5 ms·

Yes, and that’s not it. Unfortunately my constellation of symptoms does not seem to match any single entity. I have basically resigned myself to thinking that

Yes, and that’s not it. Unfortunately my constellation of symptoms does not seem to match any single entity. I have basically resigned myself to thinking that I may have an unusual genetic immunological or neurological defect. Think (this list is not exclusive or constant, and I go through multi-month cycles of subsets of these symptoms - all of them new onset since getting sick): - assorted chest and abdominal pain - thoracic spine pain - migraine - panic attacks, and strong palpable sensations of anxiety - sleep disturbances - blurry vision - one-sided facial numbness and pain - tachycardia - fatigue - nausea - difficulty concentrating - muscle fasciculations Some days I feel great, some days I’m virtually incapacitated. Hundreds of tests and years of specialists later we have found an assortment of minor things but nothing that really explains it. I’ve even entertained the idea that it’s all psychological but years of therapy have given me techniques to control the panic attacks, but not stop the physical sensations that kick them off.

s5300 5y ago
CSF leak?
- bigcorp-slave 5y ago
  That is a very interesting idea. The migraines do seem to be getting better with time, which would track that… but it’s been years!
erentz 5y ago
Few thoughts come to mind in case you haven’t already come across them yourself: 1. Unlikely but testing for sleep apnea, just to rule out since I’ve heard people with strange constellations of symptoms find improvement this way. 2. Testing for neurological autoimmunity - a paraneoplastic panel, neuronal antibody panel, anti-nmda receptor. There are a number of panels depending on the lab for these with some overlaps between them just check what they cover. These can be hard to obtain you need a doctor who groks them. Also can be expensive and sometimes difficult to have insurance cover but that’s usually helped if the doctor groks it. 3. A small fiber punch biopsy. (See Therapath for info, may also find a talk on YouTube called Small Fibers Big Problems by Dr Oaklander) 4. Investigate ME/CFS (probably already have) and dysautomomia (autonomic neuropathy, possibly indicated if biopsy positive). 5. I’ve just put my email in my bio. If you’re US based and want a recommendation for some helpful neurologists who can look for this stuff send me an email.
- bigcorp-slave 5y ago
  No sleep apnea, tried that one. No ME/CFS investigation done yet. Immunological seems very plausible. Dysautonomia seems like potentially a good fit. My feet are fine, so it can’t be SFSN, right? I’d love a recommendation for helpful neurologists. Will send email. Thank you!
cgio 5y ago
Not a doctor, just being anecdotal. Any wheezing? I have most of these issues from hay fever/allergy, and just mentioning it because I was not even looking into it as as option. Especially if symptoms occurred after moving, changing environment (I had moved to a different country). Some of those could also be the outcome of others, feedback with others, medicine you take to address them etc., e.g. chest pain and panic attacks or puffers/adrenaline and palpable anxiety.
- bigcorp-slave 5y ago
  No wheezing. I’ve had a full allergic workup and am negative to everything. No medicine to address the panic attacks - I have a beta blocker for if things get really bad but I try to avoid taking it and have only taken maybe three in the last two years. I actually am getting ready to move back to where I lived before I got sick on the off chance that that helps.
  - cgio 5y ago
    Thought you might have checked already. Wish you the best, I know first hand how such a combination of symptoms can feel debilitating but you obviously do all you can about it and that’s the most important thing.
    - bigcorp-slave 5y ago
      Thank you.
Miner49er 5y ago
Have you been checked for any autoimmune diseases? Sounds like it could be something like Celiac disease. From what I've seen, most of those are potential Celiac symptoms. But I imagine other autoimmune diseases could also cause these types of symptoms. This graphic [0] shows some potential Celiac symptoms. A guy surveyed a bunch of people with Celiac for their symptoms and listed the symptoms given more then once. The orange ones are the most commonly given and many of your listed symptoms would fall under the orange ones. The abdominal pain is especially what makes me think it could be Celiac vs. other autoimmune diseases or something else. [0] - https://glutendude.com/wp-content/uploads/2021/02/celiac-disease-symptoms-1.jpg https://glutendude.com/wp-content/uploads/2021/02/celiac-dis...
- bigcorp-slave 5y ago
  That is an interesting proposal. I do have one autoimmune disease, that from reading the entire body of research literature is not known to cause a large majority of my symptoms. But I do hear that autoimmune diseases travel in herds… will look into it. Thank you!
Sainth 5y ago
This sounds somewhat similar to symptoms I am having. Currently on a 5 month journey trying to get a diagnosis. I have abdominal pain, headaches, high blood pressure with periodical orthostatic hypertension (my blood pressure goes up in the standing position; it is supposed to go down), tremors, tachycardia, fatigue, difficulty concentrating, constipation or diarrhea, severe sleep disturbances, muscle spasm and cramps, hot flushes, cold hands and feet, and I have some episodes of euphoria, panic attacks and paranoia. Same as you I have some days where I feel just fine. I have had the same experiences as you when it comes to doctors, they do a lot of tests, the tests come back inconclusive and then they just shrug. At least I have a nice GP that says that he has no clue what is wrong with me but that something is definitely wrong. So far we have done a lot of blood work, various urine and stool samples, CT-scan and MRI of abdomen. The only thing they have been able to find so far is slightly elevated noradrenaline/norepinephrine levels (three times) and some cysts on my left kidney. The elevated noradrenaline could be because of a pheochromocytoma (adrenaline producing tumor), but when I have done the 24-hour urine test for that it comes back negative. The only thing that I have found to work is to eat a low tyramine diet which seems to greatly reduce the symptoms, though not completely remove them. It might not be the same as you are having problems with, but I do see a lot of similarities. My email is in my profile, let me know if you want to compare notes.
- bigcorp-slave 5y ago
  Yes, definitely. I will email you after work today. I have also been evaluated for a pheo with negative results - the sudden panic attacks out of nowhere seem to trigger this diagnostic pathway. I will try to reduce dietary tyrannies - that is a good idea.
- rscho 5y ago
  And are you taking monoamine oxidase inhibitors?

s5300 5y ago

CSF leak?

bigcorp-slave 5y ago
That is a very interesting idea. The migraines do seem to be getting better with time, which would track that… but it’s been years!

erentz 5y ago

Few thoughts come to mind in case you haven’t already come across them yourself: 1. Unlikely but testing for sleep apnea, just to rule out since I’ve heard people with strange constellations of symptoms find improvement this way. 2. Testing for neurological autoimmunity - a paraneoplastic panel, neuronal antibody panel, anti-nmda receptor. There are a number of panels depending on the lab for these with some overlaps between them just check what they cover. These can be hard to obtain you need a doctor who groks them. Also can be expensive and sometimes difficult to have insurance cover but that’s usually helped if the doctor groks it. 3. A small fiber punch biopsy. (See Therapath for info, may also find a talk on YouTube called Small Fibers Big Problems by Dr Oaklander) 4. Investigate ME/CFS (probably already have) and dysautomomia (autonomic neuropathy, possibly indicated if biopsy positive). 5. I’ve just put my email in my bio. If you’re US based and want a recommendation for some helpful neurologists who can look for this stuff send me an email.

bigcorp-slave 5y ago
No sleep apnea, tried that one. No ME/CFS investigation done yet. Immunological seems very plausible. Dysautonomia seems like potentially a good fit. My feet are fine, so it can’t be SFSN, right? I’d love a recommendation for helpful neurologists. Will send email. Thank you!

cgio 5y ago

Not a doctor, just being anecdotal. Any wheezing? I have most of these issues from hay fever/allergy, and just mentioning it because I was not even looking into it as as option. Especially if symptoms occurred after moving, changing environment (I had moved to a different country). Some of those could also be the outcome of others, feedback with others, medicine you take to address them etc., e.g. chest pain and panic attacks or puffers/adrenaline and palpable anxiety.

bigcorp-slave 5y ago
No wheezing. I’ve had a full allergic workup and am negative to everything. No medicine to address the panic attacks - I have a beta blocker for if things get really bad but I try to avoid taking it and have only taken maybe three in the last two years. I actually am getting ready to move back to where I lived before I got sick on the off chance that that helps.
- cgio 5y ago
  Thought you might have checked already. Wish you the best, I know first hand how such a combination of symptoms can feel debilitating but you obviously do all you can about it and that’s the most important thing.
  - bigcorp-slave 5y ago
    Thank you.

Miner49er 5y ago

Have you been checked for any autoimmune diseases? Sounds like it could be something like Celiac disease. From what I've seen, most of those are potential Celiac symptoms. But I imagine other autoimmune diseases could also cause these types of symptoms. This graphic [0] shows some potential Celiac symptoms. A guy surveyed a bunch of people with Celiac for their symptoms and listed the symptoms given more then once. The orange ones are the most commonly given and many of your listed symptoms would fall under the orange ones. The abdominal pain is especially what makes me think it could be Celiac vs. other autoimmune diseases or something else. [0] - https://glutendude.com/wp-content/uploads/2021/02/celiac-disease-symptoms-1.jpg https://glutendude.com/wp-content/uploads/2021/02/celiac-dis...

bigcorp-slave 5y ago
That is an interesting proposal. I do have one autoimmune disease, that from reading the entire body of research literature is not known to cause a large majority of my symptoms. But I do hear that autoimmune diseases travel in herds… will look into it. Thank you!

Sainth 5y ago

This sounds somewhat similar to symptoms I am having. Currently on a 5 month journey trying to get a diagnosis. I have abdominal pain, headaches, high blood pressure with periodical orthostatic hypertension (my blood pressure goes up in the standing position; it is supposed to go down), tremors, tachycardia, fatigue, difficulty concentrating, constipation or diarrhea, severe sleep disturbances, muscle spasm and cramps, hot flushes, cold hands and feet, and I have some episodes of euphoria, panic attacks and paranoia. Same as you I have some days where I feel just fine. I have had the same experiences as you when it comes to doctors, they do a lot of tests, the tests come back inconclusive and then they just shrug. At least I have a nice GP that says that he has no clue what is wrong with me but that something is definitely wrong. So far we have done a lot of blood work, various urine and stool samples, CT-scan and MRI of abdomen. The only thing they have been able to find so far is slightly elevated noradrenaline/norepinephrine levels (three times) and some cysts on my left kidney. The elevated noradrenaline could be because of a pheochromocytoma (adrenaline producing tumor), but when I have done the 24-hour urine test for that it comes back negative. The only thing that I have found to work is to eat a low tyramine diet which seems to greatly reduce the symptoms, though not completely remove them. It might not be the same as you are having problems with, but I do see a lot of similarities. My email is in my profile, let me know if you want to compare notes.

bigcorp-slave 5y ago
Yes, definitely. I will email you after work today. I have also been evaluated for a pheo with negative results - the sudden panic attacks out of nowhere seem to trigger this diagnostic pathway. I will try to reduce dietary tyrannies - that is a good idea.
rscho 5y ago
And are you taking monoamine oxidase inhibitors?