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MS/ME info has anyone been in this position?

1 reply

meanmy3 · 14/03/2018 15:23

Hi all!
I was diagnosed with Endometriosis and adenomyosis in May 2017. Recently I was referred to CFS clinic for my symptoms which I had assumed were related to the endo. However when I went there yesterday, the specialist told me that although my symptoms definitively fit with with ME she wasn't happy to diagnose me with it until she had sent me to neurology for an MRI and ECG along with more blood tests to determine underlying issues that could be present such as MS.

My auntie has MS but noone else in my family. She said she was concerned that my issues began in at a single snap second rather that I can specifically pinpoint as opposed to most cfs sufferers who have either an infection or trauma of some kind that kicks off the fatigue.

My symptoms started in 2011 at a very specific time for no apparent reason. Am I right to be worried that she has sent me back to the go for referral for MRI etc? She mentioned she wants me to see a neurologist and that if everything comes back negative she is happy to give me an automatic diagnosis of ME.

Has anyone else been told to have an MRI for MS from the cfs clinic? I have some symptoms such as occasional slurred speech, difficulty swallowing on occasion etc along with typical cfs symptoms.

Any advice or info greatly appreciated

OP posts:
chirpyburbycheapsheep · 16/03/2018 11:31

Hi OP....when I was diagnosed with ME (many many years ago) the neurologist I saw, who worked with CFS patients at the Royal Free, sent me for MRI, nerve conductivity tests, blood tests etc before giving me the diagnosis....it's pretty standard I think as there is no test to 'rule in' ME so every thing else is has to be ruled out first....

Symptoms of all these sorts of conditions do tend to overlap so it is hard to really say for definite what is going on without all the tests etc ...ME in particular can have so many symptoms that match those of other conditions - it's a real weird one so going on symptoms alone isn't a definitive way to diagnose.

HTH

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