September 23, 2014 at 8:19 am #731londongirlParticipant
i am new here. Am 38 years and have recently been diagnosed with POTS and diagnosed with EDS back in 2007. I was doing pretty well till the POTS started after a yoga holiday in India and since then have been dizzy, constant headache etc….Also diagnosed with hashimotos in Jan 2014.
The neurologist had already done a brain MRI and neck MRI which was all normal. he now wants an MRI with dye injected to check for cerebrospinal fluid leakage. I am worried about the dye. I really don’t like having things injected into me. Is this the only way to diagnose and check the fluid?
Thanking you for any adviseOctober 1, 2014 at 7:43 am #5045BarbaraParticipant
STOP, don’t let them do anything invasive, i.e. NO LUMBAR PUNCTURES, NO DYES INJECTED, at least until they’ve checked and ruled out EVERY other medical sign – even then, I’d NEVER have a lumbar puncture – FAR TOO RISKY and can SEVERELY WORSEN your condition. I just thought I’d mention that at this point because it is often used to measure the cerebrospinal fluid pressure, to try and guage intracranial pressure.
Let’s face it, in all of us there is a ’cause’ for why our body is malfunctioning, something isn’t normal and we need to find out what it is, so that we can address it and get out bodies back to normal function. It’s unfortunate when the medical ‘sign’ is subtle, as is often the case in us.
If it were me, I’d be asking why he suspects a leak if the MRI has come back as normal. I would be suspicious of the ‘all normal’ report on the MRI and would request electronic copies of it, along with copies of your medical records. I am saying this because many of us get the ‘all normal’ report when, in reality, all is not normal, there are many subtle (therefore easily missed) signs.
Dr Diana says that the symptoms for low cerebrospinal fluid pressure are similar to those in high cerebro spinal fluid pressure, so it’s easy to confuse. Unless the low pressure is blatant, or you personally suspect a leak, I would be asking your neurologist to check for subtle signs of high pressure, e.g. partially empty sella, low lying cerebellar tonsils, collection of fluid above the brain, swollen optic disk, BP readings that are suggestive of high pressure etc and get these ruled out WELL BEFORE any test that is invasive to the body!
(UK)December 4, 2014 at 2:31 am #5135VioletParticipant
he now wants an MRI with dye injected to check for cerebrospinal fluid leakage. I am worried about the dye. I really don’t like having things injected into me. Is this the only way to diagnose and check the fluid?
I don’t like chemicals but I would let them inject dye if it helps diagnosis. I read up on dyes and there are a few types. I would read about whichever dye they plan to use, if you proceed with it.December 4, 2014 at 10:41 am #5137BarbaraParticipant
Good advice Violet, find out what particular dye they intend to use first and research it. All I know is that some chemicals they inject you with for MRI’s, can bring their own set of side effects, sometimes much later on in life, so you need to be informed, so you can assess the risk.
Another thought, what makes them think you have a CSF leak, have you had fluid from ears, eyes, or nose, for example ? If so and, if you can obtain a sterile swab to collect it on, they can test it, to see if it is CSF, without having to undergo the rigmarole.
(UK)April 29, 2015 at 1:02 pm #5466spdsk8trgrlParticipant
Did you get the myelogram done? Get any results? I’m currently getting scheduled for one. Suspect CSF leak, all low pressure symptoms, nothing on MRI, lumbar puncture results normal. Just curious about your experience.
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