TIME IS OF THE ESSENCE:
Very few patients would find this acceptable. Hippocrates is quoted as saying that “If you are not your own doctor, you are a fool”. Any person who is not being helped by their doctor in ways that they expect, may therefore wish to help themselves, and the quicker the better.
Any self-help should be done as soon as possible and be an ongoing pursuit, to maximise health, well-being and quality of life by attempting to stabilise function at whatever level one can. Waiting for a diagnostic process to come to a conclusion, and then to see what therapy you may be offered by a practitioner who may have limited knowledge of, or interest in your particular neurological illness, is not a happy prospect.
If this is the situation in which you find yourself, please consider that if time and money allows, you pursue every consideration in as short a space of time as possible. Advanced MS is a truly horrific prospect. Waiting for entrenched disability before exploring a promising lead may cause tremendous heartache.
In Australia, many tests are covered by Medicare and working strategically and collaboratively with their healthcare provider a patient could potentially cover a lot of ground in a short space of time. However, if there are gaps in coverage, this is where private funding of certain tests may prove wise, and at the very least can provide a patient with enormous peace of mind, if a piece of the MS puzzle is ruled in, or discarded.
Even if disability cannot be stabilised, attempting to assemble the pieces of their own healthcare puzzle can give a person a sense that they are doing everything they can to help themselves and delay progression, particularly if they feel abandoned by the medical establishment. This can be a tremendous comfort, to know that you did your best for yourself, your loved ones and the wider society.
MS is reportedly quite commonly misdiagnosed. But even though you have MS, it doesn't mean you can't have something else. And that something else may be impacting negatively on your MS symptoms. There can be considerable overlap with many diseases and MS, but your 'label' of MS may mean that your doctor considers you a closed case and is not going to look for anything else. Many of these MS-mimicking diseases are eminently treatable if caught early, but once that therapeutic window closes, damage can be permanent, or very difficult to treat.
Time is of the essence...
PRE - DIAGNOSIS
- Once disability is established, conventional wisdom teaches that function cannot be restored
- There are presently no conventional therapies that claim to restore function
- There are few anecdotes that describe recovery from advanced MS
- Any anecdote of recovery or delay of disability cannot easily be proven, and in any case may not apply to someone else (see Every Body is Different)
- Access to specialists may take months, and follow up visits, and responses to acute events may be difficult to arrange in a timely fashion
- The MS diagnostic process may actually rely on waiting for worsening disability and entrenchment of disease before even a ‘treatable’ MS diagnosis is made
- Diagnosis may take months or years, and patients may be subject to various misdiagnoses on the way
- Even after a diagnosis of relapsing MS, early access to disease modifying drugs is not certain
- In ‘treated’ relapsing MS that is transitioning to secondary progressive MS, it will clearly be seen that conventional medicine approaches are failing the patient
- In progressive MS, there are no conventional disease modifying therapies available, so the disease is essentially left to run its course
Very few patients would find this acceptable. Hippocrates is quoted as saying that “If you are not your own doctor, you are a fool”. Any person who is not being helped by their doctor in ways that they expect, may therefore wish to help themselves, and the quicker the better.
Any self-help should be done as soon as possible and be an ongoing pursuit, to maximise health, well-being and quality of life by attempting to stabilise function at whatever level one can. Waiting for a diagnostic process to come to a conclusion, and then to see what therapy you may be offered by a practitioner who may have limited knowledge of, or interest in your particular neurological illness, is not a happy prospect.
If this is the situation in which you find yourself, please consider that if time and money allows, you pursue every consideration in as short a space of time as possible. Advanced MS is a truly horrific prospect. Waiting for entrenched disability before exploring a promising lead may cause tremendous heartache.
In Australia, many tests are covered by Medicare and working strategically and collaboratively with their healthcare provider a patient could potentially cover a lot of ground in a short space of time. However, if there are gaps in coverage, this is where private funding of certain tests may prove wise, and at the very least can provide a patient with enormous peace of mind, if a piece of the MS puzzle is ruled in, or discarded.
Even if disability cannot be stabilised, attempting to assemble the pieces of their own healthcare puzzle can give a person a sense that they are doing everything they can to help themselves and delay progression, particularly if they feel abandoned by the medical establishment. This can be a tremendous comfort, to know that you did your best for yourself, your loved ones and the wider society.
MS is reportedly quite commonly misdiagnosed. But even though you have MS, it doesn't mean you can't have something else. And that something else may be impacting negatively on your MS symptoms. There can be considerable overlap with many diseases and MS, but your 'label' of MS may mean that your doctor considers you a closed case and is not going to look for anything else. Many of these MS-mimicking diseases are eminently treatable if caught early, but once that therapeutic window closes, damage can be permanent, or very difficult to treat.
Time is of the essence...
PRE - DIAGNOSIS