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Could they be right? Could i be crazy?

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Old 02-01-2013, 01:07 PM   #1
Join Date: Feb 2013
Location: New Jersey
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JLB78 HB User
Could they be right? Could i be crazy?

I was hospitalized at 15 years old (March 1994) symptoms, left eye droop, followed shortly by loss of motor function on my left side. I was treated for Lymes and was sent home 4 days later (symptoms still present). 2 months later hospitalized again, symptoms, left eye droop, discomfort on left side abdomen, shortly followed by loss of motor function on left side. A Lymes test was taken and result came back negative. I was treated for Lymes since that is what I was diagnosed with two months prior and all other blood work came back negative. After 2 weeks in the hospital a pic line (left arm to heart) was inserted and i was sent home to take IV antibiotics (a nurse was sent by every 2 weeks to ensure pic line was clean and antibiotics were being administered correctly). 3 months later I was finished with antibiotics and being 16 now I was tired of being bed ridden.

I thought all was well, besides serious bouts with fatigue (thought it was normal as a teen) no real issues until I turned 19. Back in the hospital, symptoms, left eye droop, discomfort by left side abdomen, shortly followed by loss of motor function on left side. All test results negative or normal (Lymes, Lupus, and several others) this is when I was first told "Sometimes our brain gets creative and tells our body we are sick when we are actually not". Sent home after 4 days, no diagnosis but was given oral antibiotics for Lyme's upon my Mother's request (not sure what else to do) and told to go to physical therapy for the motor skills. I did PT for 1 month as instructed still getting no real relief I slept a bunch 17 to 18 hours a day. Finally after about 3 months started to return to normal strength and found a job.

Dealing with issues of fatigue on and off, at 22 landed in the hospital again, symptoms left eye droop, discomfort on left side by abdomen, shortly followed by loss of motor function on the left side, but this time I also was having respiratory issues. All tests normal, I ended up in ICU as respiratory issues worsened. A Neurologist met with me in the hospital and ordered blood work and performed a Tensilon Test as he suspected Myasthenia Gravis. Tensilon Test was positive, antibodies were discovered in blood work, I was immediatey put on Mestinon and Prednisone (to open lungs). When breathing issues were no longer a problem I went through Plasma Pheresis (Transfers your own blood through a machine to clean it out, then back into your body) during this procedure they decided blood was thinning too much so foreign plasma was cycled through as well. This caused me to get a cold on top of my immune system being weak kicked my butt badly. A Dr. visited to check on me and suggested he did not trust the diagnosis as he felt I should have started getting better. He convinced my mother that we should go to a better hospital and get a Single Fiber EMG done and that would tell us unequivocally if I truly had MG. 2 weeks after being released from my local hospital (continuing Mestinon and Prednisone) I went to the University of Penn. Left eye droop and still had motor skill problems still present, I was hooked up to this machine that sent electric shocks throughout my body, this test took an hour or so and the result came back normal. The Dr said "Although it's disconcerning that you seem to have issues walking. Sometimes we go through these "Episodes" and
our minds play tricks on us". At this time I was sent home, no diagnosis, back to the drawing board. I continued struggling and sought out the Neurologist that had diagnosed me with MG. Needless to say he was less than happy with me for seeking a second opinion (Dr from Univ. of Penn called him) and he said you are cured and anything else is in your head. Several months past, and all I did was sleep until I started to feel normal again.

Fast forward to now I am 34 married and the father of 3. Last week I was hospitalized for what they thought was a brain bleed. I went to the Dr (which I never do, because I simply do not trust them) because I had a headache, lightheaded and dizzy accompanied by sweats. He was concerned and told me to go to the ER immediately. I went to the ER where I got a CT of the brain, which came back normal, the ER Dr said in order to rule out a brain bleed a spinal tap must be performed. The LP came back abnormal, there were 4 viles taken the first showed signs of red blood cells which is normal, but the fourth vile which should be free of red blood cells had five times the amount as the first. I was transferred to a trauma hospital equipped with MRI at 2:30 AM, my wife and I were prepped for an operation, Living Will and other documents were signed I was sent for an MRI/MRA and results came back normal. A Neurologist came in said he believes it was Cluster Headaches and released me (quite an interesting 15 hours). I was still not feeling right so I sought out a doctor who saw me quickly, eye droop in left eye started to present itself, so he sent me for blood work and also wanted me to see an Opthamologist. Blood work for Lymes and a general test to show inflammation came back normal. The Opthamologist was intrigued by the left eye droop and he has sent me to a Neuro Opthamologist who has been excellent, get this without me telling her about my previous diagnosis she said she is fairly certain what I have is Myasthenia Gravis.

The saga continues. She has ordered blood work to rule out some things and during the exam she noticed a head tilt, she asked me for my driver's license and pointed out the head tilt. She suspected something traumatic happened at birth. After questioning my Mom she said when I was 2 weeks old i was hospitalized because I was non-responsive and they did not think I would survive, Drs did a test for Viral Meningitis which came back normal. I guess at 2 weeks old it was in my head as well? 3 months in the hospital I was released with no diagnosis. I found that I was hospitalized again when I was 3 yrs old, symptoms ear infection and muscle weakness, 4 days later I was released treated for ear infection, no diagnosis for muscle weakness. I guess it was all in my head again when I was 3?

Sorry this is way long winded, but for years I felt I have been crazy and everything I feel is in my head, now it seems things are surfacing to suggest otherwise. Blood tests came back negative for Lymes and Lupus, but was positive for Epstein Barr (not sure if it's active now, I will get further clarification Monday when results of MG antibodies come back) which would/could explain the issues of fatigue. I just want definitive answers so I can kick whatever this is once and for all.

I'd appreciate any and all feedback if you have a similar experience or if any of my symptoms sound familiar to you. Thank you

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Old 02-08-2013, 05:06 AM   #2
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Re: Could they be right? Could i be crazy?

Hi. I hope your latest MG tests give you clarity, one way or another. I feel for you, this sounds horribly frustrating.

Re: Epstein-Barr, I believe that once we're exposed to the mono virus, which nearly all of us are at some point, that it stays positive forever. (Mine is elevated permanently, it seems, but my doctors don't see that as clinically significant.)

This may sound out of left field, but have your doctors addressed the pain on the left side of your abdomen? i.e., it could be a separate problem & have nothing to do with your other symptoms. I believe that diverticulitis is perhaps the most common GI problem, and that it presents with left-side pain... (Only a thought, as I'm just a dumb patient!)

I hope you post again to let us know how you're doing. I have my fingers crossed for you, sincerely, Vee

Old 02-12-2013, 03:41 PM   #3
Join Date: Feb 2013
Location: New Jersey
Posts: 5
JLB78 HB User
Re: Could they be right? Could i be crazy?

Thank you for your kind words and concern Vee. It turns out that the Antibody Receptor test came back negative (surprise, surprise). I figured this meant Myasthenia Gravis would be ruled out but the doctor is not convinced with this result as she said this is why it is so hard to diagnose any auto immune disease, they tend to be present one time then go away for periods of time. She prescribed Mestinon before the results came back which seemed to take care of the severe left eye droop and so far no other symptoms have appeared. Was it the medicine or was it simply R&R for two weeks straight?

I have a follow up with the doctor this Thursday and hopefully she can answer some questions. Vee, I had brought the discomfort I was having on the left side up in the past, but I was always told there is nothing significant on the left side to worry about and that they would be more concerned if it was on the right side. I returned to work last week figuring that would be a good test, and am hopeful the symptoms I suffered from years ago will stay away since the left eye droop is no longer present. Still have no concrete answers as to what is/was wrong but since my doctor said she would not be satisfied until we get it figured out, I will remain optimistic.


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auto immune, epstein barr (ebv), myasthenia gravis

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