Personalized Treatment of Multiple Sclerosis and Disease Pathology:
Multiple sclerosis is a highly individualized disease. Everyone who has it experiences and develops MS differently, no matter the common hallmark symptoms. More times than I’d like, I’ve heard, “Oh! You have MS like Montel” or Annette Funicello, or ‘Ozzy’s kid’ or ‘Sharon’s son’ or like my aunt, cousin’s friend… ad nauseum. I’ve learned to reply, “No, I have MS like Darla does. Montel (et al) has it like he (she, they) does (do).”
People diagnosed with MS are all treated with different combinations of a wide variety of medications, and I wasn’t about to start taking a basic approach to my MS. I wasn’t going to take my neurologist’s word for any drug, and I was going to ingest or inject my preferred substances on my terms.
During our first appointment, without waiting for tests and results (we both felt my condition was 99% certain) we decided to try prednisone, a cortico-steroid, to see if it could stop the inflammation of any affected nerves and knock the harshest symptoms down. Yay, yes, please. Set up the 1st MRI and blood work.
By the way, aggressive steroid treatment sucks ass.
6 pills (all at once) first two days, 5 pills (all at once) next two days, 4 the next and so on till gone. Hot, cold, pissed, hungry, nauseated, blech, worst of all… It did nothing, NOTHING for the crazy tight corset hug, stumbling, numb, exhausted, stuttering wreck I’d become in 3 months.
First battery of tests came back positive for lesions on the thoracic and cervical spine and Lyme disease. The FUCK?!
Hazard of living in the swamp with ticks, Lyme disease and MS have many of the same symptoms, and Lyme is known to have false positives, and is a bog of idiosyncrasies of its own.
We treated that with 30 days of doxycycline, a heavy antibiotic which treatment, by the way, sucks ass. All symptoms stay wicked tight, numb and miserable and worsening.
He prescribed Flexeril, a muscle relaxing drug, to help the spasms of my intercostals (muscles between the ribs) which cause the MS hug, a result of the thoracic lesions. Percocet, a narcotic painkiller I was familiar and comfortable with, was prescribed to ease the pain associated with constant spasms. I felt like I’d done sit-ups for hours. My rib cage was changing shape, and my thighs were having the same type of spasms more often.
To be positive for MS, I needed a brain MRI to confirm lesions separate from the spinal cord. The brain scan was lit up. Ding, Ding, I have MS.
My neurologist wanted to me set up on disease modifying drugs (DMTDs or DMT) a.s.a.p. This class of drug is injected by syringe. There are several choices, all with a plethora of side effects, but with the same goal, to stop the progression of damage. I feel I should stop here to give a cursory explanation of the disease pathology of MS.
Multiple Sclerosis literally means multiple scars; the disease causes scar tissue exclusively to the central nervous system (CNS). The brain and spinal cord make up the central nervous system with a marvelous network of nerves which control and sense everything, EVERYTHING, we feel and do. These collections of nerves are known as white and grey matter. The nerves of the white matter are coated with a protective fatty sheath called myelin. It’s like the coating on an electrical cord, protecting the current running on the wires inside of it. This myelin gets destroyed during progression of the disease. And, like that electrical cord, it can get a bare spot and still work; it may spark and short out or slow and fizzle, you may not even notice. If it continues to receive damage, it can get cut completely and never work again. Enter the destroyer of myelin.
The human immune system is like a little army running around the body and destroying infectious bodies and agents. The CNS is enclosed from the rest of the body by the blood-brain-barrier (BBB). This BBB allows the exchange of essential nutrients and oxygen, but keeps everything else out, including certain drugs and antibodies. With MS, the cells of the body’s immune system breach the BBB and begin to attack the myelin during some trigger illness as diverse and mysterious as each body MS happens in. We know it is a combination of factors, but it remains difficult to decipher.
The injectable DMT drugs act as a protection to or, in some cases, as a mimic of, the myelin sheath from deterioration by the immune system. This (hopefully) slows, stops, and sometimes reverses damage. Similar to using electrical tape on the damaged electrical cord, it doesn’t ‘fix’ it, but it helps. Sometimes, though, it doesn’t help, the damage is done.
My neurologist wanted me to start on Avonex, a beta-drug injected into the muscle once a week. Often followed by a 24-48 hour flu-like hangover, this drug is also known to cause depression, and heart and liver disease.
No, thank you, that isn’t going to happen. Most of them are scary drugs administered once a week. One drug, the copolymer amino acid glatiramer acetate Copaxone doesn’t carry those side effects, but you have to inject it every day, and many people have a needle aversion. I do not. However, it does come with one frightening side effect the others do not. Immediately after injection a, 15-20 minute reaction may occur. It comes with a pounding heartbeat, difficulty breathing, anxiety, chest pains, hives, the works. It goes away without further event or damage. Oh, and if you don’t rotate the injections the injection can cause irreversible sub-cutaneous tissue damage. Yet, it has been effective at slowing the progression. For moderate to severe MS like mine, the alternative to DMT is a quickened invalidation to death, like aging 5-10 times too fast or faster.
I did my homework. For one drug, the daily and possibly heart-pounding ride Copaxone, the benefits outweighed the risks. I rejected his prescription and told him I wanted Copaxone and we set it up.
It freaked me out a little, inside. My medicine cabinet before MS consisted of aspirin, children’s Tylenol, and band-aids, I kid you not. Now I was supposed to stick a needle of some crazy concoction somewhere on my body every damn day?!
I had one very paranoid and excruciating anxiety trip one afternoon, and got the freaks out of my system. To add to my resolve, I was getting worse in the interim of getting the meds set up.
My neurologist did not want to prescribe Percocet regularly because it was a narcotic and wanted me take Neurontin, an anti-seizure medication used to treat nerve pain. It came with two different sheets of warnings from two different agencies warning me of the same conditions: behavioral or mood changes, depression, thoughts of suicide, attempt at suicide… stop right there. My mama always said, “You don’t have to tell ME twice”. And Dr. Neurosurgeon can stick that one.
Zanaflex is a class of stronger muscle relaxers indicated mostly for spinal cord injuries and multiple sclerosis and works well in combination with Flexeril to make the spasms a bit more bearable. The spasticity still affects me daily, but I’m learning to pace myself and predict effects of my efforts.
Treating myself better, sharpening up my diet and learning the ways I can exercise safely is essential, relaxation, napping, and indulgence of self rounds out the treatment I have developed so far.