Strange symptoms, any ideas?

M

musiclady

Active Member
My daughter has been having various problems lately. She previously had epilepsy but a visit to her neurologist rules out that cause this time. Just wondered if anyone has any ideas we could look up. Neurologist said, it's not epilepsy and gave no suggestions on what to do. apparently she is just supposed to live with it.

Symptoms vary in length, strength, and frequency.

heightened nerve reactions - feels physical pain if someone lightly touches her.
Episodes of seizure like activity - repetitive arm movements, glassy eyes, no speech control - lasts about an hour.

Feeling of things crawling on or in her.

Has felt body go numb and feeling of face falling off.

Intense pain in joints.

Nightmares

Burning feeling in hands and feet

Insomnia

Symptoms get worse, building, then she has an hour long episode, and everything gets better, then starts building again.

Any ideas?
 
D

DecemberGal

Member
DoWhat said:
Has she been tested for Lymes?
Click to expand...

Definately get her in to see a doctor that deals with lyme. They sound like many of the symptoms people with lyme are reporting. Some of the symptoms also sound like they could be from a co-infection. You might want to check out the mdjunction.com section on lyme facts. It may help you decide what to do.
I hope you get answers soon.
 
Dye Tied

Dye Tied

Garden Variety Gnome
Why are you asking strange people on the internet to diagnose your daughter?

Take her to a Dr., for goodness sake. :duh:
 
aps45819

aps45819

24/7 Single Dad
musiclady said:
Symptoms vary in length, strength, and frequency.
heightened nerve reactions - feels physical pain if someone lightly touches her.
Episodes of seizure like activity - repetitive arm movements, glassy eyes, no speech control - lasts about an hour.
Feeling of things crawling on or in her.
Has felt body go numb and feeling of face falling off.
Intense pain in joints.
Nightmares
Burning feeling in hands and feet
Insomnia
Symptoms get worse, building, then she has an hour long episode, and everything gets better, then starts building again.

Any ideas?
Click to expand...

Sounds like it might be this
 
morningbell

morningbell

hmmmmmm
musiclady said:
My daughter has been having various problems lately. She previously had epilepsy but a visit to her neurologist rules out that cause this time. Just wondered if anyone has any ideas we could look up. Neurologist said, it's not epilepsy and gave no suggestions on what to do. apparently she is just supposed to live with it.

Symptoms vary in length, strength, and frequency.

heightened nerve reactions - feels physical pain if someone lightly touches her.
Episodes of seizure like activity - repetitive arm movements, glassy eyes, no speech control - lasts about an hour.

Feeling of things crawling on or in her.

Has felt body go numb and feeling of face falling off.

Intense pain in joints.

Nightmares

Burning feeling in hands and feet

Insomnia

Symptoms get worse, building, then she has an hour long episode, and everything gets better, then starts building again.

Any ideas?
Click to expand...

LSD

even better, take her to the bloody hospital for crying out loud! :smack:
 
M

musiclady

Active Member
We've moved to Ohio and Drs here refuse to test Lyme. They tell me if she has had any antibiotics since we moved (true) that that would have cure Lymes. She was bitten many times while in MD but never had any problems then.
 
M

musiclady

Active Member
"Neurologist said, it's not epilepsy and gave no suggestions on what to do. apparently she is just supposed to live with it."

Apparently, you missed that she has been under a neurologist's care and Dr gave no suggestions. Often people on this forum have had or heard of unusual medical problems. Plus military, or former military have had greater access beyond Ohio's medical system.
 
M

musiclady

Active Member
Thanks everyone, for your thoughts. I know this is an unusual place to list symptoms, but I'm at a loss. How is it that Drs test something, rule it out, then say " at least it's not epilepsy again. Have a good day." Leaving us without any ideas and of course, poorer. Neurologist finds her "fascinating" and wants to use the videos we took of the episodes as "teaching tools." Told us to call the episodes, "spells". Yet she can't work or drive if these are uncontrolled. He told her that by not calling it epilepsy, she can drive if she wants. I certainly can't allow here on the road - what if a "spell" occurs while driving?
 
mAlice

mAlice

professional daydreamer
I'd find a new neurologist, but this is something to look at, too.

Encephalitis

What Are the Signs and Symptoms?

Encephalitis may cause fever, headache, poor appetite, loss of energy, or just a general sick feeling. In more severe cases, other symptoms might occur, including:

* high fever
* severe headache
* sensitivity to light (called photophobia, which means light hurts your eyes)
* nausea and vomiting
* stiff neck
* confusion
* sleepiness, difficulty waking, or unconsciousness
* convulsions (seizures)

Encephalitis
 
lisa8439

lisa8439

New Member
musiclady said:
We've moved to Ohio and Drs here refuse to test Lyme. They tell me if she has had any antibiotics since we moved (true) that that would have cure Lymes. She was bitten many times while in MD but never had any problems then.
Click to expand...

bolded part mine and is absolutely NOT true.... chronic lyme is certainly a possibility... and you will need to look for a lyme specialist in order to rule it out. I will PM you with some information - I had some of the same symptoms not too long ago when I had just turned 21. Everyone made a big joke out of it, 'oh she's hitting the bars/drugs/etc. and all that' PLUS I had just started a very hectic job working 50+ hours a week. I was diagnosed with a few different things, including scary things like MS, a brain tumor, etc - finally I went to see a lyme specialist (CHRONIC lyme - and there is a difference because antibiotics does not always eradicate chronic lyme...) and it helped.

It was a huge mystery - my parents were beside theirselves because here was their vivacious 21 year old, fresh out of college, full of life daughter who couldn't even get out of bed some days, was bumping into walls, couldn't remember what I did the night before, etc. They KNEW something was very very wrong, and as a parent myself, I can't imagine what they went through with me in those months before I finally had a diagnosis.

Of course not everyone who has those symptoms has lyme - but it is certainly worth looking into. The info I am going to PM you is actually more about 'toxin build-up' in the body and how it can cause those symptoms, toxin build-up can also come from other tick-bourne illnesses, mosquito illnesses, mold, algae exposure, etc - it might not be what is going on with her, but an interesting read and a possible springboard if nothing else. The doctor is here in MD that works with it, over on the eastern shore - but I know he does telephone conferences and he knows doctors in your state that will work with him, order the necessary bloodwork, follow the treatment protocol, etc.

PM'ing you now...
 
M

musiclady

Active Member
Thanks lisa8439 for the PM info. I'll check that out. I said true to antibiotics meaning that yes, she had some, not that I thought that was correct. I even suggested paying cash for the test, just to rule it out. When we read about Lyme we checked off nearly every symptom, but since it's not infested up here, Drs discount it.
 
Purplefox

Purplefox

I AM an enigma
musiclady said:
Thanks lisa8439 for the PM info. I'll check that out. I said true to antibiotics meaning that yes, she had some, not that I thought that was correct. I even suggested paying cash for the test, just to rule it out. When we read about Lyme we checked off nearly every symptom, but since it's not infested up here, Drs discount it.
Click to expand...

Please view, and print out pertinent info and take to aforementioned Dr.'s:

Resources

Just because your area is not "infested" does NOT mean that it is not present.
 
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