Quote:
Originally Posted by adelina
I am so angry today. I have been so much in pain the past couple of weeks I can't even visit these pages. Today is a little better. It is the time of year when I first "got" this condition - Ganglioneuritis. Today the sun is shining and i want to go garden. Instead I am sitting crying and raging. I am in so much pain this time of year because one of my "inflamers" is allergys so the end of february starts my misery time. And I don't even have ANY symptoms right now! But I am exhausted and my arms feel the worst they can feel. The med s Itake make me so dull-witted I can't read a book and we don't have tv so all I can think about is how much I wantto so something - ANYTHING! I am so angry about my condition. I thought I was getting on towards accepting it - but today i feel like I am back at ground zero.
I go in on Wednesday day to start a series of three weekly Ketamine SHOTS. That will help temporarily. But could someone please help me force my dr.s to figure how to make this go away. I can't do this... I feel like I am loosing my mind. I need to go in there non-emotional and educated on the right test. In the past, things have show that I test a little high for some allergy and rheumatology test but I am not sure which ones. When I saw the specialists in those departments they where not concerned. BUT - of course by the time I saw them it was the time of year that my pain level was lower either later summer or autumn.
What can I do now to force the issue to get things addressed now. And have the correct tests done now. What tests do I have done? I know I have had tests before - but at the wrong time of year I think - does it make a difference?
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Hi Adelina,
Sorry to hear you're feeling so bad.
I wanted to ask you a few questions to better understand what you're going through. There are very few with a diagnosis of ganglioneuropathy/ganglionitis currently active on this board. Mine came from a sjogren's diagnosis (confirmed by lip biopsy) and then a new protocol with MRI to look at the dorsal root ganglion confirming the bilaterally enlarged DRG. The Sjogren's is known to cause ganglioneuropathy.
My question is how you got your diagnosis. What tests where used? And is your ganglionitis associated with an autoimmune disease? If so, which one? I have never heard of allergies being tied to ganglionitis before, but I'm curious about this connection. I know allergies are common with autoimmune disease (because there are immune based), but I don't understand how an allergy affects the ganglia directly. Can you explain this to me?
Lastly, can you use something to control the allergies if this is what setting off your pain? Addressing the 'root' of the problem (allergies for you) then maybe it would reduce your pain.
Hoping you feel better.