SpinachHands
Senior Member
- Messages
- 208
- Location
- United Kingdom
I've posted before but thought it would be useful to start a new thread with updated symptoms and what testing we've done already.
The summary is my partner has been experiencing a set of symptoms that come together, and though there are periods of them being worse than usual, overall they are always present, and the baseline of this has been worsening every day for months now. These symptoms are separate to their existing diagnoses. Their ME/long COVID has only been continuing to improve, they don't get PEM and they have more energy than they have in nearly two years. These symptoms were not present when their ME/long COVID was at its worst, and only started around mid last year.
The Big Symptoms:
- severe cognitive issues: difficulty thinking, concentrating, short term memory problems, every day this is getting worse (at the start of this year they old listen to audio books, now they can barely keep up with a five minute YouTube video, will often repeat the same question not recalling if they asked or what the answer was, can't remember what happened in the day by the evening)
- the above can have worse episodes of disorientation, confusion, not being able to answer or comprehend simple questions, can act "out of it" or like drunk/high, can become giddy/delirious
- intense feelings of pressure in the head, as though something is expanding in their head, generally felt all over, sometimes also in front with sinus pressure
- worsening blurry vision and double vision
- severe dizziness
- mood changes: uncharacteristic/unprompted anger, aggression, rage
- constant whole body feeling of "fizzing" or "sparkling" similar to pins and needles
- sudden weakness (distinct from fatigue, not related to energy but more an inability to move, sometimes becoming full paralysis, particularly in legs)
Other symptoms:
- sudden overheating
- sudden sweating or lack of sweating
- feeling hot when actually cool to touch
- stomach pain/churning
- feeling full early
- nausea, occasional vomiting
- eye pain
- neck pain/stiffness
- feeling of "loose throat", gagging or feeling of something in throat
- bulging veins accompanied by pain in lower arms
- vivid nightmares, and while awake feeling of things being "gross" or disgusting, similar to intrusive thoughts?
- frequent urge to urinate, feeling like bladder never empties fully, occasional pain when peeing
Worsened By:
- often the head pressure particularly is worse when lying fully flat
- all symptoms worse after eating/drinking
- usually worse after a bowl movement
- most medicines immediately made the above symptoms worse, and medicines that were fine for months eventually starting worsening these symptoms, now off all meds
- symptoms can be worst first thing in morning, can also be ok during day but then suddenly get bad at night
Unaffected By:
- activity/exertion, long periods of rest, small but frequent activity, or large activity doesn't seem to affect when the symptoms get bad
- diet, with the symptoms worsening from eating/drinking we tried all kinds of dietary modifications, some foods do seem to make these symptoms worse than others but we couldn't identify any pattern or common factor in these, and the symptoms are very distinct from their MCAS symptoms
- medicines/vitamins/supplements, none tried seem to have had a notable impact. The only potentials were amantadine, and a H2 blocker (nizatidine?), both of which initially seemed to possibly alleviate things but over time just ended up worsening the symptoms, losing all benefit
Tests & scans:
- all blood tests and panels for infection, inflammation, nutrition/vitamin deficiency, full blood counts, have come back clear, the only exceptions being a low white cell count, and a high ALP
- recently redone thyroid/hormone testing, all normal
- awaiting results of some more specific blood tests, and some 24hr urine collection tests
- head CT, head MRI with and without contrast, spine MRI without contrast, all clear
- eye check for papilledema all clear
- EEG clear
- ECG clear
- home blood pressure tests suggest frequent low diastolic blood pressure particularly, with occasional large sudden increases in BP
- abdominal ultrasound (investigating high ALP) clear
Doctors:
- we've spoken to neurologists, a neurosurgeon, a neuro-gastroenterologist, a gastroenterologist, an infectious disease specialist, an autonomic cardiologist, ME and long COVID specialists, an endocrinologist, a physiotherapist, a hypermobility and EDS specialist, and nobody has any clue what is happening!
- the gastros said it was odd for symptoms to worsen so immediately after eating, as food wouldn't have hit the digestive system yet, and it's odd that IVs and medicines also caused the same symptoms
- the ME/long COVID specialists said you'd expect cognitive symptoms to get worse/better in line with the fatigue & PEM symptoms if it was caused by that
- the neuros just kept defaulting to functional disorders, because all the scans and physical neurological exam was normal
Apologies for a lot of information, but we've been trying to figure this out for a year, and just keep hitting dead ends. It's getting worse every day, and it feels like we've tried every environmental, external change we can. If anyone has experienced anything like this, or has suggestions for where to look next, I would appreciate any ideas.
The summary is my partner has been experiencing a set of symptoms that come together, and though there are periods of them being worse than usual, overall they are always present, and the baseline of this has been worsening every day for months now. These symptoms are separate to their existing diagnoses. Their ME/long COVID has only been continuing to improve, they don't get PEM and they have more energy than they have in nearly two years. These symptoms were not present when their ME/long COVID was at its worst, and only started around mid last year.
The Big Symptoms:
- severe cognitive issues: difficulty thinking, concentrating, short term memory problems, every day this is getting worse (at the start of this year they old listen to audio books, now they can barely keep up with a five minute YouTube video, will often repeat the same question not recalling if they asked or what the answer was, can't remember what happened in the day by the evening)
- the above can have worse episodes of disorientation, confusion, not being able to answer or comprehend simple questions, can act "out of it" or like drunk/high, can become giddy/delirious
- intense feelings of pressure in the head, as though something is expanding in their head, generally felt all over, sometimes also in front with sinus pressure
- worsening blurry vision and double vision
- severe dizziness
- mood changes: uncharacteristic/unprompted anger, aggression, rage
- constant whole body feeling of "fizzing" or "sparkling" similar to pins and needles
- sudden weakness (distinct from fatigue, not related to energy but more an inability to move, sometimes becoming full paralysis, particularly in legs)
Other symptoms:
- sudden overheating
- sudden sweating or lack of sweating
- feeling hot when actually cool to touch
- stomach pain/churning
- feeling full early
- nausea, occasional vomiting
- eye pain
- neck pain/stiffness
- feeling of "loose throat", gagging or feeling of something in throat
- bulging veins accompanied by pain in lower arms
- vivid nightmares, and while awake feeling of things being "gross" or disgusting, similar to intrusive thoughts?
- frequent urge to urinate, feeling like bladder never empties fully, occasional pain when peeing
Worsened By:
- often the head pressure particularly is worse when lying fully flat
- all symptoms worse after eating/drinking
- usually worse after a bowl movement
- most medicines immediately made the above symptoms worse, and medicines that were fine for months eventually starting worsening these symptoms, now off all meds
- symptoms can be worst first thing in morning, can also be ok during day but then suddenly get bad at night
Unaffected By:
- activity/exertion, long periods of rest, small but frequent activity, or large activity doesn't seem to affect when the symptoms get bad
- diet, with the symptoms worsening from eating/drinking we tried all kinds of dietary modifications, some foods do seem to make these symptoms worse than others but we couldn't identify any pattern or common factor in these, and the symptoms are very distinct from their MCAS symptoms
- medicines/vitamins/supplements, none tried seem to have had a notable impact. The only potentials were amantadine, and a H2 blocker (nizatidine?), both of which initially seemed to possibly alleviate things but over time just ended up worsening the symptoms, losing all benefit
Tests & scans:
- all blood tests and panels for infection, inflammation, nutrition/vitamin deficiency, full blood counts, have come back clear, the only exceptions being a low white cell count, and a high ALP
- recently redone thyroid/hormone testing, all normal
- awaiting results of some more specific blood tests, and some 24hr urine collection tests
- head CT, head MRI with and without contrast, spine MRI without contrast, all clear
- eye check for papilledema all clear
- EEG clear
- ECG clear
- home blood pressure tests suggest frequent low diastolic blood pressure particularly, with occasional large sudden increases in BP
- abdominal ultrasound (investigating high ALP) clear
Doctors:
- we've spoken to neurologists, a neurosurgeon, a neuro-gastroenterologist, a gastroenterologist, an infectious disease specialist, an autonomic cardiologist, ME and long COVID specialists, an endocrinologist, a physiotherapist, a hypermobility and EDS specialist, and nobody has any clue what is happening!
- the gastros said it was odd for symptoms to worsen so immediately after eating, as food wouldn't have hit the digestive system yet, and it's odd that IVs and medicines also caused the same symptoms
- the ME/long COVID specialists said you'd expect cognitive symptoms to get worse/better in line with the fatigue & PEM symptoms if it was caused by that
- the neuros just kept defaulting to functional disorders, because all the scans and physical neurological exam was normal
Apologies for a lot of information, but we've been trying to figure this out for a year, and just keep hitting dead ends. It's getting worse every day, and it feels like we've tried every environmental, external change we can. If anyone has experienced anything like this, or has suggestions for where to look next, I would appreciate any ideas.
Have gotten a referral to a rheumatologist though to possibly get more opinions about autoimmunity and possibly vasculitis or neuropathy