SUral Nerve Biopsy-May be a help.....
 

I know we've talked about this before - and that most people are really aginst it exept for severe cases where certain conditions are being looked for (that was my case)... I had one five years ago - it wasnt done by a neurolgost but a surgeon who for some reason took it out my the back of my calf - and while it showed severe neruopathy and shows exactly the type of damage ("severe peripheral neruopathy w/disporportionate involvement of large mylinated fibers; evidence of both axonal degerneration and segmental demylination - goes on for four pages...) - my doc at the time, based on combination of physial disabilty and autonomic symtoms, and biopsy results, just told me I needed to move into assisted living (I refused - I was all of 45).... I've seen two good nerolgoists over the past 5 years - one did more testing but never found underlying cause - but my current nuero, who I just saw yesterday - has asked for this test speifially beause he was about to order one himself but of ourse I have copies and already faxed back to him.....

My PN is getting worse - as is the autonomic PN - which not only affecting my guts but my heart (I'm getting cardiomopathy and already have rythm problems causing tachycardia runs that I have to continously take meds to control) - and he's truly I think intriqued and really concerned... I'm going to have another NCS/EMG in two weeks - and he's going to go over my whole history again.....

I was having IVIG last year but its on hold - they have been doing amyloidosis testing but tell me "you have all the symtoms but we cant find it "right" now... the IVIG seemed to hep me - I'm getting much more achy, tingly, and weak without it - but the other problem right now is my gut - I can get thru a whole infusion without the nausea becoming too overwhelming and its too expensive to waste a treatment.....

I'm really hoping that the biopsy may give him some clues, and also very curious as to any changes in the NCS/EMG (each one has shown progerssion of disease - which hit in '99) - so that the doc might be able to order any tests missed, etc.....

Maybe I'll be one case where the biopsy really will give them true clues!

Hi Kmeb, i really do hope this new neuro can find the cause of your problems, the neuro does sound like their going to try their best, i'll keep my fingers crossed for luck for you.
Brian :)

Kmeb,
Golly you have, and are still going, through the mill with your PN. As you know I am new here and new to PN but I just wanted to wish you luck with your new neurologist.

Thanks
 

Thanks - and I probaby should be clearer - this is my current neruo who was giving me IVIG - but is now conerned about the decline they are seeing - I did have the LizaJane spreadsheets for him when I started as a patient about a year and a half ago, wich I'm sure he reviewed and then did an NCS at the time which prompted together the IVIG... now he's going back for look for more clues at the spefiic full test result (of course the spreadsheets have "summaries" of biopsipsies, etc.) - which I think is even better - he knows - has watched me change - and is concerned - I think I'm lucky... I trust him.....:)

Wow! Sounds....
 

as if this is a 'curious' doc. Definitely a KEEPER! - j

:Head-Spin: Beats the alternatives.

Kmeb,
I'm really sorry to hear that your PN continues to worsen and I wish you the very best of luck w/ the biopsy. I hope you and your neurologist will get some answers to guide your next steps. The fact that you have a comfortable and long standing relationship w/ him and that you trust him can only help you w/ your struggles.
Best wishes
Alkymst

Kmeb,

I am also in So cal, can I ask you who your neuro is? Pm me if you want. I need a good neuro.

Thanks