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Any ideas on my mystery illness?

I've been dealing with a mystery illness for some years now, most of my life really that I can remember. It has a lot of symptoms but they come and go at random, and a lot of the time once I get one attack, I'll get them much more frequenntly for a month or two before they stop for several months. I've gone to the doctor during these 'flare ups' and have been tested for MS with an MRI, which came out as clear. Ive had many blood tests, some show signs of infection, like high red or white cells. I had a 24hour heart reader but that came back as normal. The symptoms are like an optical migraine, but with other symptoms with it.

Partial temporary blindness in half of left eye
holes in vision
flashing or wavving shapes or lights in vision
full body numbness, like when your foot falls asleep
high resting pulse rate
low blood pressure
severe confusion
inability to read
difficulty speaking
high anaxiaty
sence of looming doom or death
amplified hearing
difficulty understanding speech
loss of ballance
stummbling walk or odd gate, think like an old style shambling zombie walk, its like that
memory loss
severe shivering
muscle spasms
muscle fatiuge, difficulty raising arm to head
difficulty lifting head
restricted breathing
difficulty swallowing
burning skin sensation
freezing skin sensation
turning pale / greenish
pale gums
pupils expand and conract randomly
pupils do not respond to light, or react oposite of how they should
vision turns reds or purple
sharp static sounds
cold hands/feet to touch
odd pattern like molting appearing on hands
nearly passing out
coughing until vomiting
bathroom signs of internal bleeding

Those usually hit in part or all together. Some more frequent ones I have almost all the time are,

memory problems
flickering or movements in vision
random bouts of breathing difficulty from throat swelling
bathroom signs of bleeding
feeling feverish with no fever
normal body tempreature is 96.8 - 97.6F
facial blindness - unable to tell people apart- people I see everyday are easier to identify
nearly falling asleep for no reason, out of the blue
sleeping a long time if im not woken up
eyes REM at random times
joint pain
stopping breathing and almost passing out from it
headaches that feel like a burn or pressure behind right eye

After an attack im very weak and confused for a few days.

Does anyone else get these in part or whole or have any ideas of what it could be?
Its gotten to the point that people around me downsize my attacks because doctors cant figure it out, so im largely ignored when I have one.
I hear 'the doctors cant find anything so there is nothing wrong' so much, its really disheartening because I just want to know what this is so I can stop it. I hear "Stop bothering the doctors, they're not going to find anything." a lot too.

I also get anxiaty attacks for no apparent reason, they vary with how bad they are. But Im told basiclly to ignore it or stop it or the 'nothing is wrong stop lying' when I've asked people close to me for advice on anxiaty.

A night ago I had what really seemed like an athsma attack, real hard time breathing and throat swelling. So I wanted to make an appointment to get an inhaler, since that seems like a good precaution. I was told no, because an inhaler would make it worse and I would always need one? Is that true? Because I really dont care if I would always need it, if it would help me breath better.

I almost forgot to add specifics about me,
I am not on any medication, and have had allergy tests. I'm only mildly allergic to wild grass'
I'm a 24 year old female.
I was in a accident at 3 years old where I drowned, and was in a coma from it for three days, my parents were told I'd be a vegetable.
I had some stability and learning problems when young, but it got better over time.
I do not travel, and only went to mexico once when very young.
I got bit by a tick that left a red ring at about 12 years old. But it was a tick that suposedly can not carry lyme.
I have hypothyroid, but do not need medication for it.
1 Responses
Avatar universal
Hi, some of what you describe could be a form of migraine. People usually think of migraine as a headache, but it can have a whole host of other symptoms like the ones you describe.
Oliver Sacks (the neuroscientist who the movie "Awakenings" was based on) wrote a whole book about migraine that might be interesting to you.
At the very least, you should find a doctor who can talk to you about the symptoms. Keep a notebook of where/when the symptoms happen, and you might find a pattern.
Many people discover "triggers" to their migraines, and can improve their health by avoiding those foods, smells, chemicals or environmental conditions.
Personally, I suffer from migraine, but can usually keep it away by taking a magnesium citrate supplement every night.
Your symptoms sound much more severe than mine. I'm sorry for that. I hope you find some relief. I hope you are under the care of a doctor!
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