MS Patient, Ph.D.: Greetings From Limbo Land
Patients traveling the PPMS diagnostic path often simply move from one part of limbo land to another
One morning last week, I woke up to this question in my inbox courtesy of a multiple sclerosis (MS) information site that emails me frequently: "Is your MS treatment working?"
As a (possible) member of the most confusing subgroup of MS diagnoses, I had to laugh and then honestly respond, "What treatment?"
Clinicians know that primary progressive MS (PPMS) is currently without treatment, but patients are even more acutely aware. On MS patient boards, all of the patients with relapsing-remitting MS (with a smattering of secondary-progressive MS folks) chat and give tips about disease-modifying therapies—how to handle this reaction, what questions to ask about switching, how hard is it to do injections, the evolution of their brain magnetic resonance images—while the PPMSers sit on the sidelines. It's like we're all in the same boat, but some of us have to watch everyone else sort out the limited treasures.
We feel that frustration, and yes, patients on these boards make jokes (complain?) about being the red-headed stepchild of the MS research world. And it's not just because of the absence of therapies. It's also how we get to the diagnosis in the first place. First of all, we're weird, but we don't know it when we first see a neurologist for that uncooperative foot or decreasing endurance while ambulating or that weird buzz when we bend our necks. We often present with a fairly vague suite of myelopathy signs and symptoms rather than the fireworks of sudden vision impairment or a discrete bout of arm weakness or drop foot. Instead, our problems are subtle, insidious, spinal, and, it often seems, suspicious. A frequent complaint on patient forums that is especially common among patients with PPMS is that before they received a diagnosis, they heard instead that they were anxious, depressed, somaticizing, magnifying symptoms, or manifesting conversion disorder.
It probably doesn't help that we also tend to be old—a decade older at least than your average patient with MS, and sometimes more. For years, it didn't help that few researchers and clinicians seemed to realize that these two forms of MS might differ substantially and that relying on the same clinical findings or similar findings to diagnose both was doing at least one of these groups a disfavor. Under one of the recent set of guidelines, I've seen patients told that they don't have MS because they had, say, a half-dozen brain lesions and a single spinal cord lesion, their symptoms and the limitations of 1.5-T magnetic resonance imaging, radiology readings, and interpretations notwithstanding. And thanks to the fact that enhancing lesions and changes on MRI are less common in the PPMS population, we all get to wait at least a year as symptoms progress before anyone can pay serious attention to us. For some PPMSers, diagnosis can take a decade or more.
And then, when it comes, there's still nothing for us.
Patients with MS call the lag from our awareness that something's not right to a diagnosis "limbo land." It's an especially strange feeling to be in this land, aware that your possible or likely diagnosis is PPMS but knowing that even if that's confirmed, that simply puts you in another version of limbo. Patients wrestle with this issue of wanting a label, because we're human and we want a name for things, while knowing that the label is essentially without practical application and basically means that each year, you'll slide through a giant magnet, be told where the white spots are (again), and sent on your way for another annum.
I expect to dig into these issues and more in my posts for this blog, and I look forward to comments from readers. I have a lot to say from the patient side of things when it comes to this journey along the PPMS diagnostic path, and you can expect some very personal postings from me, along with interpretations of research and, well, I can't yet say "treatments," can I?
Read other MS Patient, Ph.D. blog posts.
Comments
Great post, Dr. Willingham. Defining a disease with clear diagnostic criteria is essential for the pharmaceutical industry because they have to pretty exactly define the population they are proposing to treat. But the same clear criteria can be a disaster for patients. They can be quite ill, but not fit the diagnostic guidelines and so, often, end up being told they are depressed or have conversion disorder, etc. Chronic fatigue and Lyme patients have also fought the definition battle.
Thanks, Jennie. It's true: those clear definitions are needed for trials--good point. As for being a disaster for patients, yes indeed. I know that the default to depression, somaticization, or conversion disorder is not/has not been confined to possible MS, and it does seem that the identification of non-psychiatric-disease-related processes following on some of these erroneous conclusions might make clinicians more careful.
A precaution, while waiting for confirmation of an MS diagnosis, would be to adopt the low fat diet Professor Roy Laver Swank gave to some 3,500 MS patients between 1948 and 1987. These had remarkable outcomes, (www.swankmsdiet.org). In 1999 Professor George Jelinek was diagnosed and adopted Swank's remedies, again with remarkable success, (www.overcomingms.org).
Good wishes,
Roger Gartland.
Actually there are treatment options for progressive MS patients.
I would suggest you to take a closer look on clinical study study resuts with Rituximab.
.As we can see the study primary endpoint "did not reach a statistical significance", however, the younger (up to 50 years old) subgroup benefited from the treatment.
And there is another point. If heterogenous patients with EDSS from small values up to 5 or 5.5 are recruited, those are fundamentally different patients. And unfortunately most with high EDSS may be like cance patients with metastatic disease. But nearly all MS studies recruit very heterogenous population. In this case it´s not surprise, that results are not very encouraging.
And there is a third point, less known for the public. Unfortunately the medication patent is expiring soon, there will be generic competition and for that reason there have been no interest to continue clinical trials or to get approved treatment status even if the results have been impressive in case of relapsing-remitting MS
As a former oncologist I would say that in oncology clinical trial patients are better separated and there are different studies for early and metastatic patients. Because those groups have usually fundamentally different disease and prognosis.
Also there are something common in treatment strategies.
In oncology usually the new and most powerful medication is tested first on nearly hopeless patients and it may take ten or more years before the medications starts to be used in first-line with great success.
In the field of MS treatment the way it looks similar but it may take even 20 or 30 years.
However, the patient has only one life. And if the whole damage is done, even the strongest disease-stopping medication cannot build up the demolished brain.
So, according to my opinion, it may be time to start using the strongest disease-modifying medications (especially rituximab and similar) first-line both for RRMS and progressive MS as well, for patients who are still in relatively good state without waiting and trying first less active medications.
Maybe even as a combination chemotherapy for progressive MS, the strategy which has been routine and highly successful in hematology-oncology at least for the last 40 years or more.
There are even at least one publication for successfull use of rituximab simultaneously with mitoxantrone for progressive MS patients and we can only expect how effective combination therapy may be for example, for fresh RRMS patients. But again, if we take a look to the history of cancer treatment, we can see that several untreatable cancers became treateble and response rate increased from 10 or 20 percent to 60 or 90 percent when monotherapy was changed to combination chemotherapy, usually with 3 or 4, sometimes even more medications used simultaneously.
Hello, and thanks for commenting. I appreciate your insights, but my preference is for established evidence-based medical approaches to treatment. Two issues relevant to my situation pertain here: (1) I have a "possible" diagnosis (hence the limbo land), not an established one, which brings in questions of insurance coverage, among other things; and (2) all of the neurologists I've seen, including two who specialize in MS, have told me that no treatment is available, only therapies that target symptoms.