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Having seizures-Docs cannot determine why

39 year old female.  I only go to the doctor when I feel like I'm about to die because my insurance is not the best.  

I have been experiencing weakness, excessive sweating, nausea for months and really thought that it was my sugar causing problems. In addition, I was smelling smoke all the time.  My husband and coworkers thought I was going nuts.  My balance was off, I kept forgetting things, started having vision problems, ear aches all the time, etc.  During the past 2 years, I have had strep at least 4 times.  In each case, I had spasms in my neck, which caused my neck to drop uncontrollably.  I even went to the ER a couple of times about it because I couldn't stand it.  They gave me muscle relaxers each time and told me that the strep infection was going to my muscles.  I had brushed the other symptoms off thinking that it was just respiratory or because the strep really did a # on my immune system.  Side note...all my sugar tests came back fine.

2 months ago, my left side went numb.  My left eye and face started twitching, and that side of my face dropped within hours.  I went to the doctor not knowing what was happening and worried that I could have suffered a small stroke.  The doctor and I discussed how I had been feeling and all of my symptoms over the past few months.  

He immediately ordered an MRI and heart ultrasound.  Both were normal.  He diagnosed me with Bells Palsy and put me on steroids.  A week later, I was in the ER having seizures back to back to back.  They admitted me, did another MRI and CT scan, plus blood work.  During my seizures, I was semi-aware of what was going on around me, but I couldn't talk, respond or move.  Hospital staff and family said that my eyes were twitching back and forth.  The Neuro on duty said that they couldn't be seizures if I remembered any part of what was going on.  (Note:  My daughter has had seizures since birth, so I am well aware that there are several different kinds of seizures.  After he said this, we looked it up and realized that yes...there are seizures where the patient can be aware of his/her surroundings.)  Anyway --- I went over my history with the countless # of doctors at the hospital and mentioned to every single one that I had been diagnosed years ago with rheumatoid but did not think that it was correct.  Just felt like I had another form of arthritis, so I had not been to the RA doc in 10+ years.  I have been taking Aleve for my arthritis for years.  They put me on seizure meds in the hospital and meds to prevent blood clotting.

ONE doctor came and told me that my inflammation count was high and that it could be part of my problem.  The Neuro still insisted that he didn't think that I was having real seizures.  All of the docs agreed that I did not have Bell's Palsy because my face was looking better after a couple of days on seizure meds.

I went home 4 days later and felt better being on the seizure meds.  I followed up with both my Primary and the Neuro a couple of weeks later, and both agreed to keep me on Keppra Extended release.  (Taking 1500 mg/day)  The Neuro told me at the office visit that he was now confident that I was indeed having seizure activity after all after looking closer at my hospital chart and talking to the ER staff who witnessed at least 6 of them that first day.  The Neuro suggested that I get a nerve conduction test to see if neuropathy was playing a part in it.  I have not had that test yet.  He also told me to track when I was having the episodes, what I was eating, etc. to see if we could figure it out.  The EEG I had showed no seizure activity, but he said that it was only as good as how I was feeling at the time of the EEG.

Approx one month after my ER/hospitalization, the seizures started back.  Same symptoms:  face dropped, eye/facial twitching, left side numbness, dizziness, off balance, slurred speech, etc.  I missed several days of work because of it.  I stayed on the Keppra (same dosage).  I felt better after about a week and a half.

Now two months after my ER/hospitalization, the seizures have started back AGAIN.  Same symptoms.  I can feel them coming on, so to date, I have been able to have someone watch/assist me.  I have missed work again during this time.  

I am tired all the time, and my arthritis pain and stiffness have increased since the seizures started a couple of months ago.  

I have been asking the docs the following questions and am not confident that they have even checked any of the below.  When I asked the Neuro about my inflammation count, he said that it wasn't high to him, BUT the doctor in the hospital said that it was concerning to him.

1.  Could it be Lupus and I was just misdiagnosed years ago?  Would they have already checked that?
2.  I asked about Lyme Disease after a co-worker started researching and found that many of my symptoms match up to that.  The Neuro said that he didn't think it would be that.  
3.  No lesions on brain MRI, so they have ruled out MS.  However, one doc suggested that I may have to do a lumbar puncture to find out if I'm in the beginning stages.
4.  They only did an MRI on the base of my neck and brain.  Could there be something else causing all of this that wouldn't have been caught on the MRI?  
5.  Hormones?  I am only 39, but I remember my mother going through menopause early.  I also mentioned this to the doctors.  No one seemed concerned with that.

I am tired of people (friends/family) telling me that it's just stress and that I should just do something to relax me!  The seizures happen when I'm relaxed, off work, at work, in a store, etc.  They don't happen specifically during a stressful situation.  Geez!  

Additional symptoms/possible links:  I have suffered from restless leg syndrome for years.  I drink Diet Mtn. Dew (approx. 2 liters/week), but I also drink tons of water and green tea.  I am a little overweight, but my cholesterol, blood pressure, heart and sugar are normal.  I itch all the time.  My face has started breaking out over the past 6 months.  I have had a couple of yeast infections within the past year.  (Kind of thought it was the antibiotics from strep causing those)  My periods are like clockwork, but I cramp between periods and not during.  I don't sleep well, but I think it may be because of the Keppra.  (It's 2 am as I'm typing this.)

Medical History:  No surgeries except for getting wisdom teeth cut out a few months ago.  Until the seizures, I was only hospitalized for the birth of my daughter 6 years ago.  During my pregnancy, I did suffer from toxemia and had high blood pressure.  My daughter had a stroke in utero and now has epilepsy and cerebral palsy.  I HAVE NEVER USED DRUGS OR SMOKED.  I only drink about 1 glass of wine per month if even that.  I work a full-time job and have a loving, happy family.

Anyone have any insight on what could be going on?
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201897 tn?1245842334
You're welcome!

Glad you're going to the Rheumy.  Hopefully, they have more than half a clue.  Let us know what you find out.

I've found most neuros to be notoriously dismissive.  It's a hard road to find a good one.  I've been fortunate to (finally) find one I like - sort of.  It's an arrogant neuro to not even look into the possibility of simple-partial seizures.  What a jerk.

It took 3 years to finally find a doc who could diagnose my Lyme.  Another 2 years after the end of Lyme treatment to find one to diagnose the Fibromyalgia.  You have to keep fighting!  You are your own best health advocate.  Seriously.  Do you keep copies of all your test results?  If not, start now.

Best of luck and I hope you find some answers soon!
Helpful - 0
Avatar universal
Thank you for taking time to read my post!!!!!

I just told my husband that I need to make an apt with a new RA doc because the Neuro is not getting me answers fast enough.  He burned me when he told me that I wasn't having "real" seizures in the hospital and then came back and said that I was.

When I asked him about Lyme, he scoffed and asked if I had been bit by anything recently.  When I told him that our yard has been full of mosquitos this summer, he said didn't say anything.  I know that Lyme is from ticks, but wouldn't you at least say, "Hey!  If you're getting bit by mosquitos, let's test you for Lyme and West Nile..." or SOMETHING!??!

He also told me that the RA diagnosis years ago was of "no concern to him", but when he sent me to the lab for a B12 test, I noticed that RA count was on the list of things that he could have checked on his Lab Report Request Sheet.  So...he checks others for their RA count but just not me because it didn't concern him for my situation?

I did drop the Diet Mtn. Dew for 3 weeks that first month, but I didn't feel better/worse from it.

Think I'll see what the Rheumatologist says and stick to the Neuro for my Keppra refills.

Thanks for your insight!
Helpful - 0
201897 tn?1245842334
Sorry you're going through all this.

Wait.  The neuro didn't even test you for Lyme?  He just dismissed it?  That raises my hackles.  See if you can get one of your docs to run a Western Blot for Lyme.  If you've had it for long enough, chances are a PCR will come back negative.  PCRs are also notorious for having false negatives.  That means a lot of folks are out there with Lyme and are still wondering why they feel so awful.  

Lumbar punctures for Lyme aren't that reliable either, although it may show something else that could be causing the seizures and might be worth looking into.

Get thee back to the Rheumy.  Seriously.  Get retested.  RA, Lupus, etc.

Next, drop the diet soda and all products containing artificial sweeteners.  Some people are very neurologically sensitive to artificial sweeteners.  Try it for a week and see what happens.  Or doesn't.

Bear in mind, I'm just spitballing here.  I've had neuro-Lyme, along with Bell's Palsey so I'm kind of skewed that way.

Hope you have some answers soon!
Helpful - 0
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