multiple sclerosis is an unpredictable disease, with no real defined course, which means that the person with MS – and those who care for and depend on the person with MS – have to be aware that making plans for the future must always carry some amount of tentativeness. as i (or to be more accurate and give credit where it is due, i should say my wife) put together plans for several upcoming trips that require airplane tickets and, in one case, a weeks rental of an apartment, i cannot help but carry in the back of my head the possibility that i might find, when the date for the trip rolls around, that i am faced with having to decide if i am up to the trip or not. i have to take into account that, while i might not feel up to the trip when it is time to go, there is always the possibility – probability – that once i get to my destination, i will look back and wonder what i was so concerned about.
but – and while i try not to dwell on this, it persists in residing in the back of my mind – it might just as likely turn out that i arrive at my destination feeling as bad or worse than i feared i would. that has very rarely been the case, but nevertheless, the uncertainty is always there. i am looking at two trips upcoming that, at the moment, feel rather daunting, even though they are both trips i dearly want to be able to make. i am very thankful that there are people either accompanying me or waiting for me at the destination who are aware of my “condition,” and whole heartedly offer their support and assistance.
it has been said by other people living with multiple sclerosis that they would almost rather have cancer, since at least with cancer, as terrible a disease as it is, there are reasonably well-defined diagnostic tools, a predictable course that the disease is likely to follow, reasonably well-defined courses of action to take, and even the possibility of complete cure or remission. with MS, there are none of those things. MS is difficult to diagnose initially. and once a diagnosis is confirmed, it is difficult to define at which stage in the progression of the disease one is – is it relapsing/remitting, when symptoms can appear and disappear unpredictably, or primary progressive, when there are no new symptoms, but no remission of existing symptoms, which will continue to slowly worsen over time. secondary progressive is defined as progressive neurologic decline between acute attacks without any definite periods of remission. the lines between these stages are fuzzy. it’s all subjective, relying on the person with MS and his/her neurologist to make the determination. and even when everyone agrees with what stage the person is in, it cannot be decided with any certainty. there are no objective tests.
this uncertainty comes into play most directly when the team is trying to come up with a treatment plan. different so-called “disease-modifying agents,” are used in different stages, and a wide range of symptomatic treatments are put into play at different stages. treatments that are effective in the relapsing/remitting stage might have less effect in secondary progressive MS, and have little or no effectiveness in the primary-progressive stage. in fact, as far as the FDA is concerned, there are no approved treatments for primary progressive multiple sclerosis. new drugs usually get tested for both relapsing-remitting and primary progressive disease, but none of the treatments seem to be effective in the primary-progressive stage.
add to that the concern shared by many in the MS community that “big pharma,” and perhaps some insurance companies, make their choices on the research and development of new treatments based more on their own financial bottom line than the possible benefit to people with the disease. there are treatments – low-dose naltrexone (LDN) for example, that have shown remarkable anecdotal results in not only stopping the progression on the disease but in actual improvement of symptoms – something which no other treatment even suggests the possibility of. but LDN is very inexpensive, and therefore, if through clinical testing was proved to be effective, it is fully conceivable that both the drug companies and the insurance companies would take substantial hits to their bottom lines. people would be able to move from the “approved,” and very profitable medications onto an inexpensive medication that, in a best-case scenario, would allow the patient to move away from some or all of the medications being used to treat specific symptoms. a less medication-dependant patient, while she might be better off, is less profitable.
there is the option to buck the system – to take command of our own health and insist on (and pay for out of pocket, if we can afford it) access to some of the unproven therapies, like LDN, and risky treatments like CCSVI, more than likely against the wishes of the medical establishment and quite possibly our personal care-takers.
in the end, life itself is filled with uncertainty. i don’t in any way mean to play the “poor me,” card here, but those of us living with chronic illness – and, dare i say it, especially those of us living with multiple sclerosis – face each day with a degree more of uncertainty than others.