[JoannaP79]

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.

[northerngal]

I'm not sure what your "other active immune illness" is, but would it make sense to seek treatment for this and POSSIBLY that would help the neuropathy?
It might be easier to get treatment for a confirmed immune disorder.

[JoannaP79]

Originally Posted by northerngal

I'm not sure what your "other active immune illness" is, but would it make sense to seek treatment for this and POSSIBLY that would help the neuropathy?
It might be easier to get treatment for a confirmed immune disorder.

I have a rheumatological condition called spondylitis. They have given me treatment for this which is called enbrel. The big problem is that there have been cases of enbrel enduced neuropathy in some people using it, also multiple sclerosis. The risk is therefore huge for me. If I didn't already have full body sfn I would just take it without question.

[zkrp01]

Originally Posted by JoannaP79

I have a rheumatological condition called spondylitis. They have given me treatment for this which is called enbrel. The big problem is that there have been cases of enbrel enduced neuropathy in some people using it, also multiple sclerosis. The risk is therefore huge for me. If I didn't already have full body sfn I would just take it without question.

I know how much desperation can be generated by wasting muscles. I try to explain how PN is a great teacher of patience. your strong need to be moving forward while the Drs. say that the symptoms don't fit.AAARRRGGGG!!! I also take statins that are bad for PN but my numbers go up when I quit them. My Dr said that a heart attack took priority over any PN issues. Try to take solace as you might be in an acute phase that will stop the wasting when the acute phase is done. That is my hope for you and that you will start to see a turnaround soon. Ken in Texas.

[baba222]

So sorry about this.
Hoping some wise folks can come up with more ideas for you.

[stillHoping]

Originally Posted by JoannaP79

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?

If you consider paying for the tests check the Oxford labs http://www.ouh.nhs.uk/immunology/dia...mmunology.aspx
some of the tests there are cheaper than in Mayo.

[JoannaP79]

Originally Posted by zkrp01

I know how much desperation can be generated by wasting muscles. I try to explain how PN is a great teacher of patience. your strong need to be moving forward while the Drs. say that the symptoms don't fit.AAARRRGGGG!!! I also take statins that are bad for PN but my numbers go up when I quit them. My Dr said that a heart attack took priority over any PN issues. Try to take solace as you might be in an acute phase that will stop the wasting when the acute phase is done. That is my hope for you and that you will start to see a turnaround soon. Ken in Texas.

Thanks Ken. I see you are in one of those predicaments also and I understand exactly how hard it must be to make that decision - but you obviously have taken the best choice available to you. Thanks as always for responding. I really hope it is an acute phase and will calm down soon.

[JoannaP79]

Originally Posted by stillHoping

If you consider paying for the tests check the Oxford labs http://www.ouh.nhs.uk/immunology/dia...mmunology.aspx
some of the tests there are cheaper than in Mayo.

Thank you Baba for the kind reply. Its horrible to know others have this horrible horrible condition but also a comfort to be able to speak with others who understand.

Still hoping, this is so helpful, thankyou. I am going to contact them first thing Monday. This is much cheaper than the quotes from a private company I found.