I have struggled finding good doctors here and have been frustrated by the long wait (typically 4 months) just to see a nurse praticioner or physician's assistant. Then when I actually meet with doctors they say things like, "Hmmm, that is strange," "I'm sure your hormones are off, but even if I did the tests I wouldn't know what to do with the information," "His soonest follow up appointment isn't until next year," and "Your doctor didn't refer you to a MS specialist?"
I've struggled ever since I started Tecfidera (disease modifying MS drug) last year. I stopped it in November 2014, but it stayed in my system for 6 months. The strange thing is my body really freaked out after the drug should have been out of my body (they happened during the drug, but dramatically increased from May/June to Sept).
•Hair loss/balding (left)
•Swollen head (left side) painful to touch, brush, shower, lie down, etc
•Stabbing pains in face and behind eyes (esp left side)
•Sensation that bugs were constantly crawling on me
•No hearing in left ear for 7 days (worse ever since)
•Severe depression
•Increased nausea, dizziness, fatigue, pain, weakness, trouble walking
•Menstrual changes and changes in skin
•Vision bad enough that reading became extremely difficult. I also have only driven myself twice in more than four months. (Mid Sept vision, headaches, eye pain and hair loss got better. Not great, but better).
When I was born, my whole body was black from a lack of oxygen. I was 6 weeks early, had the cord wrapped around my neck multiple times and I was a 1 on the Apgar scale (10 is healthy, 0 is dead). My parents were told that most likely I'd die, but IF I DID live, I would be in a vegetative state. No walking, talking, or interacting. My doctor and dad were members of the Church of Jesus Christ of Latter-Day Saints and blessed me using the power of the priesthood. For three days all I did was open and close my hands. I did move up on the Apgar, but wasn't responsive in many ways. And then I completely changed and the doctor still calls me a miracle baby. I had no problems until right before I turned 19 (not related to traumatic birth). Fast forward to these days and I've wondered if I'm simply destined to be in a vegetative state. I like vegetables, but don't want to be one.
I was frustrated that there was no endocrinologist in the whole town, the neurologist 1.5 hrs away had no clue what he was talking about (left the office three times with his computer and I'd ask him to clarify his {incorrect} statement but he was adamant that his questions/statements were legit as he back pedaled through half of them. He wasn't trying to "reinvent the wheel," but he questioned the Mayo Clinic and all other neurologists. It was my fault after all since I had changed to a new one (him). If the tests all come back negative (and MRI results), then I would have to go on Capaxone. Maybe another one they give to Leukemia patients since my body had rejected two different meds in seperate classes. Oh, and his next available follow up appointment wasn't until next year. I could meet with a nurse practicioner in 3-4 months. He spent about 10 minutes with me and refused to discuss NOT being on disease modifying MS meds, or treat my symptoms like fatigue). My last neurologist put me on Tecfidera. Within one week I had the worst exacerbation in my life. He was sure it wasn't related. The side effects were horrible. After I went on my first MS med (Betaseron injections I gave myself), I also had a bad exacerbation and have struggled walking ever since (never had a prob before). But with Tecfidera everything was many times worse (fatigue, dizziness, nausea, pain, walking, weakness, memory, etc). Having diarrhea 5-6 times a day every day for 7 months (1 week on another med for allergies brought it down to 3 times a day but then it went back to bad. I was on the drug for 7.5 months but had bad side effects longer than that).
I knew MS doesn't cause hair loss, just like cancer doesn't cause loss. It's the meds. For a while the best guess for my new issues was a pituitary tumor, but when that and a few other things were ruled out I began suspecting a correlation between the Tecfidera and all my changes. My hair had been thinning out throughout the time I took the MS med. Sure, others didn't report it as a side effect, but it is a new drug. If there is a side effect to any medication, my body will tell you.
Both neurologists refused to see a correlation. One laughed when I said I didn't want to try another disease modifying drug, as well. It was basically said that I'd not get the help I need when I had another exacerbation (high dose steroids) if I didn't follow instructions. MS patients go on a MS drug. Fit in this box.
I was frustrated, depressed and hopeless. I had tried so much to make my health better. No sugar for 11+ weeks. Lots of prayers. More vegetables. Less processed foods. I cried because I WANT to eat a diet of little to no processed foods or sugars. But that requires an ability to cook, shop, and prepare food.
In time I realized that while Satan may want me to be in a vegetative state (figuratively or literally), God doesn't. I had already embraced the idea of how it would be okay if I went bald. A friend who had gone through hair loss gave me tremendous hope and peace. Plus, I decided I'd never have to do my hair and would save money (no shampoo, conditioner and less shower time). I'd already dealt with the fear of losing my vision, hearing, walking, Husband, home, car, possessions, being homebound, etc. (Thankfully I've been spared from most). Being bedridden and/or having my cognition decline so drastically that I lose myself were a few new fears of mine. I've had times in the past 17 years where I'm conscious but can't see, hear, remember basic things, or talk. It is frustrating. What if that became my new normal? How many exacerbations or MS meds would it take?
But then I decided to have hope instead. I didn't feel it much, but I renewed my conviction to pray daily for it. I decided to believe in another miracle, BUT IF NOT I'd move forward in hope that it would be okay no matter what happens. When I refused to embrace Satan's plan for my life, looking down, focusing only inward, and wanting to give up, a shift occurred. Hope was restored. I again decided that whatever happens is the BEST for me eternally.
THEN I met with two neurologists 3 hrs away at a university medical facility. Instead of 10 minutes for the appointment, I was there for two hours. I had written out a 3 page summary of my history and went in with little expectations. The doctors were shocked at how bad my neurologists have been. Before I could even suggest my desires for treatment, the MS specialist said she had worked with a FEW patients like me (get much worse with disease modifying drugs). Her suggestion was to not go on any MS drug, have regular scans, and see how it goes. She then put me on a medication they often give to people with the flu. It helps with fatigue, range of motion and balances chemicals (neurotransmitters). She also guessed that my hair loss IS related to the medication. She explained that I was severely malnourished for too long and even though the offending culprit has left my body, my hair was still showing the negative impact. Hair cycles every 6-12 months. She guesses that some things will be permanent (optic neuritis-stabbing pains in and around eyes), but the hair loss may not be permanent.
My first week on the new med I had nausea, worsening migraines, insomnia, and shook a lot! But I did notice a tiny improvement in my fatigue. Lately the shaking has dramatically decreased, nausea is bearable and the headaches are better along with Mgrain from Young Living.
Now I am getting even more energy. I don't expect it to fix everything or make me a marathon runner. But if I can go outside TWICE in a week, play with my daughter easily, do a load of laundry and dishes once...it would be a first in years for me. But if not, I'm just glad for the little improvements and subsiding side effects.
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