I have a long way to go because I’ve only started to address the issue in Nov 2021 . I have no proper Diagnosis. I’m working with a naturopath to find out the root cause of the B12 Deficiency along with the tongue issue which is apparent to my family doctor and naturopath that it’s neurological.
I had a live and dry blood Analysis and my red blood cells are weak and appears the fluid has around the red blood cells is not clear.
My father was Diagnosed with Amyloidosis a a couple years ago very late into the disease and I’m not sure if that’s maybe what’s going on with me . I’m hoping to see the team of specialist in Vancouver that my father has been working with so I can rule it in or out. I’ve also had many MRI and CT scans and they are inconclusive. All my blood work looks normal range except B12.
I understand uncertainty and fear of the unknown when you are searching, testing, and trying to get to the bottom of symptoms. The whole process of elimination can be exhausting, but must be done. I myself have had many inconclusive tests including MRI, CT, x-ray, spinal tap, genetic testing, Nerve Conduction Studies/EMG, etc... I felt confused with many questions and in most cases so were doctors. I saw a multitude of specialists over many years.
My neurologist ineveitably determined that my B12 deficiency caused Small Fiber Neuropathy (SFN). SFN was detected via a skin punch biopsy. We could never get to the bottom of why I became deficient. I had all sorts of neurological symptons piling on from SFN, but also concluded Central Sensitization Syndrome (CSS) was present. CSS is a chronic pain syndrome that effects nerves, muscles, joints, bones, and causes sensory issues of taste, touch, smell, sight, sound, temperature. All from an upregulation of the Central Nervous System (CNS).
The reason for sharing some of my journey is to let you know that I'm here to support you. I may not be familiar with your father's diagnosis of Amyloidosis, and understand you are in early stages of narrowing down diagnoses, but please know you are not alone. Feel free to reach out to me anytime. Keep your chin up.
Connect is a great platform to learn, and receive help and support from each other. Do you mind letting me know if you make an appointment in Vancouver or what your next steps may be?
Connect
Connect
Like
Helpful
Hug
@leezah Thanks so much for explaning more.
I understand uncertainty and fear of the unknown when you are searching, testing, and trying to get to the bottom of symptoms. The whole process of elimination can be exhausting, but must be done. I myself have had many inconclusive tests including MRI, CT, x-ray, spinal tap, genetic testing, Nerve Conduction Studies/EMG, etc... I felt confused with many questions and in most cases so were doctors. I saw a multitude of specialists over many years.
My neurologist ineveitably determined that my B12 deficiency caused Small Fiber Neuropathy (SFN). SFN was detected via a skin punch biopsy. We could never get to the bottom of why I became deficient. I had all sorts of neurological symptons piling on from SFN, but also concluded Central Sensitization Syndrome (CSS) was present. CSS is a chronic pain syndrome that effects nerves, muscles, joints, bones, and causes sensory issues of taste, touch, smell, sight, sound, temperature. All from an upregulation of the Central Nervous System (CNS).
The reason for sharing some of my journey is to let you know that I'm here to support you. I may not be familiar with your father's diagnosis of Amyloidosis, and understand you are in early stages of narrowing down diagnoses, but please know you are not alone. Feel free to reach out to me anytime. Keep your chin up.
Connect is a great platform to learn, and receive help and support from each other. Do you mind letting me know if you make an appointment in Vancouver or what your next steps may be?
-
Like -
Helpful -
Hug
1 Reaction