Roadblocks, ICU Nurse

[Justkate24]

Hello,

I have to begin by saying that I am an ICU Nurse of 7 years and have rotated through Medical/Surgical/Trauma/Neuro ICUs at a level 1 hospital. I am not uneducated, but when it comes to myself, I tend to drop everything and just suffer through my symptoms. Also, a blessing and a curse is that I work closely with my physicians and can run any concern by them without an appt; however, the downside to this is that not one doctor knows all of my symptoms or has kept a timeline of my concerns.

My husband is in college and I am working two jobs to make ends meet for our family while he is not able to keep full time hours. I do not want to waste money that we do not have on testing and more roadblocks, so I felt like your experiences may help me.

My story is this... Throughout my childhood beginning at about 10 years old, I would experience syncopal episodes. These would occur infrequently ( maybe 4 times in my childhood). They would always begin with my face and arms going numb, then loss of vision and then hearing and ultimately I would collapse. My mom did not believe in running to the dr, so I did not receive any medical attention.

Finally, while I was in college I experienced another episode in which I fell in a bar ( I was DD and not drinking) and hit my head 3 times. The following day I drove to the ER because I had increased pressure in my head and was worried. CT scan was clean and I was discharged from the ER.

I frequently deal with dizziness/ loss of vision on standing to the point that I sometimes crouch down until it passes (which is a bit embarassing when at work).

At 16 years old, I went to my PCP complaining that my tongue felt like it had a weight on the back of it and it weakened my swallowing. He told me to go take an aspirin and that I would be fine. I still deal with this on/off and sometimes wake myself up choking, which usually marks the beginning to another flare-up of symptoms.

I followed-up with a cardiologist after my syncopal episode at the bar and did a tilt-table in which I failed and was subsequently diagnosed with Neurocardiogenic syncope. I guess my concern has always been that this is not what I really have.

In my 20s, my husband noticed that I grind my teeth when I do anything with fine motor movement of my fingers. I told him it was because my fingertips feel funny and he insisted I follow-up. I had an EMG that was not negative, but was not consistent with carpal tunnel as my PCP ordered the test for.

So basically, I dropped my effort there and haven't been back to the Dr. I had a neurologist test my reflexes and eyes because I feel slight spasms/tremors in my arms/legs at times and when I am writing/reading my eyes will dart off the paper and cause me to lose my spot.

About once every 2-3 months I will experience exhaustion and generalized achey pain as well as the return or worsening of the fingertip sensation and worsened dizziness. I work 2 jobs and flip back/forth between shifts, so no one takes this concern seriously, but I have previously had my thyroid/cbc/chem checked multiple times to rule out any deficiencies.

I obviously deal with alot of stress in my life, which has lead to me asking for an antidepressant prescription to help me get through life without the feelings of depression/ suicidal ideation. I also have always had blurred vision requiring glasses, but have been told that my left eye is fine whereas my right eye is really bad. The left eye compensates to a degree so I can get away with only using my glasses for reading.

So basically, do I shell out money to pursue a diagnosis or just accept the Neurocariogenic syncope diagnosis as the reason for all of my symptoms?

[lyndacarol]

I have to begin by saying that I am an ICU Nurse of 7 years and have rotated through Medical/Surgical/Trauma/Neuro ICUs at a level 1 hospital. I am not uneducated, but when it comes to myself, I tend to drop everything and just suffer through my symptoms. Also, a blessing and a curse is that I work closely with my physicians and can run any concern by them without an appt; however, the downside to this is that not one doctor knows all of my symptoms or has kept a timeline of my concerns. My husband is in college and I am working two jobs to make ends meet for our family while he is not able to keep full time hours. I do not want to waste money that we do not have on testing and more roadblocks, so I felt like your experiences may help me. My story is this... Throughout my childhood beginning at about 10 years old, I would experience syncopal episodes. These would occur infrequently ( maybe 4 times in my childhood). They would always begin with my face and arms going numb, then loss of vision and then hearing and ultimately I would collapse. My mom did not believe in running to the dr, so I did not receive any medical attention. Finally, while I was in college I experienced another episode in which I fell in a bar ( I was DD and not drinking) and hit my head 3 times. The following day I drove to the ER because I had increased pressure in my head and was worried. CT scan was clean and I was discharged from the ER. I frequently deal with dizziness/ loss of vision on standing to the point that I sometimes crouch down until it passes (which is a bit embarassing when at work). At 16 years old, I went to my PCP complaining that my tongue felt like it had a weight on the back of it and it weakened my swallowing. He told me to go take an aspirin and that I would be fine. I still deal with this on/off and sometimes wake myself up choking, which usually marks the beginning to another flare-up of symptoms. I followed-up with a cardiologist after my syncopal episode at the bar and did a tilt-table in which I failed and was subsequently diagnosed with Neurocardiogenic syncope. I guess my concern has always been that this is not what I really have. In my 20s, my husband noticed that I grind my teeth when I do anything with fine motor movement of my fingers. I told him it was because my fingertips feel funny and he insisted I follow-up. I had an EMG that was not negative, but was not consistent with carpal tunnel as my PCP ordered the test for. So basically, I dropped my effort there and haven't been back to the Dr. I had a neurologist test my reflexes and eyes because I feel slight spasms/tremors in my arms/legs at times and when I am writing/reading my eyes will dart off the paper and cause me to lose my spot. About once every 2-3 months I will experience exhaustion and generalized achey pain as well as the return or worsening of the fingertip sensation and worsened dizziness. I work 2 jobs and flip back/forth between shifts, so no one takes this concern seriously, but I have previously had my thyroid/cbc/chem checked multiple times to rule out any deficiencies. I obviously deal with alot of stress in my life, which has lead to me asking for an antidepressant prescription to help me get through life without the feelings of depression/ suicidal ideation. I also have always had blurred vision requiring glasses, but have been told that my left eye is fine whereas my right eye is really bad. The left eye compensates to a degree so I can get away with only using my glasses for reading. So basically, do I shell out money to pursue a diagnosis or just accept the Neurocariogenic syncope diagnosis as the reason for all of my symptoms?

Welcome to ThisIsMS, Justkate24.

We certainly respect your nursing education and experience. Most of us do not have your medical background; but we are willing to share opinions, since you have asked.

You have had numerous blood tests "to rule out any deficiencies." Among these, have you had nutrient testing? What is your vitamin B12 number? Your vitamin D [a.k.a. 25-hydroxy D] test result number? These are not expensive tests (Personally, I know that the Vit D test is about $50.). Magnesium test? Zinc test?

You know that your symptoms are common to many conditions. In my opinion, it is logical to begin with the easy, inexpensive tests (especially because over 1/2 the world's population is deficient in D3; it is estimated that 40% of the American population is deficient in B12 – any person at any age can develop B12 deficiency; experts are finding more and more nutrient deficiencies).

Please let us know how it goes with you.

[euphoniaa]

Hi Justkate and welcome!

FYI - I edited your post to break up the giant block of type because I, and many of us here, have difficulty reading large blocks of type -- short paragraphs are better.

Now I'll have to read through it again to see if I have anything to add, but my first request is that you explain a couple of your terms. I'm unfamiliar with a "Neurocariogenic syncope diagnosis" so I'll have to research it and see if it has any similarities to MS and reply when I have more time.

There's lots of information here, however, so explore the site and ask as many questions as you want! The first thing to note is that every one of us is unique in our symptoms & course of MS. Second is that we're not medical professionals, and we all have differing personal opinions & approaches.

So, you can expect anything, including some ideas that may seem "out there," but since no one has really come up with a test, cause, or cure for MS, any of them MAY be valid for you. And be sure to pull out your Critical Thinking Cap as you dig into the info here.

Good luck!

[Justkate24]

Thank you for your response! I have an appointment on Friday and will begin by asking for those nutrients to be tested. It has been a long time since I have been to the Dr because it seems that I never get answers and walk away frustrated and just deal with the symptoms.

Neurocardiogenic syncope is basically a condition in which my body does not respond to changes in blood pressure and the blood pressure can fall causing decreased blood flow to the brain which results in loss of consciousness.

[NHE]

Hi Kate,
Regarding B12, you may be interested in reading the book "Could It Be B12? An Epidemic of Misdiagnosis" by Sally Pacholok and Jeffery Stuart.

http://b12awareness.org/could-it-be-b12 ... a-release/