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YadaYadaYada

Ideal_Rock
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Feb 2, 2016
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5,944
Hey Everyone,

A Neurologist I saw recently told me she wants to order an EEG and I'm kind of up in the air about it.

I'll try to make this short, basically I've been having memory problems significant enough that I don't leave the house much because I have the tendency to get lost. Also I started falling recently, I'm relatively healthy 37 years old so no real reason I should be having these problems. I went to my primary care who ordered a bunch of blood work and I met with the neurologist in the meantime. She did a complete assessment on me and I passed her memory test with flying colors but she said she wanted to order a CTA and MRI because I had a stroke (blood clot that went to an artery in my eye) when I was pregnant. She also wanted to do a Lyme and B12 test.

Later that day my primary called and said my tests came back all normal and he would send me a letter with the results (which I haven't received yet). That same day neurologist calls and tells me my B12 is low and she wants me to take a supplement. Well it turns out s deficiency in B12 can cause memory problems as well as balance issues. So at this point I told her I wanted to hold off on the CTA and MRI to see if the B12 would resolve my problems.

I got a call yesterday that they want to do an EEG which monitors brain activity and is used to detect brain abnormalities. It's non invasive but I have a $200 deductible and 20% co insurance, so I'm struggling with whether I should give the B12 time to work and if this test is necessary it the deficiency and symptoms clear up from the supplement.

The neurologist also never mentioned wanting to do this test, it only came up after I asked to hold off to see if the B12 is the actual issue. To be clear, I don't mind spending the money on something that is necessary I just don't know that we are at that point yet. I did agree to the Lyme test

Thoughts?
 

kmarla

Brilliant_Rock
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Feb 8, 2013
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684
I'm sorry to hear about your health challenges. I also have a stroke history and low B12, for which I take supplements. Given that you're only 37 and having significant issues that are not normal, my advice to you is to start with B12 supplements per doctor's guidance, but follow through with the EEG and MRI. These can be done concurrently and I personally wouldn't want to delay, especially since the doctors aren't in agreement and are reading the B12 results differently. Given that your physician read your B12 results as normal, I'm thinking that they likely fall within the borderline range rather than extremely low. The EEG and MRI can give you valuable information. I wish you all the best and I'm sorry you're experiencing these symptoms.
 

sonnyjane

Ideal_Rock
Joined
Jul 13, 2008
Messages
2,471
Yikes. Get it done. Sounds much more serious than a B12 issue. Don't take chances with your brain.
 

ame

Super_Ideal_Rock
Joined
Jul 7, 2004
Messages
10,723
StephanieLynn|1458739370|4009785 said:
Hey Everyone,

A Neurologist I saw recently told me she wants to order an EEG and I'm kind of up in the air about it.

I'll try to make this short, basically I've been having memory problems significant enough that I don't leave the house much because I have the tendency to get lost. Also I started falling recently, I'm relatively healthy 37 years old so no real reason I should be having these problems. I went to my primary care who ordered a bunch of blood work and I met with the neurologist in the meantime. She did a complete assessment on me and I passed her memory test with flying colors but she said she wanted to order a CTA and MRI because I had a stroke (blood clot that went to an artery in my eye) when I was pregnant. She also wanted to do a Lyme and B12 test.

Later that day my primary called and said my tests came back all normal and he would send me a letter with the results (which I haven't received yet). That same day neurologist calls and tells me my B12 is low and she wants me to take a supplement. Well it turns out s deficiency in B12 can cause memory problems as well as balance issues. So at this point I told her I wanted to hold off on the CTA and MRI to see if the B12 would resolve my problems.

I got a call yesterday that they want to do an EEG which monitors brain activity and is used to detect brain abnormalities. It's non invasive but I have a $200 deductible and 20% co insurance, so I'm struggling with whether I should give the B12 time to work and if this test is necessary it the deficiency and symptoms clear up from the supplement.

The neurologist also never mentioned wanting to do this test, it only came up after I asked to hold off to see if the B12 is the actual issue. To be clear, I don't mind spending the money on something that is necessary I just don't know that we are at that point yet. I did agree to the Lyme test

Thoughts?
I don't think a B12 deficiency will cause problems that severe but you'd have to wait several weeks for the B12 to absorb to even know, and if it's not that, then you've wasted several weeks in finding an answer. I would get it done.

I've had several EEGs because I have a migraine/seizure issue that they cannot figure out. That's the only test that shows what's going on. CTs, MRIs, MRAs, everything comes back clean except an EEG (though I have not had a spinal tap because I flat out refuse due to how so many family members have reacted with serious infection in their spinal fluid.)

They are painless, but they are a PITA bec they stick these electrodes to your scalp and get goo in your hair.
 

AGBF

Super_Ideal_Rock
Premium
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Jan 26, 2003
Messages
21,119
I have had an EEG and an MRI of my brain stem (if I remember the tests correctly) and something else as well. All of these were done after my neurologist told me I had not had a stroke, just to rule out that I had had a stroke (about five years ago). I concur that you should go with your neurologist's advice, particularly since you have had one stroke. There is nothing wrong with an excess of caution, as long as the physician is not ordering a battery of costly tests without reason just to make money for himself. An EEG is routine and not costly.

Just my 2 cents. I wish you good luck and good health.

Hugs,
Deb :wavey:
 

House Cat

Ideal_Rock
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Feb 22, 2009
Messages
4,005
I would do the EEG. This is your brain we are talking about. This is serious business. Do you have pernicious anemia? If not, then I don't really see how B-12 will help you in a dramatic way.


If it were me, I would have had it done immediately.
 

TooPatient

Ideal_Rock
Premium
Joined
Sep 1, 2009
Messages
8,887
I would do the EEG. Talk to the neurologist about the MRI. You might at least schedule it (can sometimes be a wait). Make sure they do with contrast so you don't have to do again!

Regarding B12, it can do serious stuff. That is what took DH down so hard a few years ago. His was mostly physical issues. With the first sublingual pill, he started to feel slightly better almost immediately. Wore off quickly, but was noticeable. Each pill after also had that sort of noticeable reaction. Started lasting longer. Took months to get completely balanced out, but the good times got longer and longer.

So, all that to say -- Get the EEG.
I had one some years ago. It is as easy of a test as you can get and shows a lot of stuff.

Also, get the MRI at least scheduled. If the B12 isn't making noticeable difference within something like a month, then you need that MRI! (BTW, there is nothing saying you can't have a slight B12 deficiency AND some other issue -- hoping you don't, but just something to consider as you weigh your options.)


Good luck! Hope you and your doctor figure it out soon!
 

ame

Super_Ideal_Rock
Joined
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Messages
10,723
TooPatient|1458761131|4009978 said:
I would do the EEG. Talk to the neurologist about the MRI. You might at least schedule it (can sometimes be a wait). Make sure they do with contrast so you don't have to do again!

Regarding B12, it can do serious stuff. That is what took DH down so hard a few years ago. His was mostly physical issues. With the first sublingual pill, he started to feel slightly better almost immediately. Wore off quickly, but was noticeable. Each pill after also had that sort of noticeable reaction. Started lasting longer. Took months to get completely balanced out, but the good times got longer and longer.

So, all that to say -- Get the EEG.
I had one some years ago. It is as easy of a test as you can get and shows a lot of stuff.

Also, get the MRI at least scheduled. If the B12 isn't making noticeable difference within something like a month, then you need that MRI! (BTW, there is nothing saying you can't have a slight B12 deficiency AND some other issue -- hoping you don't, but just something to consider as you weigh your options.)


Good luck! Hope you and your doctor figure it out soon!
Definitely have them order a with and without contrast test. They'll do them first without it, and then repeat all the scans with the contrast. So you're in the tube for a while but they do the same tests twice, just with and without the dye. If nothing else you get a baseline.
 

House Cat

Ideal_Rock
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Feb 22, 2009
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4,005
Stephanie,

Are you getting B-12 injections?
 

ksinger

Ideal_Rock
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Jan 30, 2008
Messages
5,078
Diagnosing neurological problems is maddeningly difficult, and ruling stuff out can take a LOT of tests. And gallons (it seems) of blood work. I'm not an expert, but after a full C and T spine MRI, and 6 of them on my head, I have a pretty good idea of what and why.

If you agree to the MRI, you won't be able to pick and choose what the doctor orders, s/he's the doctor after all. But you can ask about it. I would ask if it will be on a 3T machine (more powerful, sees more, so the correct answer is yes), will it be with contrast (again, yes, otherwise if they find something they'll just have to do it AGAIN. I know this from personal experience.) and finally, ask what the doc is looking for, because that will determine the imaging protocol s/he orders, and you have a right to know if s/he has something in mind. If the first 2 of those questions doesn't get answered positively, walk away until they are. MRIs are too expensive, time consuming, and stressful to have to repeat just because the equipment is antiquated or the doctor is a dunce.

As for the B-12 deficiency, I've not known one person yet who was deficient - myself included - who could chalk their problems up to that deficiency. Yes B-12 deficiency can cause problems and needs to be checked, but it always seems to be something else in the end. (That one is just my opinion, and yes I'm still deficient, and no, that's not my problem)

And I would just go ahead and do the EEG. Easy, non-invasive, could be revealing, and not horribly expensive. Do it.
 

YadaYadaYada

Ideal_Rock
Premium
Joined
Feb 2, 2016
Messages
5,944
House Cat|1458766926|4010048 said:
Stephanie,

Are you getting B-12 injections?
Hi House Cat,

Not anemic that I'm aware of, I was actually surprised I came up deficient in B12. I'm just taking an oral supplement at this point but I was going to ask her to retest to make sure my levels come up and then if not I guess the injections are the next step.

They have to schedule these scans at my local hospital so I wouldn't have had a chance to do them already since my appointment was just on Thursday and they didn't call me back until Monday (even then she hadn't scheduled them yet).
 

TooPatient

Ideal_Rock
Premium
Joined
Sep 1, 2009
Messages
8,887
StephanieLynn|1458771314|4010089 said:
House Cat|1458766926|4010048 said:
Stephanie,

Are you getting B-12 injections?
Hi House Cat,

Not anemic that I'm aware of, I was actually surprised I came up deficient in B12. I'm just taking an oral supplement at this point but I was going to ask her to retest to make sure my levels come up and then if not I guess the injections are the next step.

They have to schedule these scans at my local hospital so I wouldn't have had a chance to do them already since my appointment was just on Thursday and they didn't call me back until Monday (even then she hadn't scheduled them yet).
Orally like swallow or like sublingual? Some can't absorb through stomach need sublingual or injection.
 

YadaYadaYada

Ideal_Rock
Premium
Joined
Feb 2, 2016
Messages
5,944
TooPatient|1458773336|4010098 said:
StephanieLynn|1458771314|4010089 said:
House Cat|1458766926|4010048 said:
Stephanie,

Are you getting B-12 injections?
Hi House Cat,

Not anemic that I'm aware of, I was actually surprised I came up deficient in B12. I'm just taking an oral supplement at this point but I was going to ask her to retest to make sure my levels come up and then if not I guess the injections are the next step.

They have to schedule these scans at my local hospital so I wouldn't have had a chance to do them already since my appointment was just on Thursday and they didn't call me back until Monday (even then she hadn't scheduled them yet).
Orally like swallow or like sublingual? Some can't absorb through stomach need sublingual or injection.
I'm just taking a B12 gel cap so not sublingual. No good? This is what the doctor recommended but I know nothing about supplements because I never take anything. She told me take 1000mg a day but I read in Japan they recommend 5000?!
 

TooPatient

Ideal_Rock
Premium
Joined
Sep 1, 2009
Messages
8,887
StephanieLynn|1458777992|4010118 said:
TooPatient|1458773336|4010098 said:
StephanieLynn|1458771314|4010089 said:
House Cat|1458766926|4010048 said:
Stephanie,

Are you getting B-12 injections?
Hi House Cat,

Not anemic that I'm aware of, I was actually surprised I came up deficient in B12. I'm just taking an oral supplement at this point but I was going to ask her to retest to make sure my levels come up and then if not I guess the injections are the next step.

They have to schedule these scans at my local hospital so I wouldn't have had a chance to do them already since my appointment was just on Thursday and they didn't call me back until Monday (even then she hadn't scheduled them yet).
Orally like swallow or like sublingual? Some can't absorb through stomach need sublingual or injection.
I'm just taking a B12 gel cap so not sublingual. No good? This is what the doctor recommended but I know nothing about supplements because I never take anything. She told me take 1000mg a day but I read in Japan they recommend 5000?!
Get sublingual. Not everyone absorbs B12 through stomach. Under tongue goes straight to bloodstream. Works for most people who need. DH,can't absorb so this is what he does. He takes 3 1000mg pills per day to stay in "normal" range.
 

momhappy

Ideal_Rock
Joined
Mar 3, 2013
Messages
4,660
I'm sorry to hear about your health problems.
My thoughts are that if it is something that is affecting your daily functioning (and you mentioned that you don't leave the house much due to memory problems) then I would have the EEG.
 

lambskin

Ideal_Rock
Premium
Joined
Aug 22, 2012
Messages
2,274
sonnyjane|1458745776|4009827 said:
Yikes. Get it done. Sounds much more serious than a B12 issue. Don't take chances with your brain.
Get the tests and see what they say. It is good to have a baseline test-even if normal.
 

YadaYadaYada

Ideal_Rock
Premium
Joined
Feb 2, 2016
Messages
5,944
Thank you to everyone who responded. I called this morning and setup the EEG for next Thursday. I have to call and talk to the insurance company about the other tests to get preauthorized and find out if they have preferred providers. The woman at the office I spoke to told me I may be better off to go to an imaging office rather than a hospital since I will have out of pocket costs and she gave me the codes so I can get the rates.

I will update when I have some results, I'm kind of conflicted on them wanting to find something, at least it would explain these symptoms but then nobody wants to have something wrong with them. That's also why I needed some reassurance I guess so thank you all for that.
 

TooPatient

Ideal_Rock
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Joined
Sep 1, 2009
Messages
8,887
StephanieLynn|1458830567|4010356 said:
Thank you to everyone who responded. I called this morning and setup the EEG for next Thursday. I have to call and talk to the insurance company about the other tests to get preauthorized and find out if they have preferred providers. The woman at the office I spoke to told me I may be better off to go to an imaging office rather than a hospital since I will have out of pocket costs and she gave me the codes so I can get the rates.

I will update when I have some results, I'm kind of conflicted on them wanting to find something, at least it would explain these symptoms but then nobody wants to have something wrong with them. That's also why I needed some reassurance I guess so thank you all for that.
Glad you got it set up!

Yes, for sure call around for rates. The hospital that did DH's MRI charged WAY more than the imaging center.

Did you get the sublinguals? I talked with DH last night. He said it sounds like more than just B12, but definitely worth getting the sublinguals going to see if it helps.

I hope they are able to find something clearly wrong that is simple and easy to fix so that you can feel all better soon :))
 

YadaYadaYada

Ideal_Rock
Premium
Joined
Feb 2, 2016
Messages
5,944
TooPatient|1458830938|4010360 said:
StephanieLynn|1458830567|4010356 said:
Thank you to everyone who responded. I called this morning and setup the EEG for next Thursday. I have to call and talk to the insurance company about the other tests to get preauthorized and find out if they have preferred providers. The woman at the office I spoke to told me I may be better off to go to an imaging office rather than a hospital since I will have out of pocket costs and she gave me the codes so I can get the rates.

I will update when I have some results, I'm kind of conflicted on them wanting to find something, at least it would explain these symptoms but then nobody wants to have something wrong with them. That's also why I needed some reassurance I guess so thank you all for that.
Glad you got it set up!

Yes, for sure call around for rates. The hospital that did DH's MRI charged WAY more than the imaging center.

Did you get the sublinguals? I talked with DH last night. He said it sounds like more than just B12, but definitely worth getting the sublinguals going to see if it helps.

I hope they are able to find something clearly wrong that is simple and easy to fix so that you can feel all better soon :))
Thanks TooPatient, I haven't gotten the sublinguals yet, is this something I can get at the pharmacy or do I need a health food store of vitamin store? I'm really clueless with vitamins.
 

december-fire

Ideal_Rock
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Messages
2,346
StephanieLynn,

I'm so glad you're going ahead with the test.

I know its common for people to avoid medical tests because they don't want to have a health issue.

But tests don't cause a health issue.

And, tests or no tests, the symptoms indicate a health issue.

The test results will do one of two things:
1. rule out some causes; in which case further tests would likely be required, or
2. identify the cause, which will allow you to determine next steps.

I hope that the test identifies a treatable cause, so that you can begin the process of dealing with the cause and return to your former activities.

Fear of the unknown is usually greater than dealing with what's really going on.

Keeping you in my thoughts and wishing you well.

Hugs
 

TooPatient

Ideal_Rock
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StephanieLynn|1458831412|4010364 said:
TooPatient|1458830938|4010360 said:
StephanieLynn|1458830567|4010356 said:
Thank you to everyone who responded. I called this morning and setup the EEG for next Thursday. I have to call and talk to the insurance company about the other tests to get preauthorized and find out if they have preferred providers. The woman at the office I spoke to told me I may be better off to go to an imaging office rather than a hospital since I will have out of pocket costs and she gave me the codes so I can get the rates.

I will update when I have some results, I'm kind of conflicted on them wanting to find something, at least it would explain these symptoms but then nobody wants to have something wrong with them. That's also why I needed some reassurance I guess so thank you all for that.
Glad you got it set up!

Yes, for sure call around for rates. The hospital that did DH's MRI charged WAY more than the imaging center.

Did you get the sublinguals? I talked with DH last night. He said it sounds like more than just B12, but definitely worth getting the sublinguals going to see if it helps.

I hope they are able to find something clearly wrong that is simple and easy to fix so that you can feel all better soon :))
Thanks TooPatient, I haven't gotten the sublinguals yet, is this something I can get at the pharmacy or do I need a health food store of vitamin store? I'm really clueless with vitamins.
Pretty much anywhere. We get DH's at RiteAid. Can also find at Whole Foods and other places. He didn't like the ones at Safeway as well, but they have them too.
 

YadaYadaYada

Ideal_Rock
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Joined
Feb 2, 2016
Messages
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Quick update:

My EEG results are normal. Lyme test is also negative. I changed my B12 supplement from Cyanocobalamin which is a synthetic form bound to a cyanide molecule to Methylcobalamin which doesn't have the same composition and is easier for the body to utilize. I was supposed to meet with the neurologist on Thursday but she was out that day. That's all I have so far!
 

ame

Super_Ideal_Rock
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Excellent news. It was worth the money to have that result.


Sent from my iPhone using Tapatalk
 

missy

Super_Ideal_Rock
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Jun 8, 2008
Messages
34,014
Glad the EEG is normal Stephanie! I am sorry they still don't know what is going on however but it is good news the EEG didn't show an issue. :appl:

From my understanding (and I could be wrong) Lyme testing can show false negatives so maybe at some point if they still cannot figure it out repeat the Lyme test?

Good luck with the neurologist and sending more good thoughts and dust your way!
 

CJ2008

Ideal_Rock
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Joined
Dec 31, 2006
Messages
4,750
I am so glad to hear you set up the EEG and that it came back negative!

Keep us posted - the falling and not being able to leave the house sounds terrible :( hope it resolves soon.

(this thread also reminded me about picking up sublingual B12!) So thank you.
 
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