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Old 02-05-2019, 02:21 PM
Stickywicket Stickywicket is offline
Junior Member
 
Join Date: Feb 2019
Posts: 7
5 yr Member
Stickywicket Stickywicket is offline
Junior Member
 
Join Date: Feb 2019
Posts: 7
5 yr Member
Default Sensory ganglionopathy

Hi I’m new here can people tell me what they get for this condition please. I had been getting ivig for six years after a variety of medications that I was trialled on failed to help my pain. Ten months ago it was stopped supposedly because of a shortage I was then trialled on some combinations of meds I had been on before again they did nothing. It was Reapplied for and it was granted for three months and I have to be totally pain free which I never was before but pain was bearable and I was able to have a life. The consultant I have(I’m in uk) is opposed to ivig his excuse is of the side effects it can cause but I think it’s down to cost. Has anyone any advice they can give me please as I am at my wits end as I know I won’t be able to cope with horrendous pain for the rest of my life. I did ask consultant what he would do if it was stopped again and I’m still waiting on an answer. I’m hoping maybe some of you are on meds that I haven’t trialled incase ivig does get stopped altogether. Thanks for taking the time to read my post.

SW xx
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