Quote:
Originally Posted by Billylyne5
my neuro diagnosed me with SNF and then said he couldn't do anything so discharged me 😒 He has been pretty ineffectual to be honest.
I have since seen a rheumatologist and been diagnosed with sjogrens but no offer of treatment for the SFN other than the hydroxychloroquine for the sjogrens which will apparently help stop the SFN getting worse.
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This makes me so angry I could use alot of expletives right now. I have read numerous reports / studies stating that ivig has improved outcomes for some with sjorgens related sfn. Is this a big conspiracy or are some of the neuros stupid? It just has to be the cost and lack of clinical trial data.
I do understand concerns regarding risks but they seem to be far less than some other immune suppressing treatments.
Can you change neurologists?
Feel your pain - literally. My neuro has just sent me away with 6 month check ups but I have been emailing persistently to ask for Ivig based on my own research.