advertisement
 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 10-15-2016, 10:57 PM #6
en bloc's Avatar
en bloc en bloc is offline
Senior Member
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
en bloc en bloc is offline
Senior Member
en bloc's Avatar
 
Join Date: Feb 2011
Location: Shenandoah Mountains, VA
Posts: 1,250
10 yr Member
Default

Thanks for the update.

I felt certain this neuro would change her tune after learning of your Sjogren's Dx...and she did to some degree.

However, her fear of biologics/treatments may cost you in the end.

IVIG is KNOWN to help autoimmune based neuropathy/SFN and tons of documentation on this subject. The guidelines for Scotland use of IVIg is 4+ years old...and likely has been updated since that time. It is definitely worth inquiring about this. However, they typically don't approve such a treatment with 'clinical' only Dx...and would likely require confirmed biopsy showing SFN.

There is also plenty of documentation for use of immunosuppression in this type of condition...with positive results. Cellcept would be worth considering. Doing nothing will guarantee further progression...so trying something is worth at least slowing this progression. I don't understand her comments basically saying you can't be helped at this stage...that's an assumption with no logical documentation...especially since these meds have a history of helping. Otherwise, no one would be getting treated across the world...and that is just not the case. We ARE getting treated and it's helping. There is some damage that becomes permanent with Sjogren's, but certainly not all, as she seems to think. O hope you don't give up. Push for some sort of treatment (other than masking with Lyrica) to slow progression and reduce symptoms...at least TRY.
en bloc is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
glenntaj (10-16-2016)
 

Tags
drugs, nerve, neuropathy, sjogrens, symptoms


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Neuro appointment maryec Myasthenia Gravis 17 08-21-2009 05:25 PM
Neuro appointment maryec Myasthenia Gravis 7 05-20-2009 04:19 PM
Neuro Appointment ali12 Reflex Sympathetic Dystrophy (RSD and CRPS) 15 05-08-2009 10:33 AM
Neuro Appointment yeahbut Multiple Sclerosis 26 04-08-2008 11:54 PM
Neuro Appointment Myself Today yeahbut Multiple Sclerosis 21 02-14-2008 06:32 AM


All times are GMT -5. The time now is 05:08 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.