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 asked the nuclear tech today.  She said pet is basically for cancer.  On rare occasion it can be used to check the heart ffor viability but very infrequently.

I was thinking about your episodes which sound more like equlibrium problems than stroke symptoms to me.  You could talk to your doctor about vestibular testing.

[kw47781]

i just wanted to say that i've been following your topic for a while, and i have very similar symptoms.  here is my post, where the doctor responded - http://www.medhelp.org/posts/show/332405

i've already had most of those tests done that he recommended, but i have done some research, and i am having the following tests done.

lymes (including western blot)
rheumatoid factors
another complete metabolic work-up
MRA (an MRI with contrast that specifically looks for blood vessels) of brain

i have also been referred to the rheumatology department UNC Hospitals in north carolina.  i'm dreading a CFS diagnosis, but i still have hope that its something else, something treatable.  especially with the severity of my heart symptoms.  over the past couple days i think my heart has skipped over 3 beats in a row at one time.  

if i find out anything helpful i will post it here.

[patsy10]

I'm glad about your good news today.  That's one less thing you have to worry about.

[Curmudgeon76]

My symptoms didn't resolve quickly.  I experienced gidiness and objective and subjective vertigo that lasted for a week.  I still haven't gotten completely over it.  Like I said, when I get off an elevator I still feel that "pulling" sensation that you get with a fast moving elevator and it feels like the room is moving.  Even if I can't get one the same day, if I have another episode I'll try to get my neuro to order an mri within 48 hours.  Got the spinal results back and there was only like 1 white cell in one tube and zero in another.  The red counts increased with each tube, but then again, the doctor performing the tap was moving the needle and withdrawing the fluid.  My neuro called me to give me the good news as he said, which he assured me, means no active infection.

[patsy10]

I'm really not sure what those episodes that you are having are.  Does your neuro know about these?  Did you ask him what they were?  It almost sounds like an equilibrium thing.  I get the off-balance episodes.  It feels like I'm falling to the side when I walk. Is it anything like that?  The ER will probably do a CT scan and not an MRI.  At least thats what they did in the ER I worked in.  They never ordered STAT MRI's.  They may do this at trauma centers though.  I really don't think your smoking and BP would be affecting you at this point .  Not unless your pressure was super high.  I think if you had white matter damage it would show up on MRI.  I think something would be showing on MRI with these episodes you are having if it were some kind of permanent damage. I don't think it would have gone away.  I still wonder what the report actually said.  Actual strokes usually cause weakness or numbness on one side of the body and it doesn't resolve quickly.  The only exception would be TIA's (trans ischemic attacks) which last for short periods of time and then resolve.  I would definitely ask your neuro what he thinks.  Your problem, whatever it may be, is quite complicated and puzzling to me. Regarding the PET scan, the only thing I have ever seen it ordered for was cancer.  It's used to look for metastasis to other areas of the body.  I will ask one of the nuclear tech's I work with this week.  I know they have done lots of these tests.

[Curmudgeon76]

Patsy, what is a PET scan?  I'm under the impression it shows even more detail than an MRI, and that it's also considerably more expensive.  Would this shed any more light possibility on WHAT exactly those spots on the MRI are?  Also, if I have another one of those stroke-like episodes, should I go to the ER immediately and ask for an MRI then?  Perhaps that would show something that immediately after that partiallly resolved on the later films.  When I was in London, I had that tipping, vertigo sensation, giddiness, and felt like I had a stroke.  The symptoms lasted a week and almost completely resolved, but now, when I get off elevators for example, the room still feels like it's moving.  Could this be result of permanent nerve or white matter damage?  I've heard of white matter infarctions.  I may be young, but I DID have high blood pressure, have been a smoker since I was 14 (I was a pack and half a day smoker at 18), was very overweight (mostly due to the high doses of Zoloft I was on) etc.