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.

[Curmudgeon76]

Were the majority of your taps done bedside or fluroscopically?  I think the fear is bad just because I had such an unpleasant experience the first time around.  I imagine with the x-ray guidance the procedure will be a lot smoother since they can see exactly where they need to go.  My back hurts just thinking about it and gets tense, I'm just so nervous about going through that again.  Kit, I have also been getting some of your symptoms - feeling almost numb sometimes from the waist down, weak and like my legs are boards an I almost have to force them to move.  I get pain in my jaw and spine and weakness on both sides of my face too, and have had episodes where all the sudden I get really hot and feel like something is attacking my body, last time it was in my brain, and the room seemed to tilt and objects seemed like they were vibrating and moving.  I've been having increasingly irregular heart rate that varies from slow to fast, and autonomic testing showed abnormalities.  I'm so scared that I have some kind of disease or something, and will never get better.  It's so hard to be optimistic and keep my head above water.  

Pasty, I had a question for you - I was told that an MRI doesn't show INSIDE organs, only the surface, is that accurate?  I had an MRI of my abdomen done and they said it showed no signs of pancreatitis, infection or any abnormalities and was read as normal.  If there was literally inflammation INSIDE the pancreas or intestine, would that show?

[patsy10]

Didn't your doctor recommend percocet and valium prior to the tap?  The only thing that I think would work better is intravenous versed but I don't know if they would be willing to start an IV and do that.  Versed causes amnesia so people don't remember unpleasant procedures.

[post viral kid]

I understand your fear of spinal/lumbar punctures.  I've had 8 in the last 7 years.  Have someone drive you, and ask your doctor to use the thinnest needle possible, and to prescribe some valium or if necessary an IM injection of ativan.  It really does help, and they can give you these meds if the fear outweighs the necessary.  Good luck to all.

[kitlyn]

Hi : I CAN totally identify with what you have gone through. I started out of the blue last summer of 06 to have severe sudden onset in one day of head pressure, stroke like symptoms , and severe weakness, in rt arm and hand then all arms. It went from feeling like i would pass out to not being able to walk , husband had to take a leave from his job, and  i was scared to death. I have never even had the flu that bad,. i went to the ER and to no avail  they said everything was normal, this all occured after i lost 15 pounds too quickly , which i havenever been a dieter and always thin so dr's told me that it was anxiety etc..and i continued to fail..my head wa sfull of so much pressure i thought i t or me would explode. Never had headaches.. no bad accidents.. nothing..  only thing i had was i take atenonol for MVP. I told my older mother i was dying.. i lied in bed and dr told my husband to stay w me., I finanly sawa  neuro on my own thinking i had a brain tumor..  it turns out that they found two 1.2 and 1.4 cm lesiions  one w mass affect on my brain.. I continued to have then the hot feeling no fever, and stabbing pains in all parts of my head.. I was crying and screaming for help.. no ER or hosp would admit me unless i could n;t move. I wa sclose.. the stroke like symptoms in jaw and throughout my body continued, i couldn;t go anywhere  because i would start to feel so weak, neck stiffness and also legs weakness etc.. I have never felt so close to death.  They wanted to do a spinal  but they were afraid of the unknown spots being too dangerous to do one, after i had a nother MRI 4 months later , spots had gotten less prominent, and a tumor was ruled out, i did have mass affect. The head stabbing continued but grew not as bad..I already took klonipin at 0.5 mg and also neurontin, the uped dose of klonipin helped a little. I am sorry i am not a dr. and cannot give you those types of answers only, what i ahve been through.. I am so afriad of a lumbar punture..and they may still ahve to do one, MS guy not sure its MS.. i am atypical. It s very scary.. I hope you contuniue to improveand find out whats wrong.. Peace love Kit

[Curmudgeon76]

Oh yeah, after my last LP, I'm gonna ask my PCP to give me a one pill prescription for something heavy duty that I can take before hand.  I basically wanna feel like I won't care if they chop my hand off, so not sure if there's anything specific you know of that I could ask for - as I said, it would only be one pill, something to take beforehand.  I can take Tylenol after the fact. :)

[Curmudgeon76]

Got mono in November, felt better for a few months, started feeling sick again end of March, been sick since then. :(  Yeah, Shields MRI through Lahey Clinic around here does MRI on Sundays, they're open late too.