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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.
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.
I think you have very good point. I think polymiositis should be a concern for me. I will confirm with my neuro again. All the Neuro's I have met think I need not undergo any biopsy as it will not yield any outcome. It is one heck of a task to convince them.
If you felt better after antibiotics then it sounds infectious. Lyme or another bacteria. I would seek further antibiotic treatment. I have also improved on antibiotics. Also wanted to let you know a friend of mine had all sorts of symptoms like us. All her tests were normal including MRI's, CPK , EMG etc...Anyway, she had a muscle biopsy done to rule out mitochondrial disorders..She didn't have that but what she did have was myositis. Confirmed by muscle biopsy. Her cpk's have been and still are normal. I would like to have the biopsy done as well. I'm just too tired and sick of doctors to pursue it right now.
Hi,
I had all the virus tests done(Mono, HIV, HSV, Hep, Lyme and quite other few cannot recollect) and all of them negative. I am from San Diego area and cought the illness probably in Tijuana after eating some road side junk food. Not sure though. So after ruling out to a large extent the possibility of a viral infection, I thought it might be Lyme and Mono together and took a full course of antibiotics(doxy etc) and felt lot better. I no longer feel ill, except for the progressive weakness in muscles all over and regular twitches. Sometimes I can barely sit on a chair as my muscles have become sore and weak. I suspected it might be ALS and went to ALS research centre at CPMC in SFO and the doc said he does'nt think ALS as my nerve conduction and EMG came out normal. Also my CPK levels are normal. The doc at CPMC prescibed Cymbalta and Lyrica and I don't see any benefit taking this. I regularly go to jog even it hurts hoping to strengthen my muscles, but no positive results as of yet. Yes, I did have normal brain and spine MRI.
What about you, feeling any better. I am thinking it might have to do with some autoimmune disorder in my case. I am visiting another Nuero this week to check his opinion.
I had all the virus tests done(Mono, HIV, HSV, Hep, Lyme and quite other few cannot recollect) and all of them negative. I am from San Diego area and cought the illness probably in Tijuana after eating some road side junk food. Not sure though. So after ruling out to a large extent the possibility of a viral infection, I thought it might be Lyme and Mono together and took a full course of antibiotics(doxy etc) and felt lot better. I no longer feel ill, except for the progressive weakness in muscles all over and regular twitches. Sometimes I can barely sit on a chair as my muscles have become sore and weak. I suspected it might be ALS and went to ALS research centre at CPMC in SFO and the doc said he does'nt think ALS as my nerve conduction and EMG came out normal. Also my CPK levels are normal. The doc at CPMC prescibed Cymbalta and Lyrica and I don't see any benefit taking this. I regularly go to jog even it hurts hoping to strengthen my muscles, but no positive results as of yet. Yes, I did have normal brain and spine MRI.
What about you, feeling any better. I am thinking it might have to do with some autoimmune disorder in my case. I am visiting another Nuero this week to check his opinion.
Break, I know how it feels when you're losing hope, it's discouraging. You said you had a virus in December eh? That's around the transitional period from when I got over the "mono" and when I got some new illness. If you don't mind me asking, what part of the country do you live in? There was some weird thing going around at my work - an immunocompromised woman I worked with caught some nasty virus and died as a result of myocarditis, and a young woman I work with felt down at work and went into convulsions for no apparent reason and recovered. I work at Wal-Mart and I swear that that place is a breeding ground for illness. Did you have a brain MRI or lumbar puncture? Do your symptoms slowly seem to get worse? Did they find any abnormalities on any of your tests? Cheers, don't give up, maybe we can get to the bottom of this.
Hi,
I read through this long thread as I have had exactly similar symptoms and still continue to have muscle twitches all over with severe nueropathic pain. I have tried similar treatment options like you(Cymbalta, Augmentin, Xanax, Lyme treatment etc). All my problems started after I had a severe bout of viral infection last december. Only test I have not gone through is muscle biopsy and my nuero and GP think it is not necessary. I am losing hopes by the day. Only option left for me is to pray and pray.
- Cheers
Break
I read through this long thread as I have had exactly similar symptoms and still continue to have muscle twitches all over with severe nueropathic pain. I have tried similar treatment options like you(Cymbalta, Augmentin, Xanax, Lyme treatment etc). All my problems started after I had a severe bout of viral infection last december. Only test I have not gone through is muscle biopsy and my nuero and GP think it is not necessary. I am losing hopes by the day. Only option left for me is to pray and pray.
- Cheers
Break
No, I don't think so. I had flushing and sweating followed by vertigo (objective and subjective). At least, that's the closest I can describe the symptoms based on what I read about vertigo. I did some reading and found a case of a woman who developed autonomic neuropathy with sensory involvement following a viral infection, lumbar puncture ruled out infection and she was treated with steroids for several months. After treatment, her symptoms completely resolved. I was reading about MS and it said that often times an MRI will show something, and the disease can exhibit with worsening of symptoms occuring about a month apart. I'm not trying to diagnose myself, I'm just trying to be proactive. I feel like doctors aren't taking me seriously or at least not moving fast enough and I don't know what to do, I'm scared to death. I've also heard about CIDP which Quix mentioned. Is the steroid treatment something I could discuss with my neuro, that they may consider trying? As much as I am dreading it, I am absolutely convinced now that the tap needs to be repeated.
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