Potential diagnosis of dysautonomia

[Stitches]

After many, many years of trial and error to determine what might be going on with me, I have a neurologist who has put a diagnosis of dysautonomia on my record. I have felt so frustrated for many years for many reasons. Mostly that I have been told all my problems are due to deconditioning and anxiety. Even if I am not deconditioned and not an anxious person. I am feeling a great deal of discouragement with the medical professionals. After I saw the neurologist, I was sent to Rheumatology and I have blood markers that are elevated for a connective tissue disease but again it is reported as undifferentiated and no specific diagnosis but to monitor. They feel this is not connected to any autonomic problems that I experience. The are testing for Lupus or Sjogren's disorder.  My symptoms mostly are unstable blood pressure. Usually orthostatic. The cardiologist said I didn't need the tilt table test as my BP drops just from sitting to standing at times. This does not always happen and is unpredictable. These are my symptoms: unstable BP, stomach problems, headaches, sensitivity to light due to Adie's Pupil, brain fog at times, heat intolerance, central sleep apnea. The recommendations are to keep fluids up, maintain adequate salt intake, wear compression stockings and to monitor my BP. I think this is great advice but still feel very misunderstood by my physicians. In South Dakota there are no physicians specializing in this disorder. I would love to connect with others who are maybe experiencing some of the same things I am going through. 

[Sarah Tee]

@Stitches, I’m glad you’ve found this forum and also finally found some help from your neurologist.

You will get lots of good support here.

[supertired]

On 2/21/2023 at 1:31 PM, Stitches said:

After many, many years of trial and error to determine what might be going on with me, I have a neurologist who has put a diagnosis of dysautonomia on my record. I have felt so frustrated for many years for many reasons. Mostly that I have been told all my problems are due to deconditioning and anxiety. Even if I am not deconditioned and not an anxious person. I am feeling a great deal of discouragement with the medical professionals. After I saw the neurologist, I was sent to Rheumatology and I have blood markers that are elevated for a connective tissue disease but again it is reported as undifferentiated and no specific diagnosis but to monitor. They feel this is not connected to any autonomic problems that I experience. The are testing for Lupus or Sjogren's disorder.  My symptoms mostly are unstable blood pressure. Usually orthostatic. The cardiologist said I didn't need the tilt table test as my BP drops just from sitting to standing at times. This does not always happen and is unpredictable. These are my symptoms: unstable BP, stomach problems, headaches, sensitivity to light due to Adie's Pupil, brain fog at times, heat intolerance, central sleep apnea. The recommendations are to keep fluids up, maintain adequate salt intake, wear compression stockings and to monitor my BP. I think this is great advice but still feel very misunderstood by my physicians. In South Dakota there are no physicians specializing in this disorder. I would love to connect with others who are maybe experiencing some of the same things I am going through. 

Any good rheumatologist will admit their “buckets” of diagnoses aren’t exact… if you’ve got some autoimmune markers for MCT, then that could be your underlying. Dysautonomia is commonly secondary to an underlying autoimmune. Ehlers Danlos could potentially fit in your case… common comorbidity with the others… you may want to look into it and see if it may fit.