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?

Strep, Psychiatric Symptoms Possibly Linked in Some Children (http://www.medindia.net/news/view_news_main.asp?x=18269)

I saw a story about this on the news the other day. Iwas amazed at the number of misdiagnosis of conditions like Turets, OCD, etc. that were actually illness due to strep. It's a long shot, but is worth looking into. Good Luck!

Has she been tested for Lymes?

Has she been tested for Lymes?

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.

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

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

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?

Sounds like it might be this (http://www.imdb.com/title/tt0070047/)

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

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

:yeahthat:

Sounds like it might be this (http://www.imdb.com/title/tt0070047/)

Aw, geez! I just had to click the link didn't I?!

That movie scared the jeebus out of me! :yikes:

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?

LSD

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

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.

"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.

Exorcist - cute. Wish it were, then at least there'd be a diagnosis.

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?

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 (http://kidshealth.org/teen/infections/bacterial_viral/encephalitis.html)

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.

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...

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.

musiclady
i had read this thread, and just happened to hear a commercial on tv talking about Fibromyalgia. Not all the symptoms match but several do.

Fibromyalgia Diagnosis (http://www.fmnetnews.com/basics-criteria.php)

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.

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

Resources (http://www.lyme.org/resources/resources.html)

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

musiclady
i had read this thread, and just happened to hear a commercial on tv talking about Fibromyalgia. Not all the symptoms match but several do.

Fibromyalgia Diagnosis (http://www.fmnetnews.com/basics-criteria.php)

Thanks, we were wondering about that too.

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

Resources (http://www.lyme.org/resources/resources.html)

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

Thanks Purplefox, this is why I posted - for info and resources others may have already found.

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

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

While I agree with you medical treatment should be sought. Have you ever been to the doctor and realized you knew more about your problem then him? The internet is a wonderful tool and you have to be your own advocate when it comes to your health. It can never hurt to get the opinion of others and possibly offer it to your doctor.

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?

How old is your daughter? These symptoms sound like what happens to me when I take Percocets, it's an adverse reaction to the drug. Not trying to imply anything just throwing that out there.

How old is your daughter? These symptoms sound like what happens to me when I take Percocets, it's an adverse reaction to the drug. Not trying to imply anything just throwing that out there.

She's 19, and doesn't want to take anything. When we moved to Ohio, she had severe depression and epileptic seizures and was on 8 pills a day. Turns out the one for epilepsy was causing the need for the others. She now doesn't trust pills for anything, even headaches. So thanks but I don't think it's a drug reaction. She won't take any.

She's handling it well. Has told her friends just to call me or get her home if she stops speaking or looks funny. She carries a fold up cane because the pain comes and goes. But we'd really like to know what's happening. We wish the experts could come up with the Star Trek tricorder and could diagnose the problem. Wouldn't that be nice?

Musiclady a.k.a Mom.

I hope you don't glare at me cuz of me posting on here as well. :)
(To those that are going wtf? I'm the 19 yr old daughter with the issues)


Sounds like it might be this (http://www.imdb.com/title/tt0070047/)

:cds:

Exorcist - cute. Wish it were, then at least there'd be a diagnosis.

Wait.. you're right mom. Crap. Back to square one.

LSD

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

First part: LSD: Uhhh Why would I be doing that? Oh well. Guess it's assumed everyone is horrible until proven good.

Though nice to color the second part in white. *rolls eyes*. Ya know.That sounds like a GREAT idea! Let's go sit in the hospital for HOURS to be told "Umm you owe us lots of money and we don't have an answer for you. Have a nice day!"
What are they going to do? Been there. Done that. They did blood work and whatever they tested for didn't show anything weird. Was recommened to the Nuerologist. Erm.. yeah.. that made me feel great.

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


Great. Now a specialist doesn't have a clue what's wrong with me.

We wish the experts could come up with the Star Trek tricorder and could diagnose the problem. Wouldn't that be nice?

:yeahthat: :( I want one... :( Can I get a bat'leth?

I'm going :offtopic:

But it seems it could be leaning to lyme. Though why would it wait 10+ years to show symptoms?

But it seems it could be leaning to lyme. Though why would it wait 10+ years to show symptoms?

Welcome PhotoChick18! Here's some interesting reading I found...

Causes and symptoms

Lyme disease is caused by Borrelia burgdorferi. Once Borrelia burgdorferi gains entry to the body through a tick bite, it can move through the bloodstream quickly. Only 12 hours after entering the bloodstream, Borrelia burgdorferi can be found in cerebrospinal fluid (which means it can affect the nervous system). Treating Lyme disease early and thoroughly is important because Lyme disease can hide for long periods within the body in a clinically latent state. That ability explains why symptoms can recur in cycles and can flare up after months or years, even over decades. It is important to note, however, that not many people who are exposed to Borrelia burgdorferi develops the disease.


Lyme disease (http://www.lifesteps.com/gm/Atoz/ency/lyme_disease.jsp)

Hope you get a diagnosis and feel better soon!

Lyme disease (http://www.lifesteps.com/gm/Atoz/ency/lyme_disease.jsp)
Hope you get a diagnosis and feel better soon!

Ah.. that would make sense. See 1/2 of my life was in Maryland and ya I got bit by ticks... lots of times. There was this really big one on my head once. Musiclady a.k.a Mom, doesn't that bring back memories???? Which reminds me of that there is sometimes a rash... what if it's on top of my head?! Knowing me.. prolly.

Belvak:
I do like the link you gave for the symptoms sound oh so familiar.

Late disseminated disease and chronic Lyme disease

Weeks, months, or even years after an untreated tick bite, symptoms can appear in several forms, including:


Fatigue, forgetfulness, confusion, mood swings, irritability, numbness.


Neurologic problems, such as pain (unexplained and not triggered by an injury), Bell's palsy (facial paralysis, usually one-sided but may be on both sides), and a mimicking of the inflammation of brain membranes known as meningitis; (fever, severe headache).


Arthritis(short episodes of pain and swelling in joints) and other musculoskeletal complaints. Arthritis eventually develops in about 60% of patients with untreated Lyme disease.

The facial paralysis happens more so during the spells I have. It was really bad the first time I had one from this.

Now to persuade a DR to test it... though... Don't know if this is anything.
I can't have back rubs from anyone. It causes the numbing acid feeling sensation through my arms and my legs, and one time caused a spell.
Though I'm the weird one and can't just have a normal fever and sore throat can I?? :cds:

Sorry I have to laugh at myself. Thanks again.

Causes and symptoms

Lyme disease is caused by Borrelia burgdorferi. Once Borrelia burgdorferi gains entry to the body through a tick bite, it can move through the bloodstream quickly. Only 12 hours after entering the bloodstream, Borrelia burgdorferi can be found in cerebrospinal fluid (which means it can affect the nervous system). Treating Lyme disease early and thoroughly is important because Lyme disease can hide for long periods within the body in a clinically latent state. That ability explains why symptoms can recur in cycles and can flare up after months or years, even over decades. It is important to note, however, that not many people who are exposed to Borrelia burgdorferi develops the disease.

:yeahthat:

Have a Norwegian family friend who moved back to Norway 12 years ago after living in PA for a few years. He was treated for Lymes last summer. So theoretically it was hiding in his system for 11 years w/ no discernable symptoms.

INSIST they check you, and if they won't, find someone who will. Heck, take a vacation in MD to get checked if you need to.

She's 19, and doesn't want to take anything. When we moved to Ohio, she had severe depression and epileptic seizures and was on 8 pills a day. Turns out the one for epilepsy was causing the need for the others. She now doesn't trust pills for anything, even headaches. So thanks but I don't think it's a drug reaction. She won't take any.

She's handling it well. Has told her friends just to call me or get her home if she stops speaking or looks funny. She carries a fold up cane because the pain comes and goes. But we'd really like to know what's happening. We wish the experts could come up with the Star Trek tricorder and could diagnose the problem. Wouldn't that be nice?

If you go to mdjunction.com/lymediseasesupportgroup You can contact one of the leaders of the support group with your location and how far you are willing to travel and they will help you find a doctor that works with lyme disease. There is tons of information on there also.
I hope and pray you find a good doctor soon. I know how divestating this disease can be. Please get all the information you can.
God Bless