought I'd always be healthy!
When I was young, I was very active! I was in diving, gymnastics, a hockey cheerleader, a figure skater, a drummer. I went to Bethel College and got my BSN.
I also was a hockey cheerleader and taught figure skating when I went to Bethel. I attended college from 1983-1987.

I had my first symptoms in 1987.

• 1987: Optic neuritis- pain in eye. Doctor said it was an early symptom of MS, but that I probably didn't have it. It improved with oral prednisone.
• 1988: Optic neuritis. No treatment as I was pregnant.
• 1991: 1st big exacerbation. Numbness/tingling in legs. Buttocks to feet. I had received Hepatitis B vaccine, 2 of 3.
• 1992: Numbness/tingling started in feet and moved upward to my trunk, chest, upper extremities. Extreme tightness, band-like feeling around my chest. Difficult to breathe. Difficult to move hands and fingers. Temperature problems. Cold felt hot, hot felt cold. I felt like I was vibrating. Electrical- type feeling down my spine into my feet and hands. Diagnosed with MS in the ER by symptoms and MRI. Many plaques on brain and spinal cord. Treatment with high dose Solumedrol. Tapered with oral steroids. Xanax for chest tightness. MRI changes. 100 % recovery.
• 1992-1993: Recurrence of same symptoms. Treated with IV steroids.
• 1993-1994: LE numbness/burning. Bladder incontinence. Slurred speech. Numbness in throat and mouth. Improved with no treatment.
• 1993: Same symptoms. Pretty bad. Treated with high dose Solumedrol, tapering prednisone. Xanax for chest tightness. Lasted 3 months. Decreased work from full time to .8 days per pay period. Recovered almost completely.
• 1993-1994: Left foot/ leg numbness. Slurred speech. No treatment. Resolved in 1 month.
• 1994: Numbness in throat and mouth. Lasted 1-2 months. Kids had chicken pox.
• 1996: LE numbness/ weakness.  Left eye optic neuritis. Resolved with oral steroids.
• 1997: LE numbness. Legs heavy. Trunk numbness. Lasted 3-4 months. Treated with oral methylprednisolone. Started on Avonex injections 1/week.
• 1998: LE numbness, wek, heavy. Became difficult to walk. Lasted 1.5 months. No treatment.
• 1999: Numbness upward movement feet to trunk and chest. Very fatigued. Difficult to breathe. Legs spasticity at night. Optic neuritis. UE throbbing pain. Started on Copaxone  injections 1/day. Hydrocodone for pain. IV and oral steroids.  Lasted 2 months.
• 2003-2004: Left ear fullness. Left sided numbness/tingling. Chest very numb with tight band-like sensation. Difficulty breathing. Right side eventually became numb, heavy. Difficulty walking. Dragging feet. Numb head. Throat and mouth numb. Bad balance. Uncoordinated. Falling over. Difficulty with eye movement. Vertigo. Dizziness. Vibration sensation throughout head and body. Severe neck pain muscles with heavy head. Buzzing. Very bad migraines. Head pressure. Extreme fatigue. Lasted 7 months. I wish I could turn these sensations off. I feel like I'm going crazy! I need help!! MRI showed multiple periventriculr lesions on cerebrum, frontal lobe, cerebellar and brain stem lesions. Xanax for chest heaviness, anxiety, sleep. Was unable to work as a R  for a year. They were nice to give me a desk job during this time. July 2004: Went to Mayo for help/second opinion. Returned to work in SICU after a year, 2005? Eventually got a day job in the Colon-Rectal Clinic.
• 2010: Had a very bad exacerbation. I had a influenza vaccine 2 weeks prior. My husband found me unconscious, sweaty, unable to move. Taken by ambulance to hospital. My labs were way abnormal. I was in metabolic/ lactic acidosis, heart failure(cardiomyopathy), encephalopathy. They thought I was having a heart attack. They thought it might be an infection. They didn't think it was my MS! I  couldn't talk or move. I was intubated and having heart arrythmias. I was hospitalized 30 days! I never was treated for an MS flare. I had to learn how to walk and swallow again. 

2011: I continued to get worse. My walking became worse. My talking became worse! I called my neurologist and the nurse said I was just anxious and to take more Ativan!(#@&*!) Angry for not listening to/believing me!! (When I was a nurse, I always listened to and believed my patients.) I again went to the Mayo. The neurologist read my MRI from when I was in the hospital, and said it was the worst case of misdiagnosis he had ever seen!! I was definitely having a brain stem flare up! Even I knew from nursing school, your brain stem regulates your atomatic functions such as your temperature, heartbeat, and breathing. They missed the brain stem lesion on the MRI!! It was to late for treatment eg. Plasmapheresis.😣 I couldn't believe it!! I was now fully disabled. Thank you very much. Only able to walk with a walker! Have severe ataxic speech, severe ataxia, bladder frequency /urgency, etc...

I worked as an RN at the VA hospital 24 years! I had to retire early on disability. I was depressed, scared, and angry. What was I going to do now at 46 years old??
To be continued..........

                                                         EDSS- Disability Score!!

                                                          I'm at 6.5!!!! Not good!!