Less Well Known and Rarer PANDAS/PANS/BGE Symptoms


Seizures:

Seizures can occur as part of PANDAS/PANS/BGE for some people. This includes organic neurological seizures as a result of brain inflammation, and psychogenic / functional seizures that can occur as a result of the stress and anxiety that people with PANDAS/PANS/BGE may experience. Different people can experience seizures differently, as there are different types of seizures.


Reduced Muscle Tone:

Some people with PANDAS/PANS/BGE may have a reduction in their muscle tone. This may mean that a person feels 'floppier' than usual and like they are struggling to hold themselves up. People with low muscle tone may get muscle aches and headaches from the extra effort needed to use their muscles and hold their head up or sit up, for example. Someone may find it harder to be as physically active as usual. Note that low muscle tone is more to do with the brain's signals to the muscles rather than the size of the muscles. Low muscle tone in BGE is a neurological issue.


Blurred Vision and Slight Vision Changes:

Some people with PANDAS/PANS/BGE report experiencing blurred vision, and some people may have other vision changes. Other vision changes may include seeing everything in 2D, having episodes where everything appears to have a coloured tint, or seeing things with more contrast than usual.


Speech Changes:

Some people with PANDAS/PANS/BGE lose the ability to speak, people can become non-verbal.


Some people may develop Selective Mutism, where someone is so anxious that they feel unable to speak in certain environments, such as in school.


Some people may develop a stutter, this could also be due to stuttering tics.


As part of the 'behavioral and developmental regression' symptom that some people may experience, people may develop 'baby talk' where they babble and talk as if they were a lot younger


Loss of Gross Motor Coordination:

Many people with PANDAS/PANS/BGE experience a loss of fine motor coordination, these are the small groups of muscles that control intricate movements such as handwriting, but some people also have a loss of gross motor coordination.


Gross motor coordination refers to our whole body movements and how we coordinate the big muscles in our body.


When people with PANDAS/PANS/BGE experience a loss of gross motor coordination it can look like subtle clumsiness or may appear to resemble ataxia.


Some people may struggle to touch their nose with their eyes closed, reach out and grab something in front of them, or pick up food on their fork at the correct angle and put it to their mouth.


Loss of Sensation:

A very small number of people in the PANDAS/PANS/BGE community have reported that they lose sensation in their whole body or in parts of their body when in a flare.


This can be anxiety provoking and may also make it difficult to sleep as people may feel physically numb or like there's something crawling on them (even though the person knows there's not). They may not be able to feel much when certain body parts are touched.


Depersonalisation and dissociation:

Some people with PANDAS/PANS/BGE may feel disconnected from themselves, as if their thoughts and feelings aren't really their own and like nothing is fully real.


People may feel like they are in a dream- like state where everything is slightly 'hazy'. A person's mind may go completely blank and they may go completely emotionally numb and feel hollow.


Some people may also 'black out' for long periods of time and then snap back into reality after going about their day completely unaware of what they have been doing and being a bit 'zombie-like'. Some people may feel like they are drowning in a constant stream of random thoughts.


Some people may dissociate due to the intense fear and depression that comes with PANDAS/PANS/BGE, but some people find that the depersonalisation and dissociation occurs before the onset of the other neurological and psychiatric symptoms in PANDAS/PANS/BGE or at a time when a person isn't experiencing much anxiety.


Brain Fog:

People may feel as if they can't think clearly or like they are not as 'mentally sharp' as usual. People can feel as if their head and mind are fuzzy and heavy. People may feel as if they are stuck in a stream of their own thoughts. People may feel like they cannot think of the words of things and people may repeatedly do the same thing which they have just done as they have forgotten that they have just done it. People may struggle to read things and people may feel very 'dazed out'. People may feel a bit confused and disoriented and may not process much of what is going on around them. People may struggle to think at all. Brain fog can have a huge impact on someone's memory, but memory issues can occur in PANDAS/PANS/BGE without brain fog.


Loss of Balance:

Some people with PANDAS/PANS/BGE may stumble to the side a bit when walking and struggle to keep their balance.


Joint issues:

Some people with PANDAS/PANS/BGE may experience joint aches when in a flare and their joints may seem slightly inflamed. This usually happens in a flare, when someone is not in a flare their joints may be better.


Dilated Pupils:

Dilated pupils are pupils that are bigger than usual and they may not constrict much when light is shone in. This usually happens when someone is in the worst of a flare, or some people may have them specifically when in rage attacks. Some people's eyes may also look slightly 'glazed'.


Fatigue:

Some people with PANDAS/PANS/BGE may experience fatigue. This is where a person may feel REALLY tired and drained and may need to sleep a lot more than usual. A person may feel like their body is heavy and that they cannot think clearly due to being so exhausted.


Misophonia:

Sensory processing issues are a big part of PANDAS/PANS/BGE for some people, but one that may get missed out is misophonia.


This is also regarded as 'Selective Sound Sensitivity Syndrome' and is where people may have strong physical and emotional reactions to certain sounds, which are usually repetitive sounds such as chewing, breathing or tapping. Certain words can also be trigger sounds.


When someone with misophonia gets triggered by a trigger sound, they may experience intense panic, anxiety, and rage as it can trigger a fight or flight reaction. It is possible for some people to have Misokinesia, where they have a reaction when seeing other people perform certain movements, which are usually repetitive.


Swallowing Problems:

Some people with PANDAS/PANS/BGE struggle to swallow, or may temporarily lose the ability to swallow. This can contribute to the food restrictions which are seen in some cases of PANDAS/PANS/BGE. It can lead to dehydration, weight loss and a fear of choking.


Difficulty Walking or Leg Weakness:

Some people with PANDAS/PANS/BGE may have leg weakness or walking problems. This has been recorded in a few cases. People may sit down to do things such as brush their teeth and people may struggle to hold themselves up. Some people need to use a wheelchair.


Catatonia:

This may occur in a small percentage of people with PANDAS/PANS/BGE. This is where people may appear somewhat unresponsive to their environment even though they are and appear awake. A person may be unable to speak or move, or they may only speak using echolalia and may only perform slow or atypical movements, including echopraxia and repetitive movements.


People with Catatonia can experience 'waxy flexibility' which is where someone's limbs can be placed in an atypical position and then they stay there for a prolonged duration of time.


People with Catatonia may not be able to dress themselves, feed themselves properly or take themselves to the bathroom. People may stay in the same place and may stay in a posture that is not typical.


People with Catatonia may be irritable whilst in this state, or may be restless. An episode of catatonia can last minutes, hours, days, weeks, months, or years (if untreated). Some people in the catatonic state may also grimace. Some people with catatonia may automatically obey a command or may do things without conscious thought. People with Catatonia may withdraw and have an aversion to others.


Visual Processing Issues:

Some people with PANDAS/PANS/BGE may struggle to comprehend what they are reading. People can see the words but it may be like they have no meaning. Some people may be slow to process what is going on around them.


Multiple Personality Switches:

This is something that has been reported to occur in a small number of people with PANDAS/PANS/BGE. People may switch into having another identity, this other identity can have a name and a backstory, some people find that it looks a bit like DID but isn't quite DID. Some people think of them as hallucinations from the psychosis in BGE or a form of intense dissociation. Some people may not have a full identity switch, but may feel like they have an episode where they are still themselves but feel like their personality has changed in terms of the way they think and act. This may occur due to other conditions which are associated with BGE.


Disclaimer: I am not a medical professional, this is NOT to be used as a substitute for diagnosis or treatment from a qualified physician, this is to be used for educational purposes only. For medical advice, please see a medical practitioner. I do NOT claim to treat, cure or mitigate any condition. Please note that these symptoms can be caused by any number of conditions and if you have them and aren't sure that they are caused by an underlying condition, then it can help to see a doctor who can tell you what it is. These symptoms can be really serious so please seek medical advice if you have them! If you know that a symptom is part of your PANDAS/PANS/BGE you should tell the doctor who is overseeing your care / a specialist.