Saw registrar neuro today as mine had no space so slotted me in with only one available. He dismissed the request for other blood tests looking at antibodies to neurons as per lizajane spreadsheets. He said that the presentation of mine isn't in keeping with neuronal antibodies. Again he said no to the lumbar puncture based on my case presentation. He also wouldn't look into steroid infusions. I already have another active autoimmune illness they could help temporarily and he still dismissed that. He explained that they don't use ivig for sfn, only cidp or gbs. Mine isn't either of these, that I agreed with. As this just isn't being used for sfn in this country then they won't look much into it. I know of 2 people in the UK receiving it for ganglionopathy diagnosed by skin biopsy. I highlighted this and as mine didn't point to ganglionopathy when I had the biopsy in Feb then again I don't fit the presentation again.
Please can anyone help advise on what more one can try to get somewhere with this? I explained the situation with my legs having shrunk significantly and he just wouldn't have it as my legs look within the realms of normal, which they do compared to severe wasting I am sure. The fact still remains they have shrunk considerably but he wouldn't have it.
He agreed to update my actual neuro on the fact it has worsened, its throughout my entire body and I'm at the Max dose of gabapentin. My actual neuro did seen like he wanted to go for an ivig application but felt it would be thrown out for all the reasons mentioned above.
The only thing I can think to do is pay for some more specific blood tests but I can't afford to pay for 20 +. Are there neuronal antibody tests more important than others?
I don't know what else anyone here can say now to help my case but I'm just so exhausted and devastated fighting to get somewhere. I basically faced another med professional shaking their head saying sorry and I can't believe that nothing more can be done here.