Almost 3 years ago I was on one of the worst disease modifying drugs for my MS, Tecfidera, and my neurologist wouldn't listen to me. He refused to take me off of it, despite the fact that I'd had two of my worst exacerbations and continued to get worse and worse. "You don't feel the positive effects until after 6 months." He ignored my new issues with pain on my left eye and face. I suffered severe malnourishment and had the worst type of flu you could imagine every single day for 7.5 months. I finally was able to quit and wondered if I should never see another neurologist again. Each time I go on a disease modifying drug, I get permanent disability and major issues. I feel like it speeds up my MS decline. If you read a lot of the information on the newer medications for MS they say scary things like, "We don't know why it works. We just know it works in a percentage of MS patients." {Thankfully I'm now with a neurologist (2, actually) who specializes in MS. She has seen a FEW like me and is okay for now just treating my symptoms.}
Nevertheless, I quit the MS medication and quit seeing that neurologist. I thought he was the worst, but I was referred to one who was even worse. Clueless. The pain in my left eye and face continued to grow worse. In fact, months later the pain was now also on top of my head. I would swell up on certain points on my head, my hair was falling out to the point of bald spots, and I had other issues we couldn't explain. Irregular heart beat, bald spots, increased anxiety, worsening MS symptoms, and no insurance off and on. I wondered if it was because of stress? Because I'd been using travel shampoo that was at least 6-7 years old? We were tight on money and I would get blessings to deal with it all, but couldn't see another doctor for quite some time. Finally I was able to get into some doctors. Dermatologist said, "Alopecia Areata," and injected my scalp with steroids. Then I felt like my eyes, especially my right eye, was going to pop out of my skull. Instead of helping, it was worse. The neurologist guessed it was because of severe malnourishment after my body rejected the Tecfidera. You can have issues even 6-12 months after the offending curse was gone from your body. Temporary, most likely, was the hope for my hair loss, but again I had no real answers for the swelling on my head and feeling like a porcupine with a hammer was after me.
The pains were still sporadic, though (not quite daily except for in the summer). My hair loss and swelling was alarming, though. I was losing the one thing I liked about my body. I never considered myself vain by any stretch of the imagination. I detest shopping and would always rather put my money into memories instead of things like clothes, handbags, or fancy cosmetics. But, once I started losing my hair, got dark spots on my face, and all kinds of other issues, I was feeling quite hideous. Nonetheless, there weren't many answers and I just kept moving forward and the pains increased in intensity and frequency.
Then the ophthalmologist figured out that it was "Occipital Neuralgia" and should go away-tight muscles. Later I went back because instead of going away it was just getting worse and now on both sides of my head. The swelling and stabbing pains were too intense. He didn't have many answers beyond glycerol injections. Eventually I was able to meet with an endocrinologist 3 hours away. There wasn't a single endocrinologist in my town and later I found out my insurance didn't cover any doctor outside of my town. Anyway, she found that after 17 years of hypothyroidism, I had moved into hyperthyroidism. I finally knew why after changing my diet closer to the word of wisdom, and experiencing weird side effects, it was because now, for the first time EVER, I needed LESS thyroid medication. I'm on HALF of my dose! Once we leveled out my medications, some of my issues went away, but the stabbing pains didn't disappear.
Eventually I found out I had Trigeminal neuralgia AND Occipital neuralgia ON BOTH SIDES. It is really rare to have TN, but even more rare to have it on both sides. Trigeminal neuralgia is called the suicide disease because 25-26% of people with TN commit suicide. It is recognized as one of the most painful diseases in the world. I'm guessing these desperate people are the ones like me who try multiple medications and instead of getting better just get worse. I'd imagine if you had it a century earlier, it would be frightening and incredibly hopeless.
I was starting to feel incredibly hopeless. But, I can't help remember my dear grandmother, whom I only ever knew with one eye. It took them many years to figure out that she had a brain tumor, they cut the nerve, and she lost her eye. I feel like she is with me at times, encouraging me to keep going, reminding me of the medical advances we have these days.
If you're the praying type, I'd LOVE prayers that:
1) The surgeries can be successful and I won't have the complications. (Minimal risks-bleeding, infection, aneurysm, and anesthesia delarosa {brain registers numbness as burning pain that doesn't go away, so then you have that AND the TN on top of it}.
2) I can avoid the permanent stimulators and pace maker thing in my head.
3) My MS can be healed or lessened.
I know I'm asking for a lot. But, recently I learned it's okay to ask. I'm okay if the answers to all are NO. But, I'm still gonna ask and HOPE.
After the surgeries are done, I will be able to start coming off the horrible medications.
OHHHHHHH, the HOPE! I might be able to:
SING again (I haven't been able to for a year because of pain)
See, read, and write like I used to
Remember simple things
Drive
Go a full 24 hours without twitching
Go outside more than 1 hr per week without major issues
Concentrate
and so much more...
BUT IF NOT, I will be okay. I will still appreciate what I have and what I can do.
<3
No comments:
Post a Comment