← Return to At a loss, multiple consultations still no answer...any idea?

Discussion
Comment receiving replies
@rwinney

Hello @chance25, I'm Rachel. It seems I'm a little late to the conversation, but I'd like to welcome you, and commend you on your perseverance and maturity in handling all you are going through. Thank you for joining the Mayo Connect community. I see you have a ton of support, which makes me happy, as you navigate your confusing health obstacles.

The original list of symptoms you provided in this thread looked very familiar to me. I also had a plethora of symptoms and saw a plethora of "ologists" to rule out diagnoses. One thing lead to another, and another, and another. In my case, I had some pretty solid diagnoses along the way…migraine, corneal disease, small fiber neuropathy, b12 deficiency, occipital neuralgia, chilblains. Some were legit diagnoses but others were shots in the dark for not knowing or understanding what else could be wrong with me. I had mitigating circumstances which doctors were unable to grasp outside of their specialty lane. Eventually, by process of elimination, it was discovered I had this "umbrella" term called Central Sensitization Syndrome (CSS) hovering over my other diagnoses. This is when you have an upregulated central nervous system and peripheral sensory system. It can be responsible for a multitude symptoms.

I've attached a presentation from the Mayo Clinic's Dr. Sletten on CSS. Not to confuse you further, but please take a look and keep the info in your back pocket as you navigate your current health challenges.
https://youtu.be/8defN4iIbho
My wish for you is that you remain positive and hopeful in your journey. I'll be watching your progress along the way. Please let me know if I can answer any questions or help you. I'd love to know if the CSS video speaks to your current situation in any way. Will you let me know your thoughts when you can?

Jump to this post


Replies to "Hello @chance25, I'm Rachel. It seems I'm a little late to the conversation, but I'd like..."

It's never too late, thank you for your input Rachel it's greatly appreciated.

Definitely worth knowing as I can relate to many of the symptoms presented. I'll favourite the video so I can refer back to it if needed.

Were you given an effective treatment plan once you were diagnosed?

Also, I'm still looking to make a trip down to mayo clinic in London. They advised me to wait until I'd more diagnostic tests so I'll be armed with much more information now.

All the best.

Rachel my name is Suzette, i was watching the video and I feel like this doctor was talking to me and what I am going through. Thanks for sharing

  Request Appointment