All test clear so how can a Neurologist say I am Epilepsy

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
6
Reaction score
0
Points
0
Hi thanks for helping as I am bewildered. here is my story need opipions

1: 30th of May went to Dentist

2: 4 days later 3rd of June ended up in hospital due to suspected seizure. (June Bank holiday weekend)

3: 20th of October went to Dentist

4: 4 days later 24th of October ended up in hospital due to suspected seizure. (October bank holiday weekend)

5: Each time I was in hospital my phosphate levels were below the minimum of 0.8mmol/l.

6: An EEG was done, came back normal.

7: A CT scan was done, came back normal.

8: An Mri was done came back with the normal Multiple Sclerosis lesions for someone with MS for over 25 years but nothing to say that there was any extra problems with my brain.

9: The doctor in the hospital put me on 500mg Phosphate supplements daily.
(This is what can occur when the phosphate level in blood becomes very low. Muscle weakness develops, followed by Stupor, Coma, and Death).

10: Got Phosphate levels checked last week and levels were only 1.1mmol/L (Max is 1.4 mmol/L- min 0.8mmol/L). I asked the question what would my Phosphate levels be if I WAS NOT taking the phosphate Supplements? Would it drop back down by the 0.3mmol/l & I am back in the danger zone


11: The Neurologist is saying that it is Epilepsy, without any medical proof. What he is basing his findings on is an eye witness account only.

I have added some information about Phosphate and the need for Vitamin D for the body to adsorb Phosphate and guess what, when you have Multiple Sclerosis ones Vitamin D levels are very low.



thanks for your help all I want to know is if everything came back clear why has this doctor stuck his head in the sand. if he had shown me an EEG reading and it looked like there was a 7.3 magnitude earthquake on the Richter scale I would have said fair enough. If the Mri had come back and my brain looked like a bowl of porridge, I would have said, shite I knew this day was coming but I was hoping for a few more years, but all the results came back normal. Thanks for yere thoughts as I am at my withes end over it


Cheers
 
Irish Eyes

Welcome to CWE, just because your EEG came back normal does not mean you do not have epilepsy, if you take 20 people of the street and do an EEG on each they will not all be normal. Having an eye witness account of what happened is very helpful to him and this would play a big part in his diagnosis.
 
But why would he not send me off to see if I was allergic to the dentist aesthetic or send me off to check my phosphate levels checked or why was it dropping so freely. NO he just said you are Epileptic
 
Hey Irish Eyes, welcome!

Some people who definitely have epilepsy have never produced an abnormal EEG. A positive EEG can help rule in an epilepsy diagnosis, but a negative one can't rule it out. In other words, the clinical symptoms -- what was observed when you had your episodes -- can count for more in determining the diagnosis, especially if the symptoms are very clear.

That said, there are MS symptoms (such as drop attacks and spasms) that can resemble epileptic seizures. Has the doctor definitely ruled out that possibility? See https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Seizures

Since your episodes occurred at the dentist, is there a particular trigger that you suspect may be at fault? Sometimes neurological symptoms (whether related to MS or epilepsy or something else entirely) can be caused by a reaction to medications or anesthetics such as lidocaine or nitrous oxide.
 
Hi Nakamova thank you for your reply. My wife & I after doing some research think that the anesthetic caused my phosphate levels to start dropping that after 4 days it was below the 0.8mmol/L danger level which can cause seizures as once I got a glass of phosphate in the hospital went home and every thing was great until I went to the dentist again 4 months later and again 4 days after being at the dentist I ended up back in the hospital and again my phosphate levels were 0.6 mmol/L and any thing below 0.8mmol/L is in the danger zone and one needs vitamin D to adsorb phosphate and guess what a person who has MS does not have Vitamin D but did the neurologist send me for test on why the phosphate levels were dropping into the danger zone or get me checked to see if my trigger was the anaesthetics. Nakamova all I wanted was to find out what was wrong but after the EEG, CT and MRI came back as normal I was waiting for the Neurologist to say right we will check what is causing your Phosphate problem and get you checked for any allergy you might have to this & that but NO straight to you have epilepsy with out any proof . Nakamova I have MS for 25 years it is not like I am new to health problems but this just does not sit well with me as I am the kind of person that will say if it waddle like a Duck & quacks like a Duck then it is a Duck but this does not add up in my book. P.s I am on 200mg of Phosphate a day since I was in the hospital the last time and if the neurologist does not think it has anything to do with my phosphate why am I taking it ??? this is why I can not get my head around it. cheers
 
There are good doctors and not-so-good doctors out there, and you may have ended up with one of the latter. Whatever you can do to get some answers, do it. If nothing else, your doc should make sure you understand the reasoning behind his diagnosis and why he has ruled out other possibilities. Insist on second or third opinions, and enlist your other doctors and your wife as co-advocates. Be a squeaky wheel.

The dentist appointment seems the obvious place to start. What meds were you given? When had you last eaten before the appointment?

You might also confirm the phosphate levels taken. References suggest that 0.6mmol/L = moderate depletion -- enough to cause some symptoms, but not seizures, which wouldn't ordinarily kick in until your levels were at 0.3mmol/L. This doesn't rule low phosphate out as a cause; it may have played a contributing role along with an underlying or co-occurring condition. For example, hyperventilation or extreme stress can affect CO2 levels, in turn causing an electrolyte disturbance such as acutely low phosphate levels.
 
Hi Irish Eyes,

Welcome to the forum! Just like you I had seizures but my testing came back normal and after having a e.e.g. where the put the electrodes directly on my brain is when they found the damage on the right temporal lobe. The problem was the damage was to deep in my brain for any tests to show until they did this test and a wada test. You may want to ask your neuro to refer you to an Epileptoloist I've gotten the best help from an Epileptologist because they know a lot more about epilepsy than some neuros I've seen over the past 46 yrs.
I also know the MS can sometimes lead to seizures because I have a Aunt who had it and her neuro put her on tegretol to help stop seizures. Be sure to get a CBC (complete blood count) done to find all the details of what's going on. I wish you the best of luck and May God Bless You!

Sue
 
Last edited:
Hi Porkette thank so much for your reply. The first thing is I did not have a seizure as I was a sleep both times I woke my wife making noises which could be cramps from the MS .I went to bed as normal and woke up as normal and all test have come back normal so again if every think come back normal then it has to be normal unless you are a Neurologist.
 
Hi Irish Eyes and welcome!

I completely agree with Nakamova about getting 2nd and 3rd opinions, as well as being "the sqeaky wheel". It has taken over 7 years and multiple specialists for my diagnoses to even besomewhat sorted out. My situation is not common but still, had I not persisted in seeking answers, I'd hate to think what my medical status would currently be.
 
I'm skeptical here about the diagnosis of epilepsy. It seems like coincidence to me. It seems like there is some sort of reaction with the anesthetic and the phosphate level.

I am curious to know if the neurologist was provided enough medical history to know of the phosphate levels before and after each incident at the dentists office. If this was not the case, then you would be more likely to be diagnosed with epilepsy. Also, a neurologist typically does not actually witness the seizure or seizures when diagnosing epilepsy. Lastly, you had two episodes thus a diagnosis of epilepsy.

I don't think you have epilepsy. I don't even think it's worth getting 2nd or 3rd opinions, because this happened at a dentists office under anesthetic (probably the same anesthetic each time) and you know that each time your phosphate levels were low which caused you to go into shock. It's possible you had seizures, but they were not epileptic seizures.
 
Hi Reasebiunne the neurologist has being my neurologist for more that 10 years & has all my records. The Neurologist just brushed off the Dentist anesthetic and phosphate levels as a problem and when asked that all the EEG, CT & MRI were normal that should we start looking into the Dentist anesthetic and phosphate again a straight NO. Again to me it is like he is afraid to look into the Dentist anesthetic in case he is opening a can or worms so much easier to say ah it is epilepsy to which I got up and said I disagree with his as he has not proven to me it can only be epilepsy. Can I just say I am not here trying to deny I have or have not epilepsy. When I was told I had MS the result of the test could be shown to me but now nothing can be shown to me to say this is the scared on your brain from epilepsy and here are the ones from MS. If he did I would not be here asking I asked I would be trying to find out the best foods to eat or best way not to get another attack but it just does not sit with me Cheers
 
Hi all, (1) first off I would like to apologise for not coming back sooner but fighting the medical fraternity takes up a lot of ones time. (2) After a very very long time I have received a reply from the pharmaceutical company that made the aesthetic that I was giving and it stated that there is a possibility that the aesthetic could be the cause. Now as we all know these pharmaceutical company's they will never give a black & white answer. The reply was given to the doctor and I am still waiting for his reply but going from no way can the aesthetic cause your problems to the pharmaceutical company saying yes there is a chance it did. I will keep ye up dated but from waiting months for a reply do not hold ye breath for a quick answer. But again thank ye all for the support, help and guidance I was given since I joined the site.
 
Hi Irish Eyes,

I can relate to meds triggering seizures for me. I just had surgery done on both of my ears and my Dr. put me on a antibiotic and then I had seizures for the next 5 days I checked it out and I found out it was the antibiotic that could cause seizures. I wish you the best of luck and May God Bless You!

Sue
 
I'm almost positive steroids are a trigger for me.

I was having problems with my back a few years ago and I had been getting steroid shots in it twice a week for about two months. During this time I was having seizures left and right. When I stopped getting the shots my seizures went back to normal, about 5 a month.

Another time I had poison ivy on both arms, hands, legs and a few other places on my body. It was so bad I was scratching blisters into my skin. When I went to a dermatologist he told me that I could either use some type of cream that would take a few weeks before the poison ivy to go away. If I took steroid pills it would be gone in a few days. I decided on the pills, I did have 2 seizures during that time, but it was worth it not having to scratch the skin off my body for 2 weeks.
 
Back
Top Bottom