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Unanswered Questions, sickness and neurological symptoms

Greetings all,

This is a a bit long so bear with me.
I'm a 25 year old male. I contracted mono in November and got a very bad case of it and didn't take adequate time to rest. I was only out of work for 2 weeks and during that time was somewhat out and about.

Symptoms of a new illness presented in March, starting with a canker sore, and progressing to flu like symptoms. I noticed greenish/brown mucus and tooth pain and went to doctor for an anti-biotic (I think Bactrim). I took the antibiotic which seemed to clear up what I thought was a sinus infection but I still wasn't feeling better and my glands were very swollen (they still are too a degree). The doctor prescribed Augmentin due to the remaining swollen glands and remaining flu like symptoms.

On April 16th, I had tingling in my hands and feelings of pure exhaustion. My blood pressure was lower than normal (for me) and I felt somewhat light headed. I had my girlfriend bring me to the ER where I had labs, urine and chest x-ray, all of which were normal.

A few days later, I was working in art class (still feeling very sick) with an x-acto knife that wasn't especially clean and jabbed myself in the thumb. It'd been 11 years since my last tetanus booster. I didn't get one right away, and the next day, experienced a muscle twitch under the skin while I was at work. I immediately panicked and went first thing the next day for a tetanus shot.

Over the course of the neck few weeks, I noticed muscle weakness, twitching in the jaw and neck stiffness, and an increase in heart rate (especially with light exertion and going from sitting to standing position) and general feelings of exhaustion. I went to my primary care and expressed my concern about Tetanus, but Dr. said due to my proper vaccination history and treatment within 48 hours of wound was a near impossibility. My doctor suspected Lyme disease when I mentioned I had noticed a few red bumps on my neck upon waking a month or so earlier, and prescribed me a 3 week course of Doxycycline but symptoms did not improve.

I found that I had no temperature even though I was certain I must have a fever (hot flash feelings) and it was often subnormal (sometimes as low as 96.9) The highest I ever had was 99F. The weakness has since progressed to twitching all over my body and tenderness in muscles. I have some swelling or slightly increased muscle tone in the jaw and pain in the lower jaw and teeth (having two horizontally impacted bottom wisdom teeth that never got removed probably doesn't help) I was experiencing (and still am) jaw and throat tightness, neck stiffness, and what the doctor referred to as "trigger points" in my back. I've had some spasticity and my muscles feel heavy and I have burning sensations throughout my body that seem to come and go and affect different areas at different times. I was diagnosed with PAC's (benign heart palpitations) in 05' and they have since gotten worse, and I sometimes have feelings of shortness of breath or labored breathing and palm sweating. The symptoms seem to be getting progressively worse slowly. I'd been having some constipation as well as weight loss (a lot of which is due to poor eating habits from the severe anxiety that's been accompanying this). Dr.also put me back on Augmentin again for 2 weeks, and when I expressed further concern about the tetanus, a one week course of Keflex (I am basically a walking anti-biotic: could this be killing good bacteria and causing more harm than good?)

I'd have every test in the book (just about) including: multiple labs, CBC with differential, c reactive protein, sed rate, two lyme disease tiders, a comprehensive western blot lyme test, two HIV tests, multiple blood tests for muscle enzymes and functions, EMG muscle testing, MRI of brain (which revealed slight abnormality which neuro said was consistent with CFS or lyme), test for Lupus, rheumatoid panel, allergy test (blood test), CT scan of everything from base of lungs down (due to constipation and tenderness above groin area), and echocardiogram (heart ultrasound), two EKG's, and all results (except for the MRI) have been NORMAL. My white and red blood cell counts however were on the low end of the normal spectrum, my sed rate was very low (1) which I was told was good. I've been taking Lexapro and Xanax to try and manage the symptoms but I've been on the Xanax for several months and my body is building up a tolerance to the dose I'm on. I'm been taking tylenol like it's candy. The muscle symptoms range from painless twitching, to stabbing pain and tightness which can be quite painful at times.

I've seen two neurologists, both of which feel my symptoms are not a result of a neurological disease (though the second doctor had a much better bed side manner and is ordering a spinal tap to rule out anything potentially serious such as MS or ALS), and I'm having a soft tissue MRI of jaw and neck.  I've seen two infectious disease doctors who assured me Tetanus is impossible considering how long it's been since my injury.

I'm very confused, scared and am convinced I'm dying. Am I alone in this? Has/dose anyone else experienced these type of deabilitating symptoms here?  Do these symptoms sound like they could be a form of some type of toxicity?  I feel like I'm getting progressively worse.  Any advice on where to go next would be greatly appreciated.  Thanks so much in advance.

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Avatar universal
Just an update.  I got the results of my 2 day ambulatory EEG and according to two neuros who looked at it, it was normal.  I also had evoked potentials done which also came back normal.  I'm concerned because along with my fluoroscopic spinal they want me to have a lumbar myelogram.  I'm under the impression that this involves a potentially hazardous and unpleasant injection which can cause severe headache, and potentially seizures.  I've had iodine dye before for a CT and had a normal reaction, but I'm concerned because I read that this injection can cause nausea and vomiting, headaches and even potentially seizures.  I've concerned about the necessity of this and the risks.  Do you know anything about this test?
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Avatar universal
Yeah, my bedside tap was pretty much hell.  I'm probably gonna go in there for the fluoro one expecting it to be murderous and actually find that it isn't too bad, it's just the anticipation and fear after having such a absolutely horrible experience.  I was watching House MD with my girlfriend last night, and it an episode where a boy got SSPE as a result of a reactivated Measels infection, so of course they had to show like 3 different LP scenes, I was like "I'm leaving the room now, call me when it's done". ;-)
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Avatar universal
Yes it was absolutely dreadful!!  If you have an active infection it should show up.
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Avatar universal
Sounds like this is the way to go.  I am assuming your non fluoro attempt, like mine, was dreadful?  That's why I'm so reluctant to do it again but if there were a viral infection in the CNS wouldn't there be a true elevation in cells in the CSF?  If there is any kind of infection I know it could be serious, so I'm kind of battling mentally over whether or not to go through it again.
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It was completely painless except for the injection of the local anesthesia.
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He is much better, very thorough and very nice.  I'm so nervous, just the thought gives me chills and makes me nauseated.  Aside from them having to put in a second needle and withdraw the fluid, was the first part of the fluoro tap relatively painless?  I got the shooting nerve pain with the bedside tap.  Did you find that the actual initial insertion was less painful with the fluro tap?
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