Wrong diagnosis by neurologist?

ilankrayh

Hi All,

Not sure if this is the right place to address the following problems if it is not, my sincere apologies.

I hope that some of you might give me advice on what to do next or maybe have had a similar experience?

Recently my mom was diagnosed with Alzheimer's. 2 Months before this she was hospitalized with a minor heart attack. But after a day she started to have all kind of weird attacks and seizure like symptoms. She got some scans and the only thing they could find was some scar tissue from an car accident 50 years ago. After some more bloodwork it appeared she had severe hyponatremia (low sodium)

Luckily they managed to get it into control and she was released in a few days.

When she got home in the following weeks she got those attacks again, and I asked our GP to check her bloodwork for sodium levels. (the GP even did not want to do it at first because her bloodwork was fine 4 weeks ago?!?!?!) After much pressure from me the GP signed the form. And when the test came back her sodium was again below the minimum. So hyponatremia again.

She was taken to the local hospital and was seen by a neurologist who did some scans and said her symptoms had nothing to do with hyponatremia and her seizures were epileptic attacks from the car accident and she got prescribed levetiracetam (Keppra) to control the attacks.

In the following weeks her mental being got a lot worse. So I called the GP to mention she got a lot of side effects of taking this drug (as mentioned in the enclosed description). And our GP said it was not the drug but it must be dementia!

So she decided to take an MMSE test. And the result was Alzheimer (really is this possible to diagnose from just one test???) I said to her could her mental state not be affected by the medicine and shouldn't we do a test without those drugs? She did not think so and she send us to the neurologist again.

So back at the hospital the neurologist said it clearly was the scar tissue that did this and not the drug ! But I told her she did not have these symptoms before she got this medicine?

So after again much conviction from me (which the doctor clearly did not like she was the MD and not me.) we decided to stop with the drug for 2 weeks and see if the symptoms/side effects would go away. And luckily they all did!!!

In the following weeks she got one more attack (and again sodium way to low) So the GP decided it was best to give her an sodium rich diet. And the changes were dramatic (positive) in her behaviour! The only thing that remained were her problems with her short memory. (Which maybe still got something to do with the hyponatremia or even with her heart attack which I have read many times in both cases.)

After seeing the neurologist again to sort things out further she took an MRI and the only thing she could see was the old scar tissue again so her diagnosis now was also Alzheimer's? That the most severe problems had stopped after not taken Keppra anymore was of no issue to her.

But what about the 5 attacks which she had all with low sodium levels? Just a coincidence the hyponatremia had nothing to do with the attacks?!? I was really baffled at the time. How can this "doctor" just wave these significant details away? And come up with this diagnosis???

And to make things worse (at the time I did not know much about Alzheimer's) I said to here: If its Alzheimer's should you not see any black holes in the scan? I was snubbed at and was told that Alzheimer's clearly did not create any holes in the brain! How could I think that! And she strongly advised me that I should not self diagnose on the internet any more! And that was the end of it.

(my apologies for this long text by the way but I had to get this of my chest)

So here I am not sure on what steps to take on next. I think it is most ludicrous that the neurologist said Alzheimer's shows no holes in the brain which it clearly does if I read about it and see the pictures. How could she have said that???

I forget to mention we live in the Netherlands and clearly the "doctors" here are on another level than in the US.

So hopefully anybody out here have had similar problems or have some idea on what to do next?

Thanks for your time!

SusanB-dil

Hi ilankrayh - is a second opinion from a totally different medical network possible?  someone who will listen to your concerns?

Welcome to here... if needed...  but it sounds like diagnosis should be more definitive. and with a second opinion, if indeed the diagnosis remains the same, I think you would then have peace-of-mind about it, otherwise, could be ruled out. 

(but then keep eye on her as precaution just due to the conflicting diagnosis - in other words, all for a second opinion, but I wouldn't want anyone to go to a doc 'just to hear a better diagnosis').

M1

Welcome.  Just FYI I'm an internist; Severe hyponatremia can cause all kinds of neurologic problems, so it seems to me the first order of business is to insist that they find out why she is having recurrent hyponatremia:  this can be drug-related, tumor-related (pituitary or other including some lung cancers), or from drinking too much water (which is cerrtainly possible if someone has dementia, but it's not clear to me that she does).  An endocrinologist is typically the specialist who would sort this out, and I would insist on a consult as soon as possible.  Meanwhile I would look at every drug she is taking and look it up to see if low sodium is a side effect (it happens with a lot of SSRI antidepressants, for example).  Good luck---

DrinaJGB

My father battled hyponatremia for the final year or so of his life. I could always tell when he needed to be admitted because of his irrational behavior. In the end it was the thing that killed him one morning of  sudden cardiac arrest.

jfkoc

You are a wonderful advocate for your mother. Please do research Alzheimers diagnosis so you will have thay infor under your belt and please continue here and on the internet...You are a valued team member... your imput is valuable!

Marta

Ilankrayh:  Alzheimer’s does not cause holes in the brain. Mischien heb je de vertaaling niet verstaan.   Brain atrophy does not translate to ‘holes in the brain.’  It refers to shrinkage of the brain. Atrophy does not show up on MRI for all dementia patients. 

Dementia of any type is diagnosed by excluding all other causes, and by performing extensive neuropsychological testing (in most cases several hours of testing).

Ik hoop dat U nog een antwoord krijgt. Niet opgeven, hoor!

MN Chickadee

In the event it is seizures and Keppra is needed, that can take time for the body to adjust. My mother had to start it after developing seizures in Alzheimers. It took about two weeks for the unusual brain fog and lethargy to ease. But then she finally returned to her baseline. However it sounds like the first order of business is to figure out if it’s related to the sodium.

ilankrayh

Indeed I think that would be a good idea to try next, preferable from a different hospital.

ilankrayh

Thank you. The neurologist doesn't care at all about the hyponatremia. So dont want to deal with her ever again. It's back to the GP again and try to get an appointment with an endocrinologist as you said. Thank you for the recommendation. 

I already checked her medicine for side effects on sodium levels and could not find any.

ilankrayh

I'm sorry for your loss. I've read a lot on hyponatremia and it seems a lot of doctors dont know how to deal with this problem and is often neglected or unrecognised unfortunately.

ilankrayh

Thank you for your kinds words.

ilankrayh

SusanB-dil wrote:

Hi ilankrayh - is a second opinion from a totally different medical network possible?  someone who will listen to your concerns?

Welcome to here... if needed...  but it sounds like diagnosis should be more definitive. and with a second opinion, if indeed the diagnosis remains the same, I think you would then have peace-of-mind about it, otherwise, could be ruled out. 

(but then keep eye on her as precaution just due to the conflicting diagnosis - in other words, all for a second opinion, but I wouldn't want anyone to go to a doc 'just to hear a better diagnosis').

Indeed I think that would be a good idea to try next, preferable from a different hospital.

ilankrayh

M1 wrote:

Welcome.  Just FYI I'm an internist; Severe hyponatremia can cause all kinds of neurologic problems, so it seems to me the first order of business is to insist that they find out why she is having recurrent hyponatremia:  this can be drug-related, tumor-related (pituitary or other including some lung cancers), or from drinking too much water (which is cerrtainly possible if someone has dementia, but it's not clear to me that she does).  An endocrinologist is typically the specialist who would sort this out, and I would insist on a consult as soon as possible.  Meanwhile I would look at every drug she is taking and look it up to see if low sodium is a side effect (it happens with a lot of SSRI antidepressants, for example).  Good luck---

Thank you. The neurologist doesn't care at all about the hyponatremia. So dont want to deal with her ever again. It's back to the GP again and try to get an appointment with an endocrinologist as you said. Thank you for the recommendation. 

I already checked her medicine for side effects on sodium levels and could not find any.

ilankrayh

DrinaJGB wrote:

My father battled hyponatremia for the final year or so of his life. I could always tell when he needed to be admitted because of his irrational behavior. In the end it was the thing that killed him one morning of  sudden cardiac arrest.

I'm sorry for your loss. I've read a lot on hyponatremia and it seems a lot of doctors dont know how to deal with this problem and is often neglected or unrecognised unfortunately.

ilankrayh

jfkoc wrote:

You are a wonderful advocate for your mother. Please do research Alzheimers diagnosis so you will have thay infor under your belt and please continue here and on the internet...You are a valued team member... your imput is valuable!

Thank you for your kinds words.

Michael Ellenbogen

It sounds like you have bad doctor as you folks are very advance as compared to the US when it comes to dementia.