Aa
Neurological or Autoimmune? Something strange going on related to nerves and blood sugar(?!)
Hello you,
I am a young woman (23),normalweight (106 lbs),non-diabetic and I have this (most intercurrent and again disappearing symptoms) for a few years now.
I remember when it all started very suddenly with panic attacks which felt like being shaky,nauseous and hypoglycemic and a strong need for something to eat immediately, but it turned out that my blood sugar level is always okey in these situations,also my blood pressure except for the fast pulse rate,but after all, eating something makes it better.
There are times when I often have these kind of panic attacks and always something to eat with me,but there are also longer times when almost nothing happens to me.
Then I have this fits which are definitively the worst symptoms I have.
I have them approximately three to seven times a year.
They could last from a half day to two or almost three and it comes very suddenly and without any reason to me.
I begin to feel very nauseous,like my stomach wants to be pulled out itself but I can`t vomit.Instead of that I have also a very fast heart beat,sometimes also a mild heightened blood pressure,a feeling of extreme weakness,kind of delirium-like symptoms in my head (films,bizarre thoughts in head,altered consciousness)and the feeling of almost dying,almost seeing black in front of the eyes.
I then have to eat many dextrose cubes immediately,which make the symptoms all a bit better and when the nausea is also a bit better I start to eat like a machine and all day long.If I dont eat that amounts of food I feel very bad and with the time it slowly gets better due to the eating attacks.
Then after some time the fit is over. (lasting between 12 hours and 2,3 days)
But I often have some mild mental confusions and changes left when a fit is gone by...
Surprisingly I don`t really gain weight with this problems,my weight is very stable and doesn`t change much.
I also have:
-troubles concentrating since I was a child (chronic) and very mild autism-like behaviour periods (being obsessed with a special interest withouth knowing the reason why and living bit in my "own world" )
-hyperactivity (chronic)
-insomnia
-bipolar symptoms
-fast occuring and resolving paranoid and obscure thoughts,occuring more often sometimes
-"films" in my head (head or pseudo halluzination)
-lightheadedness
-kind of short absences, I think
-irritability
-short periods of confusion
-bad migraines lasting for one or two days and then disappearing quickly
-panic attacks,anxiety
-being very quiet
-personality changes
Yes I know the mental list is quite long and it is also very difficult for psychiatrists to diagnose me,they are making diagnosis for schizoaffective disorder at the moment...
Then some other physical issues which are not so extreme than the described fits:
-obstipation
-sometimes chronic pelvic bone pains, lasting for some days or weeks and then resolving again
-sometimes muscle twitches in eyes and arms,also fast occuring and resolving again very often, for days or weeks
-mild muscle weakness
Some months ago I also thought that it was the beginning o liver cirrhosis or something like that (I don`t drink) because I always had this slight pressure pain by my liver and spleen ,obstipation,nausea feelings and the often occuring eye twitches for almost a month...
Examinations I did:
-full bloodworks
-blood glucose testings
-thyroid testings
-liver enzyme values
-kidney tests
-rheuma and autoimmune
-some infection checks
-ultrasounds,x-ray
-EKG
-MRT
-psychiatric evaluations
......
They have found nothing abnormal.
Luckily I am quite healthy at the moment :), but my last fit was three weeks ago.
Has anyone similar symptoms or an idea what it could be?
Nice greets :)
sweetwoman
I am a young woman (23),normalweight (106 lbs),non-diabetic and I have this (most intercurrent and again disappearing symptoms) for a few years now.
I remember when it all started very suddenly with panic attacks which felt like being shaky,nauseous and hypoglycemic and a strong need for something to eat immediately, but it turned out that my blood sugar level is always okey in these situations,also my blood pressure except for the fast pulse rate,but after all, eating something makes it better.
There are times when I often have these kind of panic attacks and always something to eat with me,but there are also longer times when almost nothing happens to me.
Then I have this fits which are definitively the worst symptoms I have.
I have them approximately three to seven times a year.
They could last from a half day to two or almost three and it comes very suddenly and without any reason to me.
I begin to feel very nauseous,like my stomach wants to be pulled out itself but I can`t vomit.Instead of that I have also a very fast heart beat,sometimes also a mild heightened blood pressure,a feeling of extreme weakness,kind of delirium-like symptoms in my head (films,bizarre thoughts in head,altered consciousness)and the feeling of almost dying,almost seeing black in front of the eyes.
I then have to eat many dextrose cubes immediately,which make the symptoms all a bit better and when the nausea is also a bit better I start to eat like a machine and all day long.If I dont eat that amounts of food I feel very bad and with the time it slowly gets better due to the eating attacks.
Then after some time the fit is over. (lasting between 12 hours and 2,3 days)
But I often have some mild mental confusions and changes left when a fit is gone by...
Surprisingly I don`t really gain weight with this problems,my weight is very stable and doesn`t change much.
I also have:
-troubles concentrating since I was a child (chronic) and very mild autism-like behaviour periods (being obsessed with a special interest withouth knowing the reason why and living bit in my "own world" )
-hyperactivity (chronic)
-insomnia
-bipolar symptoms
-fast occuring and resolving paranoid and obscure thoughts,occuring more often sometimes
-"films" in my head (head or pseudo halluzination)
-lightheadedness
-kind of short absences, I think
-irritability
-short periods of confusion
-bad migraines lasting for one or two days and then disappearing quickly
-panic attacks,anxiety
-being very quiet
-personality changes
Yes I know the mental list is quite long and it is also very difficult for psychiatrists to diagnose me,they are making diagnosis for schizoaffective disorder at the moment...
Then some other physical issues which are not so extreme than the described fits:
-obstipation
-sometimes chronic pelvic bone pains, lasting for some days or weeks and then resolving again
-sometimes muscle twitches in eyes and arms,also fast occuring and resolving again very often, for days or weeks
-mild muscle weakness
Some months ago I also thought that it was the beginning o liver cirrhosis or something like that (I don`t drink) because I always had this slight pressure pain by my liver and spleen ,obstipation,nausea feelings and the often occuring eye twitches for almost a month...
Examinations I did:
-full bloodworks
-blood glucose testings
-thyroid testings
-liver enzyme values
-kidney tests
-rheuma and autoimmune
-some infection checks
-ultrasounds,x-ray
-EKG
-MRT
-psychiatric evaluations
......
They have found nothing abnormal.
Luckily I am quite healthy at the moment :), but my last fit was three weeks ago.
Has anyone similar symptoms or an idea what it could be?
Nice greets :)
sweetwoman
Hello silkcut
Yes I have a cousin who seems to have mental problems also, but I don`t know more about it because we don`t have so much contact.
She had kind of Asperger like behaviour in childhood (talking almost nothing,living in her own world,difficulty which showing emotions) ,I remember...
But for some time I heard that she behaves crazy, I think like hypomania or something similar (which I also know from myself...)
And at the same side of the family there is a case of type 2 diabetes in one grandparent,the father has gout for some years (but that has to do also with his eating habits) and one oncle had liver problems for a longer while (a non-virus hepatitis and high levels) caused by chemicals he worked with at his workplace.
On the other side of the family I have a history of some cases of bowel cancer ,one grandparent ,a great-grand parent and one more far away relatives.
But these problems have all been ruled out in my case and nobody in the family shares my symptoms in common.
When I feel sick my family sometimes just say that I maybe just don`t endure doing all the things others do,that there is something my body doesn`t like or even that it would be all just imagination!!!
That makes me a bit angry when they say the last point,but they don`t have so much knowledge about medicine also,so I can`t be angry of them for longer.
When I have a fit they sometimes say that on the one hand I maybe should see a doctor,but then tell me in the same time that it is just nerves....
When I tell them about the relation to eating ,they say I should just eat when I feel like eating in such a situation and that nothing can happen to me.
But I think if I wouldn`t eat when I have the fits,I don`t want to imagine what will happen to me next.
But the fits come from time to time and are luckily not always ,so my family see me quite healthy most of the time.
They worry more about some of my chronically mental issues and think that I will have big problems to get my life under controll or have a stable future.( a topic which I worry myself too, sometimes)
But they also know that there was something wrong with my brain since I am a child ( I had hyperactivity,difficulties concentrating,strange thoughts or behaviour,manic behaviour,anxieties,nervousness,insomnia,... since childhood and without any experienced traumatic incident), but was never medicated for ADHD or something else that was because I was a quite good pupil in school and not aggressive,I think.
Ohhh that was quite a lot text I have written,sorry for posting so long,I am a bit into mania at the moment. :)
And I think that I will repeat the ANA testings once or twice a year,just for sure. :)
yours
sweetwoman :)
Yes I have a cousin who seems to have mental problems also, but I don`t know more about it because we don`t have so much contact.
She had kind of Asperger like behaviour in childhood (talking almost nothing,living in her own world,difficulty which showing emotions) ,I remember...
But for some time I heard that she behaves crazy, I think like hypomania or something similar (which I also know from myself...)
And at the same side of the family there is a case of type 2 diabetes in one grandparent,the father has gout for some years (but that has to do also with his eating habits) and one oncle had liver problems for a longer while (a non-virus hepatitis and high levels) caused by chemicals he worked with at his workplace.
On the other side of the family I have a history of some cases of bowel cancer ,one grandparent ,a great-grand parent and one more far away relatives.
But these problems have all been ruled out in my case and nobody in the family shares my symptoms in common.
When I feel sick my family sometimes just say that I maybe just don`t endure doing all the things others do,that there is something my body doesn`t like or even that it would be all just imagination!!!
That makes me a bit angry when they say the last point,but they don`t have so much knowledge about medicine also,so I can`t be angry of them for longer.
When I have a fit they sometimes say that on the one hand I maybe should see a doctor,but then tell me in the same time that it is just nerves....
When I tell them about the relation to eating ,they say I should just eat when I feel like eating in such a situation and that nothing can happen to me.
But I think if I wouldn`t eat when I have the fits,I don`t want to imagine what will happen to me next.
But the fits come from time to time and are luckily not always ,so my family see me quite healthy most of the time.
They worry more about some of my chronically mental issues and think that I will have big problems to get my life under controll or have a stable future.( a topic which I worry myself too, sometimes)
But they also know that there was something wrong with my brain since I am a child ( I had hyperactivity,difficulties concentrating,strange thoughts or behaviour,manic behaviour,anxieties,nervousness,insomnia,... since childhood and without any experienced traumatic incident), but was never medicated for ADHD or something else that was because I was a quite good pupil in school and not aggressive,I think.
Ohhh that was quite a lot text I have written,sorry for posting so long,I am a bit into mania at the moment. :)
And I think that I will repeat the ANA testings once or twice a year,just for sure. :)
yours
sweetwoman :)
Hi sweetwoman
From my second-hand experience (with a family member), I believe ANA tests are mostly reliable. But repeat testing is sometimes advised just to be sure.
Here's some good information on ANA:
http://www.labtestsonline.org.uk/understanding/analytes/ana/test.html
Urticaria, from my experience with my kids, often points to a whole system issue. But you have it only in patches, which could well mean that your arms are in direct contact with an irritant.
I was wondering, what do your family think of all your symptoms? Do you have family members with similar problems?
hugs
sammxx
From my second-hand experience (with a family member), I believe ANA tests are mostly reliable. But repeat testing is sometimes advised just to be sure.
Here's some good information on ANA:
http://www.labtestsonline.org.uk/understanding/analytes/ana/test.html
Urticaria, from my experience with my kids, often points to a whole system issue. But you have it only in patches, which could well mean that your arms are in direct contact with an irritant.
I was wondering, what do your family think of all your symptoms? Do you have family members with similar problems?
hugs
sammxx
...ohh I have overseen something...
My ANA was okey,the doc said there would be nothing autoimmune going on in my body but I have heard that tests can be negative and there could be an autoimmune disease going on although.
My ANA was okey,the doc said there would be nothing autoimmune going on in my body but I have heard that tests can be negative and there could be an autoimmune disease going on although.
Hello Theresa
Thanks for your suggestions,do you think about a special neuro disease in my case because LP should be the next.
I will ask my neuro doc soon...
!!!! And I wanted to correct something about my weight:
I live in Continental Europe and our weight system is in kilogramms and I thought that exactly 1 kilogramm are 2 lbs.
So I have 52 KG (115 LBS) and not 106 (would be underweight)
I have seen it on purpose that my weight is 115 lbs in American,not 106. !!!!
Another question:
Do you know some condition which could have a relation to neuro problems plus urticaria like bumps on dorsal hands and arms?
Because my neuro asked about this contact allergy ( I think), also something undiagnosed,but he didn`t say anything else.
Think it could be related to autoimmune,because I have it especially on sunny days,but it goes away soon....
The idea with the symptom tracking is also very good.
Thanks for your advices :)
Thanks for your suggestions,do you think about a special neuro disease in my case because LP should be the next.
I will ask my neuro doc soon...
!!!! And I wanted to correct something about my weight:
I live in Continental Europe and our weight system is in kilogramms and I thought that exactly 1 kilogramm are 2 lbs.
So I have 52 KG (115 LBS) and not 106 (would be underweight)
I have seen it on purpose that my weight is 115 lbs in American,not 106. !!!!
Another question:
Do you know some condition which could have a relation to neuro problems plus urticaria like bumps on dorsal hands and arms?
Because my neuro asked about this contact allergy ( I think), also something undiagnosed,but he didn`t say anything else.
Think it could be related to autoimmune,because I have it especially on sunny days,but it goes away soon....
The idea with the symptom tracking is also very good.
Thanks for your advices :)
A lumbar puncture (also called a spinal tap) is a procedure to collect and look at the fluid (cerebrospinal fluid, or CSF) surrounding the brain and spinal cord.
It is not a pleasant procedure but mandatory in properly diagnosing neurological disease....
It can be done in a neuros office or at a hospital.The doctor numbs an area of your lower back/spinal area. Then they insert a long needle directly into the spinal cord. They needle is open on the end and they collect the spinal fluid that drops out....
I had mine done at the hospital under floroscope.Which I highly suggest.
They use a powerful x-ray machine called a floroscope and find the proper place to insert the needle. Sometimes if done by the naked eye it can take a few times to get the needle in the proper place.
I feel that an LP would be your next step.....It can definatly rule out alot.The LP results will point your doctor in the right direction....
I assume that that your ANA was normal...?????
I would suggest that you start a symptom diary. Write down anything that seems odd even if it is minor.Write down what you were doing,what you ate and anything that preceeds one of your "fits" as you call it...How long it lasts..Just anything and everything.Take it with you to your doctors appointments.....
I hope this helps.....
Theresa
It is not a pleasant procedure but mandatory in properly diagnosing neurological disease....
It can be done in a neuros office or at a hospital.The doctor numbs an area of your lower back/spinal area. Then they insert a long needle directly into the spinal cord. They needle is open on the end and they collect the spinal fluid that drops out....
I had mine done at the hospital under floroscope.Which I highly suggest.
They use a powerful x-ray machine called a floroscope and find the proper place to insert the needle. Sometimes if done by the naked eye it can take a few times to get the needle in the proper place.
I feel that an LP would be your next step.....It can definatly rule out alot.The LP results will point your doctor in the right direction....
I assume that that your ANA was normal...?????
I would suggest that you start a symptom diary. Write down anything that seems odd even if it is minor.Write down what you were doing,what you ate and anything that preceeds one of your "fits" as you call it...How long it lasts..Just anything and everything.Take it with you to your doctors appointments.....
I hope this helps.....
Theresa
Hello stormy
No I didn`t have.What is that exactly?
I mad MRT and some tests for ANA,especially Lupus....
No I didn`t have.What is that exactly?
I mad MRT and some tests for ANA,especially Lupus....
Have you had an LP?
Or any sort of neuroautoimmune/neuroimmunologic type testing?
Or any sort of neuroautoimmune/neuroimmunologic type testing?
@silkcut
I live in Europe but not in the U.K...
But I have a really good neuro too,he doesn`t believe that I am pure mentally ill and he made some strange questions at me but which I think was a bit unrelated to my head and neuro probs....
Although I have the feeling that he is a very good Dr. :)
When I told him for example that thing with the blood sugar feelings at one appointment he sent me to another good doctor who did an oral glucose tolerance test.
With normal results,but the problem is still existing.
I think that I will make a appointment soon because I havent seen my neuro for a longer time now and ask about the migraines and epilepsy...
I live in Europe but not in the U.K...
But I have a really good neuro too,he doesn`t believe that I am pure mentally ill and he made some strange questions at me but which I think was a bit unrelated to my head and neuro probs....
Although I have the feeling that he is a very good Dr. :)
When I told him for example that thing with the blood sugar feelings at one appointment he sent me to another good doctor who did an oral glucose tolerance test.
With normal results,but the problem is still existing.
I think that I will make a appointment soon because I havent seen my neuro for a longer time now and ask about the migraines and epilepsy...
I agree with you and your neuro about the systemic symptoms of migraine - there's often something else behind it.
And you're absolutely right, many neuros have very little idea about migraine. I know an excellent specialist in the UK if anyone's interested.
Where do you live, sweetwoman??
samxxx
And you're absolutely right, many neuros have very little idea about migraine. I know an excellent specialist in the UK if anyone's interested.
Where do you live, sweetwoman??
samxxx
This is sort of a DX of exclusion....
My neuro happens to be not only an MS specialists but she is also a migraine specialists aswell....I got real lucky finding this one...
When I was describing my symptoms in regaurds to my headaches she told me I fit the migraine varient to a tee.....And various tests had excluded some other things...
I would recommend going to a Migraine specialist .
Not all neuros are familure with the havoc migraines can cause.....
But migraines can also be a symptom of something else too.....I am seeing another Rheumy and going through a new battery of tests....I have other odd things going on..The rheumy believes my migraines are a symptom of something systemic...We shall see......
Take care, Theresa
My neuro happens to be not only an MS specialists but she is also a migraine specialists aswell....I got real lucky finding this one...
When I was describing my symptoms in regaurds to my headaches she told me I fit the migraine varient to a tee.....And various tests had excluded some other things...
I would recommend going to a Migraine specialist .
Not all neuros are familure with the havoc migraines can cause.....
But migraines can also be a symptom of something else too.....I am seeing another Rheumy and going through a new battery of tests....I have other odd things going on..The rheumy believes my migraines are a symptom of something systemic...We shall see......
Take care, Theresa
But how do you get those types of migraines diagnosed?
It is maybe a silly questions but what tests should be done?
yours sweetwoman :)
It is maybe a silly questions but what tests should be done?
yours sweetwoman :)
Not all migraine varients cause a headache....Acephalgic migraines cause aura without an actual headache.Aura can take on many different forms....Most people suffer from several different types....
two days in two months I wanted to say (migraines), but when I have it it is heavy but not chronic luckily.
Hello Stormy Renee
Yes I was also checked for Hep C and HIV (I am not a risk person) but they went back negative luckily.
Migraines I have about two days in a month but mostly they are not related to the fits but I sometimes have confused thinking for some days after a migraine episode.
But with this strange fits I almost never have a headache and then I am a bit mental confused for some weeks after it.
Very strange but I also thought about hormones,they have checked thyroid,hypothalamus,adrenal glands,sexual,....
Yes I was also checked for Hep C and HIV (I am not a risk person) but they went back negative luckily.
Migraines I have about two days in a month but mostly they are not related to the fits but I sometimes have confused thinking for some days after a migraine episode.
But with this strange fits I almost never have a headache and then I am a bit mental confused for some weeks after it.
Very strange but I also thought about hormones,they have checked thyroid,hypothalamus,adrenal glands,sexual,....
Sorry I forgot to add this....
But you mention Liver/stomach pain...
I have the exact same thing..All my previous liver/kidney fuction tests have been normal...But my Rheumatologist is testing me for Hepatitis C because of all my issues...You might want to look that up too....It does not cause traditional Hepititis symptoms......
Theresa....
But you mention Liver/stomach pain...
I have the exact same thing..All my previous liver/kidney fuction tests have been normal...But my Rheumatologist is testing me for Hepatitis C because of all my issues...You might want to look that up too....It does not cause traditional Hepititis symptoms......
Theresa....
Hi,
Poor thing....Yes that does sound very frustrating...
I want to throw somthing out there...
Has anyone ever mentioned the possibillity of MigrainesVarients?
I know you mentioned that you suffer from Migraines but these are very different and can cause very weird symptoms that do not seem related..Also you can have these and not have an actual headache...What you describe sounds like an Aura to me.
It also sounds like you go through all 4 stages of the migrainal process to a tee.
I have very simular symptoms to you....I was diagnosed with Hemiplegic and Acephalgic migraines. They are varients. The Hemiplegic mimic stroke and cause real muscle weakness and prolonged aura sometimes for weeks afterwards....The Acephalgic are basically aura wothout an actual headache phase.They can be brief and are usually over and done with with in an hour....Migraines can change your entire personallity because of what they do to the brain.Theres just so much info it's just way to much to list here...
Please look up Migraines and Migraine Varients/Eqivalents......I think you might be surprised.....
Please Take Care,
Theresa
Poor thing....Yes that does sound very frustrating...
I want to throw somthing out there...
Has anyone ever mentioned the possibillity of MigrainesVarients?
I know you mentioned that you suffer from Migraines but these are very different and can cause very weird symptoms that do not seem related..Also you can have these and not have an actual headache...What you describe sounds like an Aura to me.
It also sounds like you go through all 4 stages of the migrainal process to a tee.
I have very simular symptoms to you....I was diagnosed with Hemiplegic and Acephalgic migraines. They are varients. The Hemiplegic mimic stroke and cause real muscle weakness and prolonged aura sometimes for weeks afterwards....The Acephalgic are basically aura wothout an actual headache phase.They can be brief and are usually over and done with with in an hour....Migraines can change your entire personallity because of what they do to the brain.Theres just so much info it's just way to much to list here...
Please look up Migraines and Migraine Varients/Eqivalents......I think you might be surprised.....
Please Take Care,
Theresa
Hello silkcut
Thanks for your fast response. :)
Yes I thought it over very carefully,although being healthy most of the time inbetween or having only mild symptoms (but which can also bother about health if they are sometimes going on for some weeks before they disappear).
The real serious and scary things are not chronic,luckily.
Think you are right, it must be a kind of "fit disorder" like epilepsy...
I also thought about something epileptiform,but doctors at the psychiatric evaluation station where very ignorant when I asked them for an EEG.
They found nothing abnormal on MRT and then said to me they will only do an EEG,if I were there lying on the floor and cramping and that never happened to me!!?
They said I just have panic attacks,although telling them that they are very often related to food intake !
But I know a good neurologist/psychiatrists who is doing an EEG with every patient and I soon will make an appointment there...
Best wishes to you too :)
Yours sweetwoman
Thanks for your fast response. :)
Yes I thought it over very carefully,although being healthy most of the time inbetween or having only mild symptoms (but which can also bother about health if they are sometimes going on for some weeks before they disappear).
The real serious and scary things are not chronic,luckily.
Think you are right, it must be a kind of "fit disorder" like epilepsy...
I also thought about something epileptiform,but doctors at the psychiatric evaluation station where very ignorant when I asked them for an EEG.
They found nothing abnormal on MRT and then said to me they will only do an EEG,if I were there lying on the floor and cramping and that never happened to me!!?
They said I just have panic attacks,although telling them that they are very often related to food intake !
But I know a good neurologist/psychiatrists who is doing an EEG with every patient and I soon will make an appointment there...
Best wishes to you too :)
Yours sweetwoman
Hi sweetwoman and welcome
That's a full list you have there - you've obviously thought carefully about all this. It sounds like you have a lot of bothersome things going on. How frustrating for you!
We obviously can't diagnose but I'm wondering if you've had an EEG for epilepsy/epileptiform conditions? Epilepsy can give people the most weird physical and cognitive sensations - as well as food cravings and what feel like panic attacks.
best wishes
sammxx
That's a full list you have there - you've obviously thought carefully about all this. It sounds like you have a lot of bothersome things going on. How frustrating for you!
We obviously can't diagnose but I'm wondering if you've had an EEG for epilepsy/epileptiform conditions? Epilepsy can give people the most weird physical and cognitive sensations - as well as food cravings and what feel like panic attacks.
best wishes
sammxx
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