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Answering your questions, the progression that you have described is extremely slow and most of the diseases which would have caused them have already been ruled out and they don't fit into your clinical picture. I did mention some enzyme deficiency disorders which are extremely rare and some mitochondrial diseases which may cause these symptoms. But again they don't completely fit into your clinical scenario. Your symptoms are varied, blood cancers are unlikely because they would have shown up on the blood work, throat cancers are also unlikely as they would have caused symptoms like coughing up blood, hoarseness of voice, growth visible inside the throat etc.
The problem here is that with almost all of these causes something should have shown up in the tests that you have done over the past several years, the 3 Tesla MRI scan is essentially a last resort test to determine if the brain is actually involved or not. Similarly, the cervical spine MRI is also the last resort test to rule out cervicogenic causes for your problems. Essentially we are getting backed into a corner here, there aren't many possibilities left.
Secondly, without an examination, it is difficult to narrow down the field to some causes as I am going on clinical symptoms without the correlating clinical findings which we see on an examination. I think the next best step after getting the above tests done is to actually visit Mayo Clinic or John Hopkins center with your complete clinical history and examination findings. They have more experience in dealing with rare undiagnosable conditions.
Cancer is unlikely, enzyme deficiencies possible but less likely and same holds true for mitochondrial diseases. I dont think an EEG would help UNLESS these episodes you have are a rare form of a seizure disorder, which could cause these sort of dizziness. A video EEG or sleep EEG may be more useful in that situation.
I dont think you will lose consciousness at all.
Could be nystagmus, but without an examination its hard to say.
You wont lose consciousness, they no reason to think that you will lose consciousness based on these tests. Yes you may faint because of other reasons like anxiety, stress, dehydration etc but truly losing consciousness and falling into a coma, i dont think that will happen.
Cancer of any sort, be that blood or otherwise would have shown up on these repeated blood tests. But if you want to rule out everything then get imaging of the chest, abdomen and pelvis done such as a CT scan this would rule out any and all abnormalities in the body.
You dont have encephalopathy because you DONT fit the criteria for encephalopathy at all. Your symptoms are NOT consistent with encephalopathy. if you had encephalopathy even the mildest form you would not be talking to me here.
Chest xray picks up on the large abnormalities, a Ct scan picks up on everything in these regions. But you can go for a MRI if you want that will give more detailed images.
I don't think encephalopathy is a possibility to consider here, there is no reason to consider that.
No, don't go for a 3 Tesla scan on the chest, abdomen and pelvis, just the brain. A 1.5-Tesla scan on the chest etc is more than enough. The 3 Tesla on the brain is only because your previous scans were negative. And the brain is the region where a 3-tesla scan MAY reveal something
Yes an MRI of the neck would catch cancer in most cases but the ideal test is an endoscopy
Food allergies again possible but they would usually cause other symptoms like diarrhea, rashes, itching or shortness of breath rather than your current symptoms.
In the sinuses usually yes but not in the throat or neck unless the MRI was done of the neck or throat as well. When i said a MRI would pick up on throat issues i was talking about THROAT or NECK MRIs
Those are scans of the brain AND the cervical spine, the neck is not commonly included in a simple brain MRI unless specifically requested.
The tests which can be done include MRIs of the brain, chest, abdomen and pelvis
These would be a start.
Any abnormality such as a hidden BENIGN growth which can release hormones which can lead to this problem.
The best hospital in washington state is the university of washington medical center in seattle.
I dont believe you will pass out and i think the scans are the things which i would go for, it would rule out almost everything short of genetic disorders, mitochondrial diseases etc. I dont believe a EEG is necessary but i think you should get it done only to counter your anxiety over the possibility of encephalopathy.
Their hospital would definitely have a 3 Tesla MRI, but i would recommend scheduling an appointment with their neurologist rather than going through the ER/
Because that way a neurologist can also examine you thoroughly, going through the ER gets you just the immediate tests and not much attention or evaluation of the whole history. If you still want to go through the ER you can. And the MRI of the abdomen would pick up on everything.
Mitochondrial and genetic issues would require specialized testing not offered in ANY ER, it would require a clinical examination and a neurologist then advising it. ERs everywhere are not thorough, the ER is place where the immediate life threatening things are given the most attention, as soon as they determine that there is no life threatening issue, you move to the back of the list. An ER is designed to deal with immediate issues which is why most ERs would not go into depth of a long several years long history.
Schedule an appointment with a neurologist in Washington university you need a thorough evaluation.
Ask your local doctor for a referral so that insurance can cover you.
That is why a new neurologist should assess you thoroughly so that he can look at the case via fresh eyes.
At the moment no,.
Im sorry? send me what?
Thank you, ***** ***** would be appreciated and a good review, i just hope we get to the bottom of what is the cause for your symptoms.
Should be an option on the top right where you have the stars to rate me
No actually a bonus was not added on this question.
Anyway, this vision issue does require a neurological examination with visual field testing.
Thank you for the bonus , i got it.
Sorry for the late response i had to see a patient in the ICU.
Your case is difficult to say the least, nothing is showing up on the tests and your symptoms dont fit into one diagnosis. The feeling you are describing is most consistent with BPPV but the exercises dont help. It can also be due to blood flow via the vertebral arteries but the doppler was normal. Maybe a MR angiogram would help. Ill be honest we are grasping at straws here, nothing is fitting in correctly.
A MR angiogram would completely rule out anything to with vessels so we wont need to revisit that again. Similarly the 3 Tesla MRI of the brain would rule out the brain as a cause completely. A MRI of the cervical spine can help out cervicogenic dizziness. We have already ruled out autonomic neuropathy, metabolic causes are less likely as all of your blood tests come back as normal.
Ill discuss your case with a couple of my colleagues, with your permission ofcourse and see if they have some ideas.
Lets see if someone else can come up with some ideas.
I will get back to you when i talk to them
It will take me a couple of days but i will let you know as soon as i have something,.
I dont believe you need an ER, you are going to see your doctor tomorrow anyway so i think we can wait.
In your case, i would keep an eye out for worsening severe headaches, vomiting, blackouts, complete loss of vision which may precede loss of consciousness.
I dont believe so.
Not really, those symptoms would warrant an immediate ER visit or development of numbness or weakness in one side of the body or severe dizziness which does not even allow you to stand.
That should not lead to serious issues like coma etc.
You are welcome, just hang in there.
The copper tests would show low ceruloplasmin and high copper levels in the urine or blood in order for wilsons to be diagnosed.
The test is named as FREE serum or urine copper levels. But essentially they are looking at the copper levels.
Fasting is not needed for most blood tests, only for specific blood tests so i dont think you need to fast for tomorrow.
The tapping is unlikely to be a sign of any neurological disorder, just force of habit i think.
Also the dried blood can be due to dryness in the nasal cavity or commonly due to trauma via picking the nose.
Thats fine, i understand .
It varies depends on how busy the ICU is, most of the time i have residents and fellows handling things im needed not as often but sometimes i have to stay back, as i said it varies.
MR angiogram is a test which does NOT require any invasive procedure to be done, it is essentially a MRI which looks at the vessels.
Yoiur tests are normal so you DONT have Wilsons for sure.
The Angiogram can be done even without contrast so it is not necessary to get injected with contrast material in most cases. The contrast is only necessary if the MRA without contrast does not show good pictures and they can determine that during the procedure itself. However usually without contrast is good enough,
No, nor night now, lets wait for the tests first.
At the moment you can go to the gym and run too. I dont think you would notice any difference with running or standing even if the vertebral arteries are mildly involved
That you should avoid.
They can but they would also cause additional symptoms as well. We are looking into rare causes here.
You should not pass out that is correct.
Ask them to do a complete neurological examination and document any findings that they have, a FULL neurological examination which would check everything including the cerebellum and the cranial nerves. This is a clinical examination, we need clues as to what might be wrong and an examination is the ideal thing to do.
A PCP can do a neurological exam but a 3 Tesla scan would need a neurologists approval.
A MRA should be done for bothe the brain and the neck if you are getting it done. Atleast we can rule out any vascular issues conclusively in the region.
If insurance is not covering it, then i think we can wait.
Yes the neck one is more important here, the brain one would help in ruliing out any small aneurysms which may be compressing certain regions of the brain leading to your symptoms.
It would have been which is why i said we can wait for the brain MRA
But very small aneurysms can be missed, less likely but possible.
It varies anywhere between $1k to $3k. It is an expensive test which is why i think we can wait.
That would be dependent entirely on your insurance plan, hard to say really.
Well if it is normal then we have the MRIs of the chest and abdomen to look for other signs.
If it was a metabolic issue or hormonal issue it should have shown up in the numerous tests that you have had done.
I have talked to just one person so far and he did not have any new ideas which we have not gone over. Ill talk to some other people as soon as i can geta hold of them.
If it was ammonia then the liver would have been severely damaged, ammonia is otherwise removed by the liver effectively.
At the moment, i dont have any other ideas which would fit with these symptoms but if i do ill get back to you.
This is normal.
They do it before getting an imaging test just to check the kidneys.
When they get back to you let me know
Lets wait for the test results to come back in.
If it was anything serious they would have called you in right away, the fact that they have not means it is not life threatening.
Yes it probably means that it is nothing serious.
Lets see what the result is
That is good news.
A Simple MRI of the brain would rule out raised intracranial pressure but i dont believe you would have that either.
Not necessarily a spinal tap is done when we think it could be idiopathic intracranial hypertension which is another thing. raised intracranial pressure is something else.
That is the other name for idiopathic intracranial hypertension which is when a spinal tap is done. It is possible but it should cause headaches more often.
Yes but it can be considered if there are no other options.
Any metabolic issue should have shown up on the various tests that you have had done. Next best step is a clinical examination we are missing a piece of information, maybe there are some signs on the examination which can give us a clue as to how to proceed.
I have been offline anyway i saw the tests, the results clearly show that the stress test was completely normal. There is nothing untoward in the findings, what are you exactly concerned about in the test results because the changes are to be expected in the test and the strain pattern can occur in some patients and absence of actual LVH on the echo indicates that the findings are not significant.
As i said in my previous response, strain can indicate hypertrophy however the echo would have picked up on it quite easily. The echo was normal which means that there is NO hypertrophy and the strain was due to the result of the stress test which is to be expected.
Yes i believe we are 100% confident in you NOT losing consciousness
Metabolic causes should have shown up on the other tests, this is not any common metabolic problem. The only major symptom you have is lightheadedness and nothing else, this is why it is difficult to diagnose this problem. Hence a complete clinical examination (physical examination) may yield some clues.
I understand the feeling but we should have seen any clues if this was a blood related issue or a metabolic issue, in atleast some of the tests that you have had done so far.
No nothing metabolic, in order to get ketoacidosis you need to have diabetes, which you dont. So nothing of that sort at all.
There is no reason to believe that you will lose consciousness, there is no disease process in the brain or in your blood tests which would cause you to lose consciousness.
Get the clinical examination done and if that shows no clues, then consider starting a medication for anxiety. I understand that it is less likely to be the cause but at this point in time it would be worth it to try one for 2-4 weeks to see if the symptoms improve. It is worth considering it and treating it, JUST to see if your symptoms disappear or not. At the same time we can consider the other possibilities such as cervicogenic dizziness (which is due to dizziness caused by cervical spine issues)
But for now, based on these tests i can say that you should not lose consciousness because of any disease process related to the brain or metabolic causes. Passing out because of anxiety that is another thing.
Adrenal fatigue is not a medical conditions, it is something which is considered by naturopaths etc, but adrenal insufficiency is a medical diagnosis and it should be been diagnosed with the cortisol levels. The cortisol levels would have been low.
Unfortunately all of them went through all the ideas which we have already discussed and eliminated, even the head neurologist at our institute came up empty. the point he made was that there have to be some other symptoms in order for some rare syndrome to be diagnosed. Also he did say that we may be missing something which is why the clinical examination may need to be repeated.
Not really as we have gione through most of the possibilities here.
Yes im sure.
I dont see a reason for you to lose consciousness based on these tests.
yes that is true.
Sorry i was offline,
Well we dont know what is causing the lightheadedness at this point and we need more information.
Sorry i have been offline, been busy with a major conference so i might not reply as often the next few days.
The liver is possible but less likely as we have discussed it previously, the lab tests should have shown something. But you can get an ultrasound to confirm it is normal.
The urine contains breakdown products of the nutrients that you eat, it contains ammonia, urea and other waste products.
I am online now.
When is your appointment with a neurologist? You should have him evaluate you as soon as possible.
Yes, do you have any records where she documented her findings?
Her examination notes are not in here, did she say what type of encephalopathy she was thinking of? Because encephalopathy does not make any sense here.
The lists that you have sent me, none of them are applicable here because they would have been picked up on the tests that you have had done so far. I think since we are stuck at this point, i would recommend visiting the Mayo Clinic or Cleveland Clinic where they may be able to come up with something.
Diabetes and ketoacidosis would have shown up in the blood tests. Anemia again should have shown up in blood tests.
A repeat MRI would be worth it since it has been 3 years since your last one.
We had just one patient but he had different symptoms and we eventually reached diagnosis. That patient's symptoms were markedly different.
With these tests there is no reason for you to lose consciousness. If you can, get the MRI of the brain done, and ask your neurologist about the possibility of cervicogenic dizziness and ask her if she suspects that based on your examination.
With your previous cardiac tests, it is less likely that it is cardiac in nature. Slow internal bleeding is unlikely to be the cause here, because even if it was bleeding slowly the lab tests would have picked up on it.
Going to a better equipped ER is not teh answer, the mayo clinic or a large university hospital where they can investigate this issue thoroughly is a better option.
I believe i recommended University of washington medical center, Seattle previously as well.
Go for an internist first he can take a whole view of the situation and determine which other specialist would be most useful.
I believe we have gotten through all of the things which can cause this and eliminated them one by one.
Ruled out the following,
Inner ear issues
Hypertension caused by secondary issues like pheochromocytoma
Vertebral artery issues
No none of these fit in at all with your symptoms and would have shown up on your tests or you would have had various other symptoms.
One thing which is essentially a shot in the dark at this point, maybe we can consider heavy metal intoxication. While that would also not completely fit into this scenario, some heavy metals like lead, mercury, cadmium may cause lightheadedness when present in large amounts in the body. The internist in the university hospital may be able to help here in getting tested for that as well.
I dont think so, i didnt find them in our conversation. If you did let me know and we can take them off the list as well.
Wilsons is out as well because the ceruloplasmin and copper were normal.
And these tests did not include the heavy metals i was talking about earlier
And yes i do speak fluent english however i dont believe you will need to contact me because you are NOT likely to lose consciousness. Whatever this is it has not progressed to an extent where it can cause unconsciousness otherwise there should have been changes in some of your tests or your neurologist should have picked up on some abnormality.
Again that would be against the site policy, we cant be your primary physician, we can advise only. I can only work within the confines of the sites rules.
I can make you a summary of your case which you can keep with you if you want, ill work on the word document as soon as i find time and send it to you.
Which is why the University hospital is your best option, get a doctor onboard in that institute have him go through your entire case and take over full management.
Yes you can only contact me through here.
Ill try my best to get it done within a couple of days. But even if you dont have the summary just have your records transferred to UW which would be in much more detail.
Yes exactly, something should have been detected by now.
Please find attached the summary and an added services offer.
Best of luck.
You can make the changes where there is information missing (add it in parentheses)
I dont think you need a KP check at all, the heavy metal toxins are necessary along with a MRI of the brain. A full body MRI would be expensive and it may not reveal any new information but it can be done if there are no other viable options left.
There are two ways to do a MRA, one is to do via the method which you described and the other one ONLy looks at the arteries. But i still think a full brain MRI with all the images including T1, T2 and FLAIR sequences should be done.
KF sorry, that was a typo. Yes a cardiac issue would have been picked up and if you have PVCs then i think a repeat 7 day holter monitor would be useful here.
And yes you dont have diabetes.
If they have gotten worse then get a holter monitor done, if they are worsening then they can certainly explain your lightheadedness.
The heavy feeling can be due to anemia but we have already ruled that out so i think at this point in time we can concentrate on the heavy metal issue, the brain MRI and see where that leads us.
Do you have more details regarding this finding?
This could be anything, from a simple infarct to various demyelinating conditions, we need more details about the finding before anything can be said.
Once the full report comes in, we can know the exact size
No not necessarily, it may not cause any lesions in the brain.
Lets wait for the full report.
Yes hemolysis would appear on a CBC. A slightly high heart rate can also be due t0o stress and anxiety.How low was the IgA level?
Thanks, ***** ***** not low enough to cause any serious issues. Usually, when you have selective IgA deficiency or any other cause for the low IgA levels, the level is usually under 20 and your level is not significantly low. It can be this low at times and not cause any issues.
Lets wait for the full MRI report.
The full report which would tell me the exact size, appearance, location in the brain. Additionally it will tell how it showed up in T1, T2 and FLAIR images...it is a detailed report. HIV would have caused various changes in your blood work by now so i dont think that is the answer.
If you can that would be great, if they can have them email it to you.
Well this doesnt tell us much, it doesnt tell us the size, the appearance on various images. I think we would need for your doctor to review this and give us more information.
These are normal
Not likely to be metal but it is a lesion whose cause should be determined.
Well now that more information is available and that there is only a single lesion which is 1-2 mm in size and is visible ONLY a single cross-section, this means that it is likely to be an artifact. An artifact is a lesion which is actually NOT present in your brain and is rather the effect of the test itself. Artifacts can confuse radiologists at times and that is why your neurologist would be the best judge whether this lesion is significant or not. In my experience, a lesion which is visible ONLY on a single view is almost always an artifact and is NOT clinically significant. The artifact is created because of the way MRI is done and is not indicate any underlying brain lesion.
unfortunately that is correct
Heavy metal levels in your blood should be checked as we have ruled out essentially everything else. regarding the shape of the head, that is not anything which would cause these symptoms.
An MRA of the head rules out any problems with the arteries of the brain and an MRI of the brain rules out tumors, MS, ischemic lesions infections, compression of the brain, raised pressure in the brain, trauma, aneurysms, abnormal growths essentially most of the neurological causes.
Heavy metal poisoining would NOT be visible as metal in the MRI, it is actually in the form of microscopic particles accumulating in your body which can cause malfunctioning of the organs. They would not be visible in the MRI if that is what you were thinking about, they would be detected via a blood test to check for their levels in your system.
An EEG is likely to come back as normal.
It depends, but i would recommend a blood test
It can check for iodine levels as well.
Yes that is safe to take and we can consider the hair test if the blood one is hard to find.
Questdiagnostics is the one i would go for however if they dont do these tests then you can go for mylabsforlife as recommended by your doctor. The stool test for candida is not relevant here as candida is normally present in our bodies , it will rarely cause any symptoms. The mold one can be considered however
No they check both stool and saliva for various things.
Ill check quest diagnostics once again.
At this point in time you should get the heavy metal tests done.
CTe is a less likely possibility because it should also cause headaches, cognitive issues including memory issues. Lightheadedness alone makes this diagnosis less likely. encephalopathy should affect other cognitive functions as well which have not been affected in your case. Now that you have ordered the tests done, lets see what happens and what do they say. Another liver scan would not reveal anything new i think. We are essentially stuck at this point.
Muscle fasiculations are more of a problem with the spinal cord rather than the brain, they are an indication of a lower motor neuron lesion and usually in this situation the problem lies with the muscles themselves or the neurons arising from the spinal cord.
even if you get them all over they are not due to the brain but rather due to the spinal cord, muscles or nerves. Brain issues dont cause fasiculations.
In your case, it is likely to be benign fasiculation syndrome which is a problem more associated with the muscles themselves
Gluten is not an issue, secondly a doppler of the head wont be of much use as your MRA was normal and if there was a problem in obstruction of blood flow then it would have shown up on the MRA. Candida usually doesnt only cause lightheadedness but it is worth testing for. I think a holter monitor test may be done to determine if your PVCs are worse which may be responsible for the lightheadedness.
A holter monitor would look at your heart for a prolonged period of time and it would give us a better idea of the frequency and severity of the PVCs. An EKG just looks at a single point in time so i would recommend the holter and would actually recommend a 7 day holter.
If they come up with something i will let you know.
That is likely to be anxiety and stress over your lightheadedness and the absence of a diagnosis. Insomnia of this sort is common in situations like yours.
No this is not encephalopathy
Which is why you need to visit a university hospital like university of washington medical center.
Lets see if he has any new ideas
This test would not be as useful, i would suggest you wait for the appointment with your doctor. At this point in time a phone call would not help you significantly, i would wait for an evaluation from the internist first as i would like to hear his point of view.
Well i dont think this is candida and these tests are not really reliable, candida would always be found in your body and even in large quantities it would not cause symptoms unless the immune system was compromised. The only candida infections which actually cause issues are the systemic ones which are found in the bloodstream.
A leaky gut is a theory which is still contested among medical professionals, that is something which some doctors would subscribe to while most wont. It is more of a naturopath diagnosis than in traditional medicine
Candida causing issues related to the brain would have caused inflammation in the brain, secondly candida can be found ANYWHERE in the body but if it is present in the bloodstream that needs to be treated always. Candida on the skin and in your gut does not necessarily need treatment. The article you sent me is what naturopaths and alternative medicine doctors talk about, im not saying it is wrong but it is something which has not been proven scientifically in mainstream medicine. It may be what is causing your issue and you can certainly try this approach as no other tests etc have yielded answers.
CTE would not suddenly cause a coma, it would usually cause the other symptoms rather than a coma.
A coma is NOT a inherited disease, infact a coma is not a disease at all. It is a consequence of many neurological and other diseases. And CTE would not cause a coma.
Well again CTE is not know to cause comas in patients so there is no evidence of it causing a coma either. I dont see how you are susceptible to a coma as there are no signs which can cause this.
Well again CTE is not know to cause comas in patients so there is no evidence of it causing a coma either. I dont see how you are susceptible to a coma as there are no signs which can cause this.
Those are canker sores they can develop due to various causes and they are usually not an indication of anything severe.Normal healthy people can get them as well. And the biggest cause for them is anxiety or stress.
Also please open a new question as this one is so long and extensive that i am having troubling accessing it. I have trouble sending through replies as it is slowing down my access to the site.
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