Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

[Jesse]

Interesting discussion.

While I have permanently worsened from (1) pushing too hard I have also worsened for what seems like (2) no reason at all, and also from a (3) TDAP vaccine. I also have (4) seasonal variation. Because (1) is discussed a lot it seems like the other reasons are not talked about as often.

I wish we knew more about other diseases like MS that have variation, but also a progressive subgroup. Why are some progressive and others not.

The possibilities definitely seem endless. I mentioned in another thread that even doing too little seems to make me worse..

 

[wigglethemouse]

What can we do to get deterioraters such as myself a suitable diagnosis that fully reflects their symptoms? It's become clear to me that there's no room for permanent damage being believed under an ME diagnosis, not even our own fact sheet says this exists. It all makes me feel very invalidated.

I often wonder this too. The issue is that there is no medical specialty for ME/CFS, so no biomedical clinics, no tracking of deterioration, no statistic on damage arising to organs, bones, and tissues. No solving of individual cases that can hint at pathways involved in others.

The biggest permanent damage that could easily be tracked is loss of bone density. An Australian doctor John Whiting used to send ALL his ME/CFS patients for a bone density scan and a large percentage had osteoporosis and ostetopenia, even at young ages. Yet no one else has done this. There is no clinic that could notice a trend for lower bone density and investigate. When it is brought up our concerns are dismissed as "it's just that you are not active" or other reasons. But in my mind there must be a reason. Bone density loss is permanent damage!

For those of us that have small fiber neuropathy there is no treatment because the only treatment is to address the root cause such as diabetes or sjogrens. The small fiber neuropathy gets worse, pain increases and spreads, blood flow deteriorates, and damage starts to occur, dysautonomia gets worse, neurological symptoms progress........ Nerves can repair, but only if you treat the root cause! Without that it is permanant damage.