Discussions By Condition: I cannot get a diagnosis.

neurological problems, history included, please help

Posted In: I cannot get a diagnosis. 29 Replies
  • Posted By: Springs
  • December 9, 2008
  • 02:52 AM

I'm going to try to make this post as short and easy to read as possible, so. I'm 20 years old and female, 130 lbs.

Here are my symptoms:


Variable weakness, on some days I can't get out of bed for more than a few minutes without collapsing
Eyelid drooping and chronically noticably unequal pupils
Losing my balance and falling over for no reason whatsoever
Difficulty swallowing and talking
Periods where my vision blanks out but I'm conscious
sometimes i get a persistent tremor from elbows to fingers and from knees to ankles
occasionally really bad sudden confusion and disorientation, ie I forget what I'm doing and where I am and dissociate and panic, sometimes forget how to speak during this, lasts about 30 minutes
not sure how to describe this one - when I laugh, my joints go very weak, it's noticable most when I need to hang on to something. I was swinging with my friend and I was laughing and my hands suddenly just sort of lost grip of the chains and I fell out of it
chronic insomnia
generalized feeling of mental dullness, my neurologist diagnosed me with "mild cognitive impairment"
inability to say what I want to, I lose words, say things that make no sense out loud, etc
easily stressed over things toddlers stress over, eg two people talking at once (i can't understand anything either of them say), can't multi task with ANYTHING
some things look bigger in my vision than they actually are, much bigger, i've jumped over things to avoid tripping at the last minute only to find out that they're a half inch off the ground and my hands sometimes seem to swell (not physically, just in my perception)






HISTORY I have temporal lobe epilepsy acquired from head trauma when I was 8, but the seizures are under control with the medications lamictal and keppra (monitored with EEG every 6 months). I also have a pretty severe immune deficiency under the blanket PID diagnosis, it's not very well under control. I take antibiotics every day and I get IVIG every 2 weeks. Rounding this out is Romano-Ward syndrome which I was diagnosed with 2 years ago.

I have a neurologist but he just ran a bunch of blood panels on me, we're still waiting for results. Someone help :( I feel like this is getting worse, and he's run these panels on me before and they were all either negative or inconclusive.

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29 Replies:

  • I'm not sure if it's a symptom but when I do sleep its always in the daytime, I can't ever sleep at night.
    Springs 4 Replies
    • December 10, 2008
    • 05:23 AM
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  • With your variety of problems, I just wondered if you have been tested for any of the mitochondrial diseases?The drooping eyelid and vision problems and weakness are clues. One mitochondrial disease is LHO, it is a heriditory opthalmic (I think the l stands for Lebers) disease but there are many others including Barths disease.I hope I am wrong but it might be worth investigating.best wishes
    chrismia 159 Replies
    • December 10, 2008
    • 02:37 PM
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  • I think you could have a neuromuscular disease.Your symptoms sound like myasthenia gravis or multiple sclerosis to some extent.:)
    richard wayne2b 1232 Replies
    • December 10, 2008
    • 04:01 PM
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  • Oh,I didn't see your history of temporal lobe epilepsy at first.It's possible that some of your symptoms are related to that &/or medication side effects.
    richard wayne2b 1232 Replies
    • December 10, 2008
    • 04:13 PM
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  • I just looked up some of the side effects of Lamictal and Keppra,and your symptoms could definitely be related to them.:)
    richard wayne2b 1232 Replies
    • December 10, 2008
    • 04:30 PM
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  • Thank you for your kind and fast responses!I will be sure to talk to my doctors about testing for mitochrondrial diseases, chrismia. thank you for the suggestion! LHON doesn't sound entirely like what I have but some of the others do. My mom's side of the family isn't too healthy so maybe. I have to go talk to my neuro once my test results come back in so I'll ask him to test me then.richard wayne2b, thank you for your response! I've only been on Lamictal and Keppra for maybe 3 years now, before that I was on the never-ending carousel of broken drugs I'm sure a lot of epileptics are used to. :D When I started taking Keppra I felt bunches clearer, probably due to the absence of partial seizures but the drug itself is not too bad.Lamictal is. But my neurologist has been tapering off my dosage very slowly and monitoring me, and it (how I feel) still has not gone away. it's true that Lamictal at the very least and Keppra maybe could be causing a lot of this, but I've discussed this with him at length and he feels that it's not the major source.Of course this is the same doctor who misdiagnosed me several times on headaches, so.. :rolleyes: But still it seem to not change much no matter what medication I'm taking. One of the tests he is running is for MG, he was convinced I had it a few years ago but he said the test was inconclusive he said.Hope its just the meds!!
    Springs 4 Replies
    • December 11, 2008
    • 03:29 AM
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  • dear Springs in part i agree with crismas, i saw cases similars to yours in patients with Mitocondrial disiases. You have a lot o similarities: Eplepsy - Muscular weakness including eyelids - Heart conduction disiase - Cognitive impairment - femeale and age 13-30yrs. It could be MELAS or MEERF. The diagnosis is based in muscular biopsy. i hope it help you. sory for the bad english.
    caveman500 1 Replies
    • December 12, 2008
    • 03:22 AM
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  • Make sure you get your B12 levels checked and know what number it is. B12 deficiency can cause irreversible neurological damage, mimics MS, and is grossly underdiagnosed and therefore undertreated! The "normal" range is between 200-1100...if your level is below 500 I would treat for B12 deficiency. I would also research candida overload - this is very likely due to your extreme antibiotic use and can cause alot of your symptoms. Docs often don't believe in this problem, but I find it in alot of my patients with chronic disease/autoimmune dysfunction. I think you have several issues going on and not one blanket diagnosis, though mitochondrial disease is a possibility and should be ruled out. Please consider an alternative approach to treating all of your symptoms. A good acupuncturist, naturopath, and other alt practitioner may really be able to help you. I believe strongly in CAM (complimentary and alternative medicine) as I have helped numerous patients on their path towards healing. best wishesDOM
    acuann 3080 Replies
    • December 12, 2008
    • 04:44 AM
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  • Apologies,I made a mistake, the mitochondrial disease I should have been thinking of is called Progressive external ophtalmoplegia.You usually see symptoms between the ages of 18 to 30 years.Progressive weakening of external eye muscles give drooping eyelid(s)Proximal muscle weakness and exercise intolerance.But Lebers gives vision problems which you mentioned.best wishes for a diagnosis and recovery
    chrismia 159 Replies
    • December 13, 2008
    • 00:11 PM
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  • OMG!!!!! blaze you are my hero. i was just saying to somebody else on here how sick me and the kids(11 of them!!!!!!!! I know, we cant stop having them but we luv em all!!) have been since moving to sparta georgia. those big metal power poles are right behind our trailer and they just now put a cell phone thing right next to the corner of the dirt road that goes to our trailer. all the kids started getting sicker ever since and even my husband says his tummy is soured more since comeing to sparta. i know what you mean about the electric broom!!!!! OMG! we have a corn popper that we got for christmas 2 years ago and every single time i use it my toes on both feet go numb as a door ***b for about 3 hours and on days when i dont use the corn popper my toes are just fine. i keep getting this big funny sort of rash on my bottom side and the doctor looked and said it may be lime disease but i right away told him that we dont have any limes and i dont like sour stuff and dont let the kids have any limes or sour stuff too. i sweaer doctors no matter where you go are god-durned idiets. i mean he could just look at my rash and say it was coming from being around limes without even asking me questions if i like limes or even was eating them. i just thought of something else OMG!!!! what about the computer?????? I mean if the electricity from all the other stuff is whats making me and the kids all sick the computer is electric too!!!!! the kids play games on it all the time and i use it alot too. if its electric then it must be part of what is making us all sicker since coming to sparta and getting internet. what do you think blaze????? I mean could the computer do it too. its electric like the corn popper and the broom. thanks to everybody on here for being so smart about medical stuff!!!!! this place is the best!!!! Yaayyyyyy!!!!!
    JillianQ 7 Replies
    • December 13, 2008
    • 01:10 PM
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  • I wish more people would research the literature regarding the ''garbage'' diagnosis of electromagnetic sensitivity.I've done so and believe it does not exist!
    richard wayne2b 1232 Replies
    • December 13, 2008
    • 04:05 PM
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  • I've had similar problems and recovered and interact with lots with such conditions. Two causes I'm familiar with are mercury from dental amalgam and Lyme Disease. Both can cause all of your symptoms and commonly do. Mercury (from dental amalgam) has been documented to be a common cause of all of these conditions, and is often called MS or MG. Amalgam replacement and detox has been documented to usually improve such conditions (for those who have several amalgams or metal crowns over amalgam- I'm one such who recovered from MS) www.flcv.com/ms.html & www.flcv.com/hgrecovp.html & www.dams.cc Two people in my family and many others who I know have Lyme Disease and symptoms like many of these. My wife is fully disabled by Lyme Disease and had to retire prematurely. We are currently treating with supplements and Samento, but recovery from Lyme is slow.
    berniew1 37 Replies
    • December 13, 2008
    • 07:26 PM
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  • This is to Blaze.Where in the ***l did you get your''junk science?"If you'll just read the legitimate literature regarding the so-called ''electromagnetic sensitivity','' you'll have to come to the rational conclusion that it does not exist,at least in the studies that have been done so far.:)
    richard wayne2b 1232 Replies
    • December 14, 2008
    • 01:55 AM
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  • This is to Blaze.Where in the ***l did you get that ''junk science''regardingelecxcxcv xcv cvvp;p05p-956wer
    richard wayne2b 1232 Replies
    • December 14, 2008
    • 02:05 AM
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  • This is to Blaze.Wu=here in the ***l did you get the ''junk science''regarding elctromagnetic sensitivity?Any rational person can,asIdid conduct a review of the literature on this topic and realize that there is NO proof that it even exists!:)
    richard wayne2b 1232 Replies
    • December 14, 2008
    • 02:21 AM
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  • Electromagnetic sensitivity is definately documented by studies in the medical literature to exist, at least in the sense that EMF from appliances, etc. and MRIs induce currents that takes mercury from mercury amalgam dental fillings into the body, and mercury is highly toxic, causes adverse health effects to millions according to EPA, medical studies. There is also lots of documentation that EMF and RF waves have adverse health effects. See study documentation at: www.flcv.com/galv.htmlwww.flcv.com/emfeff.html
    berniew1 37 Replies
    • December 14, 2008
    • 03:20 PM
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  • Dear berniew1: The evidence does suggest a relationship between electromagnetic fields and the release of mercury from dental fillings,but that's a far cry from systemic symptoms caused by electromagnetic fields.In fact,the literature I've reviewed suggests that it doesn't exist.:)
    richard wayne2b 1232 Replies
    • December 14, 2008
    • 03:55 PM
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  • Oh its real alright. after reading all the expert stuff that blaze put on here, i made all the kids stay off the computer all weekend and guess WHAT!!!! not a one of em was sick today with anything and even my husband said his tummy was doing better. Now if thats not proof that blaze is an expert i dont know what is. Also i did not use the corn popper either and my toes have not given me one bit of trouble, no numbness or anything. YAAAAAYYYYYY Blaze!!!!!! you're my hero sorry to richard wayne and stuff but you just need to learn more about it from blaze.
    JillianQ 7 Replies
    • December 14, 2008
    • 07:01 PM
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  • Hi i want to tell you i had all the symptoms that you are describing and more to make a long story short.ill try I seen doctors all over the USA my wife has been a nurse for more than 14 years ILL get to the point it was my amalgam silver fillings that was killing me. please if you have these type fillings or metal crowns. web search symptoms of amalgam and silver fillings mercury poison. I can tell your bad off i was miss diagnosed with every thing under the medical book it seemed like. you can e mail me to at trackreader@gmail.com if you think this my be a possibility. I ask a doctor about my teeth he said they can cause problems but not the serious ones that i was having, he was wrong.I am just trying to help because if this is what your problem is it is ***l hands down it ***n near killed me I got so bad it caused me to be diagnosed with acquired brain injury. But its been 8 months since i have got them removed and i feel 8,0000 times better not a 100% but way better i hope you can get the problem verifided the Ada and FDA says Mercury is OK in the mouth wrong That's why docs are not recognizing it as a possible diagnoses.
    trackreader 1 Replies
    • December 14, 2008
    • 09:59 PM
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  • The fact that your kids feel better is absolutely not proof that electromagnetic fields had anything to do with it.Yours is known as anecdotal ''evidence.''
    richard wayne2b 1232 Replies
    • December 14, 2008
    • 10:06 PM
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