Research dysautonomia. It's not well known by the medical community. There are very few specialist. I have neurocardiogenic syncope and POTS (both are forms of Dysautonomia) and I have all these symptoms. It can be genetic or brought on by other things...like Lyme Disease, for example.
Is anyone from this thread still active? I am having similar symptoms and very curious as to if there have been any conclusions / resolution for anyone here.
Is anyone from this thread still active? I am having similar symptoms and very curious as to if there have been any conclusions / resolution for anyone here.
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
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.
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!!
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.
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.
I'm glad about your good news today. That's one less thing you have to worry about.
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.
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.
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.
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.
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.
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.
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.
I forgot to add vasculitis can cause those MRI changes too.
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.
Patsy, Did you have any complications after the tooth extraction, such as nausea or vomiting?
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. :)
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.
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?
Check this out regarding lyme:
http://www.geocities.com/gallisto1/Burrascano.html
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!