u/Bat_baby_97

Hello everyone,

I’m desperately looking for recommendations and would be incredibly grateful for your help.

I have been diagnosed with autoimmune autonomic neuropathy associated with seronegative Sjögren's syndrome, with manifestations including POTS, gastroparesis, and severe gastrointestinal dysmotility. I am currently being treated with IVIG and rituximab.

In addition to these manifestations, I experience very severe systemic symptoms: profound fatigue that is completely out of proportion to even minimal activity, excessive sleepiness, muscle pain, severe intolerance to standing, shortness of breath when upright, marked pallor, and an overall feeling of being very unwell. During these episodes, I feel as though my body is severely ill or intoxicated, even though there is no obvious cause. Simply standing up or doing basic daily activities can leave me completely exhausted and force me to lie down.

I understand that some of these symptoms may be related to my autoimmune disease and dysautonomia, but I want to make sure there isn't another underlying condition contributing to them that has been overlooked.

I am desperate. I urgently need recommendations for an immunologist with experience in complex autoimmune diseases, autoimmune autonomic neuropathies, and dysautonomia—someone willing to evaluate my case comprehensively and investigate all possible causes of my symptoms.

Because of my health, it would be extremely helpful if the physician offers online consultations. But I am open to recommendations from anywhere in the world.

If you know of a specialist who may be able to help, please let me know. Any recommendation would mean a great deal to me.

Thank you so much. 🤍

Hello everyone,

I’m desperately looking for recommendations and would be incredibly grateful for your help.

I have been diagnosed with autoimmune autonomic neuropathy associated with seronegative Sjögren's syndrome, with manifestations including POTS, gastroparesis, and severe gastrointestinal dysmotility. I am currently being treated with IVIG and rituximab.

In addition to these manifestations, I experience very severe systemic symptoms: profound fatigue that is completely out of proportion to even minimal activity, excessive sleepiness, muscle pain, severe intolerance to standing, shortness of breath when upright, marked pallor, and an overall feeling of being very unwell. During these episodes, I feel as though my body is severely ill or intoxicated, even though there is no obvious cause. Simply standing up or doing basic daily activities can leave me completely exhausted and force me to lie down.

I understand that some of these symptoms may be related to my autoimmune disease and dysautonomia, but I want to make sure there isn't another underlying condition contributing to them that has been overlooked.

I am desperate. I urgently need recommendations for an immunologist with experience in complex autoimmune diseases, autoimmune autonomic neuropathies, and dysautonomia—someone willing to evaluate my case comprehensively and investigate all possible causes of my symptoms.

Because of my health, it would be extremely helpful if the physician offers online consultations. But I am open to recommendations from anywhere in the world.

If you know of a specialist who may be able to help, please let me know. Any recommendation would mean a great deal to me.

Thank you so much. 🤍

Hi everyone. I have neuro-Sjögren’s, and I was wondering if anyone else with neuro-Sjögren’s experiences something similar.
Besides my dysautonomia symptoms, I have episodes where I feel extremely unwell, and the fatigue is completely out of proportion to the amount of activity I do. For example, if I simply get up to pour myself a glass of water or walk a few steps around the house, I feel like all my energy suddenly disappears. My muscles start to ache, and it feels as if I've done intense physical exercise, even though I've barely done anything.
This isn't just the dizziness or rapid heart rate that I associate with POTS. It's a completely different feeling, a whole-body collapse. I feel like I have to lie down immediately, not because I think I'm going to faint, but because it feels like my body simply can't keep functioning. It's as if every cell in my body has run out of energy.
During these episodes, I also have a terrible overall feeling that is very difficult to describe. The closest way I can explain it is that I feel as if I've been poisoned or intoxicated. I feel profoundly weak, nauseated, my muscles ache, and my entire body feels extremely unwell. Sometimes these episodes even happen while I'm already lying down and doing absolutely nothing.
These episodes can last for several days, not just a few hours, before I gradually start to feel better again.
Has anyone else with neuro-Sjögren’s experienced this? Is this considered part of the disease, or did you eventually find another explanation?

Hi everyone. I have neuro-Sjögren’s, and I was wondering if anyone else with neuro-Sjögren’s experiences something similar.
Besides my dysautonomia symptoms, I have episodes where I feel extremely unwell, and the fatigue is completely out of proportion to the amount of activity I do. For example, if I simply get up to pour myself a glass of water or walk a few steps around the house, I feel like all my energy suddenly disappears. My muscles start to ache, and it feels as if I've done intense physical exercise, even though I've barely done anything.
This isn't just the dizziness or rapid heart rate that I associate with POTS. It's a completely different feeling,a whole-body collapse. I feel like I have to lie down immediately, not because I think I'm going to faint, but because it feels like my body simply can't keep functioning. It's as if every cell in my body has run out of energy.
During these episodes, I also have a terrible overall feeling that is very difficult to describe. The closest way I can explain it is that I feel as if I've been poisoned or intoxicated. I feel profoundly weak, nauseated, my muscles ache, and my entire body feels extremely unwell. Sometimes these episodes even happen while I'm already lying down and doing absolutely nothing.
These episodes can last for several days, not just a few hours, before I gradually start to feel better again.
Has anyone else with neuro-Sjögren’s experienced this? Is this considered part of the disease, or did you eventually find another explanation?

Hi everyone. I have neuro-Sjögren’s, and I was wondering if anyone else with neuro-Sjögren’s experiences something similar.
Besides my dysautonomia symptoms, I have episodes where I feel extremely unwell, and the fatigue is completely out of proportion to the amount of activity I do. For example, if I simply get up to pour myself a glass of water or walk a few steps around the house, I feel like all my energy suddenly disappears. My muscles start to ache, and it feels as if I've done intense physical exercise, even though I've barely done anything.
This isn't just the dizziness or rapid heart rate that I associate with POTS. It's a completely different feeling, a whole-body collapse. I feel like I have to lie down immediately, not because I think I'm going to faint, but because it feels like my body simply can't keep functioning. It's as if every cell in my body has run out of energy.
During these episodes, I also have a terrible overall feeling that is very difficult to describe. The closest way I can explain it is that I feel as if I've been poisoned or intoxicated. I feel profoundly weak, nauseated, my muscles ache, and my entire body feels extremely unwell. Sometimes these episodes even happen while I'm already lying down and doing absolutely nothing.
These episodes can last for several days, not just a few hours, before I gradually start to feel better again.
Has anyone else with neuro-Sjögren’s experienced this? Is this considered part of the disease, or did you eventually find another explanation?