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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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You could ask the oral surgeon about the antibiotics.  I know they didn't give me any when I had mine out but mine were not impacted and it was just like a regular tooth pull.  My brother had his cut out and I believe he was given an antibiotic afterwards.  When you hold your breath and then let it out the heart rate slows down for a few seconds then goes back up again.  This could have been what you felt.  You actually found a facility that does MRI on the Sunday...amazing.  How long have you been sick now?
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Also,

I don't want anyone to argue.  I just came here to look for advice to get a feeling of companionship and to feel like I'm not alone.  I know this thread has gotten really long but I feel like here at least I can talk to other people who have similar symptoms or who can understand what I'm going through.  Ggreg, in regards to the mono, I said I questioned whether it actually was mono because of a NEGATIVE mono spot when I first started really feeling awful (swollen tonsils, myalgia, etc) but positive atypical lymphocytes.  I had an EBV tider done only last month and my doctor said it was actually quite high, so I suppose that's a good indicator that what I actually had WAS mononucleosis.
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I think this thread is the longest one I have seen on this site.  There is a lot of good information here for people to sort through if they are going through something similar.
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Cur,
Just go to the dentist.  I don't know what your illness is, I'm just responding to parts of the thread that stick out to me.  I really am gonna go now.
GG



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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.
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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. :)
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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
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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.
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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.
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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?
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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.
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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.
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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?
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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.  
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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.  
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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?
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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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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  
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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.  
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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.
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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.
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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.
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They don't routinely prescribe steroids without a definite diagnosis.  They cause some pretty bad side-effects.  Also, steroids suppress the immune system which can make an infectious process worse.  So I believe if your condition is infectious it may cause more harm than good.  You could talk to your doctor about it though.  I felt the same way as you about the doctors moving too slow.  I have found that if you don't come in the office in a wheel chair they think you are ok and drag their feet.  I think if you look healthy and muscular like I do they dismiss your symptoms right off the bat.  I'm not sure that you look healthy though with your weight loss etc...
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Yes, I look healthy.  I'm at my goal weight for my height based on BMI standards and what not, but I'm only that way because I CANNOT gain any weight.  I'm 5'6" ~150 pounds, before I got sick I was about 165.  Doctors seemed to not be the least bit concerned that all carbs I eat go right through me that I cannot put on any weight, etc.  I feel like I'm going mad.  Is it possible that this could be caused by the tetanus vaccine?  I know you can't get tetanus from a vaccine but if I had a shot while my immune system was down could it cause neurological illness?  Have you ever seen a case of that?
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Hi... I forgot to mention all my symptoms worsened after I took a flu shot. I think my immune system got messed up after the shot. Tetanus shot in your case should be concern and might have caused an immune response not generally seen. Take care ...
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It is possible to have neurological reactions to vaccines.  Have you seen those programs about kids who become autistic after their vaccinations?  It's rare, but it happens.  Incidentally, the first time I had this illness years ago it was after a hepatitis B vaccine.  The same thing happened to a guy I  work with.  However I had bullseye rashes prior to all of this as well so who knows.   Regarding doctors, honestly, I think very few of them really care.  Most of them are "just doing their jobs".  So I think it's up to us to be proactive regarding our health care.  They really just don't care for the most part.  There are a few exceptions though.
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This just sounds oh so familiar for Lyme... perhaps your three week antibiotic treatment was not enough time especially if you've had it for a while. Remember that the tests are subjective and that depending on who is reading the bands they will interpret them in different ways. It is extremely common to have a worsening of symptoms on antibiotics with Lyme before you start to improve. It's called the Herximer reaction. I don't think I'd drop the ball on that...
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Just got back from my fluoro LP. It went really well.  The doctor was extremely good and had the needle in place within five minutes.  I experienced a sensation of pressure but no pain.  The only discomfort I felt is when they were drawing the fluid out.  I was in an out within 45 minutes, and getting the fluid was the longest part because my pressure was low.  Now I just need to stock up on gatorade. :)
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I have thought this is very suspicious for lyme from the start.

Cur, glad the tap went well.  I hope you don't get a headache.  Keep drinking fluids!
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Check this out regarding lyme:
http://www.geocities.com/gallisto1/Burrascano.html
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Patsy and Ggreg,

Just got back from the oral surgeon.  He looked at the X-rays of my wisdom teeth and literally said "oh my God".  He said at my age they don't like to take teeth out but he said there is an active ongoing pathologic process (chronic infection) and the only thing keeping it at bay is my antibiotics.  There is complete bone loss between the back molar and the wisdom tooth.  He said in my case the benefit to the patient far outweighs the risk and that they MUST come out.  He asked me if I've been feeling ill at all and I said the past few years I've been noticing different symptoms, feeling like I have a fever when I don't, or low grade fever etc.  He said it was presumptuous to assume that the teeth are the cause of my all my problems but not impossible.  I wonder if there IS an anerobic infection in my jaw, I suppose that could explain the feeling sicker when taking the Metronidazole.  Maybe it's a long shot that this is responsible for all my symptoms, but like my neuro said, if this was a virus in my CNS I'd most likely be dead or recovered by now.  Any thoughts on this guys?
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You know how I feel about this one.  I personally feel it is not the cause.  If your whole body was infected this bad with a bacteria it would show up on your lab work with an elevated white count.  I can't remember if you saw an ID doc or not.  A blood culture (which I don't think you have had) would grow whatever bacteria you had systemically if it was there.  There is no way this could cause lesions in your brain like you had on your first MRI unless you have bacterial meningitis from your tooth problem.  I still don't think it shows up as white spots though.  If you have it the spinal tap will show it.  It sounds like you need them out and you will feel better as far as your mouth and jaw is concerned.  I do think it could cause low-grade fevers and a general ill feeling but do not think it would cause neuro problems.  Regarding flagyl, it has lots of side-effects.  Feeling ill after taking it is common.  Also, a die-off reaction (herxheimer) would cause this.  You gets this if you have lyme or other infections.  My neuro also told me a CNS virus would kill me rapidly just like your doctor said.  From what I understand, it's not a cns infection that causes the symptoms but the "immune response" to the infection. I still think you could have lyme considering where you live, the story about your neighbor.  Have you researched lyme?  I'm no doctor.  This is just my opinion.  Also, I had my wisdom teeth out at 40 and had no problems but they were not impacted.
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Could those white spots actually BE something in my brain?  When this started, in June, I actually had the sensation like something literally shooting up my spine into my brain and everything started spinning and the room got really loud.  This happened again in England and it was a bilateral sensation of the room tilting left, then right, then followed by sweating and vertigo.  The spots are very faint the neuro said.  Could it actually BE something in there, and not actually white matter?  Sounds far-fetched I guess.  Also, I was under the impression that systemic neuro symptoms caused by anerobic bacteria are a result of toxins produced BY the bacteria, not the bacteria itself, and that in ongoing chronic illness white counts can be low (which mine were).  While neither of us are doctors, you're a nurse so you'd know better than me. :)
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Patsy, Did you have any complications after the tooth extraction, such as nausea or vomiting?
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No problems after the tooth extraction except it hurt a lot about a week after.  I had mine pulled under a local anesthetic. You could have nausea as a result of being put under anesthesia. You will have to be put under anesthesia since yours are severely impacted.  I would think  he would treat you with strong antibiotics as well.  Did you get the impression that he did or didn't think your teeth were causing all of this.  I think you will know after they are removed.

Regarding the bacteria,  yes the toxins cause symptoms (bad symptoms) but someone could be acutely septic and a blood culture will actually grow the bacteria they are infected with.  And yes again the white cell count can be low if someone is very immunosupressed from a severe infection.  The CD 57 count will be very low in severe infection, particulary lyme.

Regarding the MRI.  The recent one was normal right?  What exactly did the first one say?  Do you have the report?  What did the new neuro say about it?  At your age it should be normal.  The white spots could be inflammation??  I read migraine headaches can cause this. I doubt there would actually be something in there but it could have been inflammation.  It depends on how the radiologist worded it in the report.
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I forgot to add vasculitis can cause those MRI changes too.
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The second MRI was read as normal but it was a different radiologist and center.  I got most of the tap results back and they were all normal.  If there were something actually in there, or something reducing blood flow, that would show up on a SPECT scan correct?  I'm gonna ask the doctor to do one.  If, even though it's very unlikely, something had gotten into my brain, how would they determine that, and how would they get it out?  Would it even be possible to?  The days prior to that sensation of something literally shooting up my spine and into my brain, I was having racing heart, shortness of breath, something didn't feel quite right and then that hit me.
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You've certainly done your homework.  I think maybe you should do something in the healthcare field after you recover!  I think you are very intelligent and of course you will be an expert after all the research you have done.  Correct about the spect scan for blood flow or perfusion.  I know I keep mentioning lyme and you're probably sick of hearing about it but it gets in your central nervous system, causes vasculitis, all sorts of multisystem problems.  It's very had to detect but does show hypoperfusion on a spect scan.  If you read that link i posted above you'll see it shows up in spinal fluid only 7% of the time, even if you have it.  If you had a bacterial infection in your brain/cns you would need antibiotics to get it out.  There is a possibility they may never know what is causing your problems.  I'm a prime example of that.
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yes, I've done a lot of research.  When I first got sick, I felt like something was racing through my body and I was having very rapid heart rate and a lot of anxiety, my jaw was also swollen (come to find out I've had a constant ongoing infection in my mouth since then according to my oral surgeon).

I was told that it is possible for gaseous or semi solid particles to get into the blood from a dental infection or other source.  These then circulate in the blood and with nowhere to go to escape, settle somwhere, such as the heart or brain.  I was told it is possible to have chronic brain inflammation as a result of this happening.  I believe this is called a chronic embolism.  Is this a possibility in my case?  I'm going to ask the neuro to do a SPECT scan and another doctor at the ER (I headed there the other night because my symptoms got bad, what a waste of time) told me I should be referred to a neurosurgeon to rule this out.  Still awaiting my CSF lyme results.
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Yes, this is true.  You may remember I mentioned that in an earlier post  regarding infecting the heart.  What I have seen in my experience is dental infections going to the heart valves.  They get infected and form "vegetations" which  can break off and embolize to the brain and cause strokes.  I saw someone with a weakness on one side of the body from the stroke.  I think your brain MRI's would have shown strokes if they were there.  A CT scan would show better, I think.  I think you would be far worse off by now but I'm no expert.  If it's in the heart there is usually a murmur and the problem can be seen on an echocardiogram.  This is very rare.  I think I I have seen this only once.  I don't think a SPECT scan would show a stroke.  I think it just shows general perfusion to the brain.
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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.
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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.
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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.
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I'm glad about your good news today.  That's one less thing you have to worry about.
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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.
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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.
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Hope you're feeling better by now.  It sounds like you have CFS-there have been studies where a percentage of people who have Epstein-Barr go on to develop CFS (you can find these on-line, look for Dubbo studies).    There are experimental antiviral treatments if you have elevated Epstein Barr and/or HHV6 titers, check these out:
www.cfsviraltreatment.com
www.hhv-6foundation.org/hhv6cfs.html
For general info check out www.immunesupport.com
Hope this info helps you out-best of luck!!
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I became paralyzed after taking H1N1 vaccine.  I am not suggesting that people should avoid vaccines but they should be informed more of possible side effects.  I know that my family will never have another one.
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let me start by saying have any of you rulrd out heavy metal poisoning?such as lead,mercury,candium,etc all of these smptoms u are experiencing could be hmp.ask your doctors to give you the blood test to see if you have it and if you do you can order a clay bath from ll magnetic clays .
good luck
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