We've found that I have:
- Mild arthritis with a BENIGN cyst on my spine
- Sleep apnea-especially during REM (I don't deep sleep).
- I also found out that I have two bone spurs (Achilles and bottom of my foot), but also plantar fasciitis at the same spot.
None of these things are that big of a deal to me. But they were a surprise to me nonetheless. My neurologist said that many, many of his patients with MS also have sleep apnea. I don't know the connection between the two, but obviously it adds to MS fatigue (way more than just being tired all the time). However, the treatment becomes extremely difficult when it comes to Occipital & Trigeminal neuralgia and Anesthesia Dolorosa.
My neurologist wanted to change 5 major things for me, but one is extremely expensive. The infusions are $153,000 for the first 5 and $60,000 for the next 3. 20-25% of that amount of money is beyond our means. Another medication, AMPYRA, "the walking pill," states you aren't accepted if you only have disability insurance. So, we had to wait until I could get on a new insurance with the new year.
My neurologist recommended:
- Quitting Amantadine (typically a Parkinson's medication, but also sometimes used for MS fatigue). He said, "What, are we in the 1950s?" True, my neurologist from KC received her degree early in the 1980s. But I don't necessarily think that is the reason it was her go-to for fatigue. ha. He told me it probably isn't doing ANYTHING for me and I can just stop it. My body is so SEVERELY SENSITIVE that I have to go slower than most patients when I start or stop a medication. I asked twice to confirm I'd be okay. When I first filled the prescription here the pharmacist said he'd never heard of it being used for MS fatigue. So, when my neuro said it, I figured I could trust him entirely. I should have trusted my gut and tapered down slowly. My internist agreed that I should have tapered off, but my neuro was right that it wasn't doing a whole lot for my fatigue. Some, but not enough.
- Starting Adderall for fatigue and concentration.
---> The combination of the two, especially since I'd been on the Parkinson's med for YEARS made for a storm of misery. I ONLY slept, on average, about 15 hours for the ENTIRE week for FOUR weeks. It was horrible. I finally feel like the withdrawal symptoms are done and I can move forward. It messed me up in many ways for about 1.5 months.
3. Medical marijuana. He said he's gotten SO many of his patients off many medications with it. My problem is that my pain is so severe (taking the "suicide disease," one of the most painful diseases known in the medical world, to a severity of 100 times). So, I need higher doses. My neurosurgeon, neurologist, and specialists have told me that CBD isn't enough on its own for all my diseases. I used to be against it FOR MYSELF. I didn't want the THC because it was psychoactive. But, so many of my meds are already psychoactive, synthetic, and damaging. As my body's built up a tolerance to the anti-seizure medications, some of my short term memory has come back. I can actually remember what YEAR it is!!! But, the pain has returned as well. A few of my medications are at the highest possible dose. So, I am limited in options. I've tried many different tinctures, creams, oils, salves, gummies, pills, drinks, and even suppositories (the U.S. has a lot further to go as compared to Europe. A friend in Spain had her anti-convulsant medications eat holes in her pancreas. So, she started medical marijuana suppositories and is off ALL of her medications for Trigeminal Neuralgia and Anesthesia Dolorosa.) Many CBD options do very little for me. I think if I was only using it for my depression, anxiety, or even small pains like MS pain, Fibromyalgia, or the Plantar Fasciitis & bone spurs, that the CBD or even CBD with a little THC would be enough. But it's not. So, I need high doses but it knocks me out. I can't function on it. I'm still experimenting to find the right combination without smoking or vaping. (Again, just for ME. If others choose it, I support them in whatever they and their doctor figure out.) I'm hoping I can find one that doesn't burn my throat (minor issue with some of them), decreases pain, but still leaves me able to function.
4. Start Ampyra, the "walking pill." Most of my walking issues center around PAIN, fatigue, and imbalance. But, he believes it will help me a great deal.
5. Start LEMTRADA (https://www.lemtrada.com/about/lemtrada-at-a-glance?s_mcid=ps-LT-google-BrGeneral-Lemtrada-5Things&m_id=LTDCO25364WB).
- First used for Leukemia patients, now used for MS patients who have failed 2 or more MS medications.
- Helps Leukemia, but can cause skin, blood, or thyroid cancer. More than 30% of patients in their study developed thyroid issues afterwards, but I don't know how many of those patients actually developed thyroid cancer. I'm already a high risk for thyroid cancer and my Kansas endocrinologist wanted to remove my thyroid at one point anyway. I don't know if this will disqualify me or not.
- The high risk means that I will have to be monitored MONTHLY for AT LEAST 4 YEARS after the last treatment (5 years total or more). A nurse can come to my house to do the blood work each month, though.
- 91% of patients had reactions to the infusions, so you are put on several medications before the infusions to counteract some of the possible side effects.
- Of the 14 medications for MS, this is the ONLY one that has been shown to improve SOME MS patient's meylination. One of my neurologist's patients had pain for 20 years (like me) and now has NONE.
- I was SO scared to try another MS medication because each one has caused irreversible disabilities. But I also knew I needed to because this past year nerve damage was spreading to my left side (increased pain in my face, arm, and especially hand). They explained that I've continually gone down hill since 2012 (when I got pregnant) and that we've got to stop it or at least slow it down. Since my neurologist has MS himself, he is the most knowledgeable I've met and ONLY prescribes 4 of the 14 meds. It's crazy because when I started there were only 3 medications-all injections. He is on one himself and reassured me that they will keep a close eye on me. He doesn't take pharmaceutical kick backs for putting patients on newer medications. (I believe that was what my neurologist in Topeka did since he refused to take me off Tecfidera despite the fact that I had MAJOR issues-it started the Occipital Neuralgia and Trigeminal Neuralgia, as well as the worst diarrhea every day for 7.5 months, burning, flushing, and exacerbations in the first week.)
I'm scared because of all the risks, but it's the most promising medication for MS. I also like the idea of ONLY having 5 infusions one year, 3 the next, and then being DONE. (Some have to do another 3 one or two years after, though.) It may be a tough year, but I'm excited for what may lie ahead.
I just keep telling myself that I know I need to be on something. If something goes wrong, this is the best scenario for them to figure it out early. If I get cancer, I may lose weight...so that's a bonus. haha. Really, though, some severe MS patients also get chemotherapy. So, if it's the path for me to go on to eventually find relief and healing, then so be it. Of all the options, I feel like it's the best one for me.
In the meantime I'm trying to make as many memories with my lil Kindergartener as possible, just in case things go badly. It doesn't mean I don't have faith or hope. I just hold onto true hope instead of false hope. Faith isn't about believing I can wish away everything uncomfortable with a few prayers. Granted, healing can be done by God at any time in miraculous ways, even with one simple prayer. But usually it takes a great deal of effort on my part first. It's looking forward knowing that the BEST will come as long as I turn to God and accept His will. I know there isn't an ounce of pain, or a single tear that won't be met with God's love, peace, grace, and blessings. Even if that means waiting until the next life. Either way, here goes nothing!
(P.S. The process with the Risk Evaluation and Mitigation Strategy program/team is lengthy. I don't know exactly when I will start the infusions. I'll let people know via fb when it gets closer.)
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