I need to make it clear that none of these doctors necessarily believe in ME/CFS, they treat the symptoms we experience & order testing to look for other conditions.
Ill relay my experience with my Neurologist first & add some other doctors that have been recommended to me when I am able.
These include an Endocrinologist to look at OI/POTS, connective issue disorders, diabetes related problems, adrenals etc.
And the other is a Coeliac specialist, I have been told he can do some genetic testing.
I originally saw two different Neurologists through The Alfred, through the public health system. They were very rude & arrogant toward me, suggesting I go back to my psychiatrist.
Unfortunately for them my psych believes M.E is a physical disease. I informed them of that & refused to give in until they ordered an MRI.
The trick is to stay calm & undeterred, you have a right to have these tests if you are experiencing neurological symptoms. Stand your ground!
Make sure you get a personal copy of the Radiologists report from your GP. Neuros will tell you that your test was normal even if you have lesions etc. It is worth seeing someone privately at this point, it is just as slow a process but you are more likely to be sent for further testing.
Neurologist
Dr David Prentice
Suite 8, Level 6
55 Victoria Parade
Fitzroy. VIC
Phone: 9419 1007
I have seen Dr Prentice for 3 years. He is based at St Vincents but can be seen at Shepparton & Werribee (expect to wait a year for a local appointment).
Last week it cost me $120, and I redeemed $63 back from Medicare. Your initial appointment is an assessment so it takes a lot longer & will cost more, ask his secretary. He can also be seen through the public system.
A brief history of my problems that led to me to seeing a neuro: Orthostatic Intolerance, left side facial numbness, numbness of arms/face/lips/tongue on waking.
Based on these symptoms I was able to have the initial MRI. March 2009
There were some white matter lesions so I decided to see Dr Prentice privately to have MS ruled out asap.
He started me on Topamax to try to help the symptoms & ordered another brain MRI plus also a full spinal MR & also Visual Evoked Potentials (VEP)
. August 2009
I had a violent clonic seizure in May 2010. He ordered an EEG at my local hospital which included strobe light stimulus.
Two more seizures in July 2010. Medication changed to Tegretol.
Another brain MRI was ordered & I went onto a waiting list for a hospital EEG.
I had the full week in-hospital EEG in hospital in April 2011. You stay hooked up for the entire week & have to stay near or in your bed in case of seizure. A camera records the entire time but the footage is only watched if there is an event.
I was neither sleep or food deprived to force a seizure.
Before I met with Dr Prentice last week I sent him an ICC brochure & some clinical study results. He hadnt had a much of a chance to look at it all but is getting used to using the term M.E as opposed to CFS or whatever you want to call it.
He sees other M.E patients.
I asked him about SPECT & PET scans. He said PET scans would incur a cost of approximately $1000 as they would not be covered unless you have epilepsy or cancer.
He said SPECT is not particularly well thought of by Neurologists. If they do them they are quite particular which machine they use etc.
He suggested trying GET as I am in a wheelchair but was respectful when I told him GET has been proven not to work for this disease.
I see him again in late November. I dont see him very often as there seems little he can do except try different meds for nerve pain. You need to double check these prescriptions as they are not always the first choice for M.E or OI etc.
I personally think this is a good doctor to see to rule out any other Neurological diseases & help you decide on treatment approaches. He is mild mannered & friendly.
Ill relay my experience with my Neurologist first & add some other doctors that have been recommended to me when I am able.
These include an Endocrinologist to look at OI/POTS, connective issue disorders, diabetes related problems, adrenals etc.
And the other is a Coeliac specialist, I have been told he can do some genetic testing.
I originally saw two different Neurologists through The Alfred, through the public health system. They were very rude & arrogant toward me, suggesting I go back to my psychiatrist.
Unfortunately for them my psych believes M.E is a physical disease. I informed them of that & refused to give in until they ordered an MRI.
The trick is to stay calm & undeterred, you have a right to have these tests if you are experiencing neurological symptoms. Stand your ground!
Make sure you get a personal copy of the Radiologists report from your GP. Neuros will tell you that your test was normal even if you have lesions etc. It is worth seeing someone privately at this point, it is just as slow a process but you are more likely to be sent for further testing.
Neurologist
Dr David Prentice
Suite 8, Level 6
55 Victoria Parade
Fitzroy. VIC
Phone: 9419 1007
I have seen Dr Prentice for 3 years. He is based at St Vincents but can be seen at Shepparton & Werribee (expect to wait a year for a local appointment).
Last week it cost me $120, and I redeemed $63 back from Medicare. Your initial appointment is an assessment so it takes a lot longer & will cost more, ask his secretary. He can also be seen through the public system.
A brief history of my problems that led to me to seeing a neuro: Orthostatic Intolerance, left side facial numbness, numbness of arms/face/lips/tongue on waking.
Based on these symptoms I was able to have the initial MRI. March 2009
There were some white matter lesions so I decided to see Dr Prentice privately to have MS ruled out asap.
He started me on Topamax to try to help the symptoms & ordered another brain MRI plus also a full spinal MR & also Visual Evoked Potentials (VEP)
. August 2009
I had a violent clonic seizure in May 2010. He ordered an EEG at my local hospital which included strobe light stimulus.
Two more seizures in July 2010. Medication changed to Tegretol.
Another brain MRI was ordered & I went onto a waiting list for a hospital EEG.
I had the full week in-hospital EEG in hospital in April 2011. You stay hooked up for the entire week & have to stay near or in your bed in case of seizure. A camera records the entire time but the footage is only watched if there is an event.
I was neither sleep or food deprived to force a seizure.
Before I met with Dr Prentice last week I sent him an ICC brochure & some clinical study results. He hadnt had a much of a chance to look at it all but is getting used to using the term M.E as opposed to CFS or whatever you want to call it.
He sees other M.E patients.
I asked him about SPECT & PET scans. He said PET scans would incur a cost of approximately $1000 as they would not be covered unless you have epilepsy or cancer.
He said SPECT is not particularly well thought of by Neurologists. If they do them they are quite particular which machine they use etc.
He suggested trying GET as I am in a wheelchair but was respectful when I told him GET has been proven not to work for this disease.
I see him again in late November. I dont see him very often as there seems little he can do except try different meds for nerve pain. You need to double check these prescriptions as they are not always the first choice for M.E or OI etc.
I personally think this is a good doctor to see to rule out any other Neurological diseases & help you decide on treatment approaches. He is mild mannered & friendly.
