Unanswered Questions, sickness and neurological symptoms

[Curmudgeon76]

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.

[patsy10]

I would seriously doubt a TIA at your age.  Your symptoms don't really sound like TIA symptoms.  I have taken care of many patients with TIA's.  They usually complain of weakness on one side, garbled speech etc...Did you have a fever by chance when those symptoms occured?

[Curmudgeon76]

Patsy,
I was doing some reading, and found some information that sounded almost exactly like the symptoms I experienced while in England.  I was reading about something called Lacunar Infarcts, related to transient ischemic attacks.  Is it possible that the spell of flushing, sweating and vertigo where the room felt like it was moving and spinning was actually a TIA or mini stroke?  I had read taht often these don't show up on MRI or show up as mild hyperintensities in the white matter.  Since having this episode, I find that I occasionally stutter or get confused and this never happened before.  It was really bad within the first few days after the incident.  I'm scared and feel like the doctors aren't working fast enough to get to the bottom of this.  

[Curmudgeon76]

I noticed your username.  All my symptoms seemed to start after a persistent infection, or infection like process that didn't respond to antibiotics.  Did you have a similar experience?  I never feel quite right, but I often get these flare ups where it seems a new neuro symptom appears, it almost feels like an attack when it happens, and after it's happened once, it seems like it never goes away.   Hard to describe.  

[Curmudgeon76]

Thanks for the advice, I'll ask the radiologist to take both the opening and closing pressure.  I had low pressure on my first tap and it was hard for her to get a flow, but then again, she didn't seem to do a very good job anyway!  90 minutes and 4 attempts and a lot of pain.  I'm so worried about going through that again, but I'm hoping with the fluroscopy they will be able to get to the spot without hitting nerves and all that fun stuff.  Post Viral Kid, I know you said you had 8 LP's, were the majority of them done bedside or with fluroscopy?  I know you mentioned something about anasthesia, was that just for the blood patch?

[post viral kid]

I have done them both ways, but have recently discovered from from neurologist who is a headache specialist that the best way to get an accurate pressure is to lie on your side in fetal position, and make sure to get both opening as well as closing pressures.  He uses a smaller needle so the trauma was not that great, and the injection of Ativan and some valium he gave me helped a lot.  I just had my second blood patch yesterday since the migraines were just being vicious.  I will know in 72 hours if it is effective.  The first one I had was under anasthesia, and I was awake for the second one. I would choose the anasthesia next time.  It was not a lot of fun, but the flouroscope is used during this procedure to make it a little easier.  I'm just not tolerating a lot of extra pain right now...Are you seeing a neurologist who is a headache specialist?  This new doc has a much better understanding of the pain, and I am not dismissed as being crazy, as I have been other times just like many of you.  I wish you luck and prayers.

[patsy10]

I can't tell you for sure but I think so because it shows inside the brain and inside the spinal cord.  I remember one of of my MRI's stated "no inflammation of the spinal cord"  If your organs were inflammed it would show.  I think the whole organ would be inflammed and not just the inside. I think it is probably the best diagnostic test for these kinds of things.  That feeling you described above about your legs.  That is one of my constant symptoms.  Pretty disturbing isn't it?  Feels like you have to consciously make your legs move.