Upcoming neuro appointment. Scared!

bensmith

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I have started having frequent seizures. I am almost certain it is autoimmune encephalitis. I also think i am having intercranial hypertension. Eye pain, vision changes, neuralgia sometimes. Headaches.

I am bad at doctors. Should i give a narrative? Just the most important symtpoms? Every symptom? Should i say something bad happens/changes every 3 to 7 days? That its progressing? Im starting to lose conciouness like you @lenora. I feel i am about to take a huge test, this is the first time i am seeing this doctor.

what about this: full disclosure im autistic, and extremely nervous as i feel my need is urgant, so i feel a bunch if pressure for timely testing. I think i have a daignosis of ae.

prob stupid i know but im almost having a panic attack about this. I guess i have medical abuse ptsd or somethint....

my family abuse also bad and giving me fits. Shit thought this was all under control.

i was going to see an ae specialist person in the summer but my old doctor torpedoed it(possibly mom too)

i guess how prepared are you for a first neuro appointment? Like a binder of stuff?
 
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lenora

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Hi Ben....OK, I'm not a doctor nor in any position to be giving medical advice, but it's not uncommon to have anxiety with ME. Many of us are victims of it, and I wonder if you've given it any thought? In order to control it, you may have to have some sort of therapy and/or a non-addictive medication. Now mine worked for many years, but then a bad health situation drove me into another class of med. So you should start at the lowest, mildest form of med and see where it goes until then. You may also consider going for cognitive therapy...see what you doctor says. Most of them try....we are a collection of symptoms and sometimes it's very hard to piece together, even for those of us who have the illness.

Yes, by all means make a list of your most troublesome problems and may I suggest that you add the time of day you're feeling them. Also, what were you doing beforehand i.e. listening to the news, something upsetting, being on the Forum and seeing what others have been through....all of these things help to add up to an answer.

OK, you're autistic. Lots of people are and there are lots of ups and downs with the illness. Sometimes it goes off in different directions and then you're somewhat focused again. You shouldn't be discounted because of that.

Now your home situation: From what I read I gather that your eating schedule and the foods you'll eat is one of the biggest problems. Is it possible to be a bit more flexible with respect to that? Eat when you family does, and ask your Mom to prepare extras of one of your favorite foods, carrots for example. (Not saying it is carrots, but just using them as an example). Then eat mainly carrots, but try tiny bits of their food also. GI issues change all the time. I know, b/c like most people on here, I have them.

If you think you have AE, write down the symptoms and how you feel they appear. That goes for all major symptoms. What do you do all day...your Dr. will probably ask you that. Is it possible for you to center your mind at all? Anxiety/panic disorder is a terrible way to live....I know it well. Perhaps if that's brought under control, some of your worst symptoms may stop.

I agree that you're in a difficult position, but only Ben can really pull back the curtain and let others enter. I gave you a list of what to do about Dr.'s visits about a week or so ago....look at that and then make the suggested 3 lists. One that you'll tell the doctor about, one with all the symptoms that you may choose to keep to yourself during the first visit, and then a list of your medications. Show that you're able to take control of yourself and your meds. Show that you're really trying...it's possible to have autism and something else physically going on. Listen carefully (read that again) to what the Dr. is saying and don't get mad or upset. You want to be a person in control. polite and well presented. Not overdone, but clean clothes, a clean Ben, you get what I'm saying.

Even with AE I certainly was able to do things around the house. If you haven't had a major seizure yet, then chances may be great that you don't have AE. Let the doctor decide. What type of Dr. are you seeing? A neurologist can rule out so many different illnesses. Understand that the entire time you're with the Dr. he's doing an exam of you. Not just when you're asked to lay back while he checks thing out. Even when you're dressed and sitting an exam is going on & that's good. Neurologically they can tell a lot by the way you walk, sit, your eyes and so many other things.

If this is a first visit, it may be the longest, so do get on with those lists. If he asks questions, answer them truthfully b/c you have no idea what's going on his/her mind. You can't assume anything. He/she may rule out causes of what may be hidden illnesses. Fine, have the tests in order to just get that illness out of the way. I hope you aren't going today b/c you really need to make a proper list. And don't watch negative things or listen to negative people. Be as easygoing as possible with your family...try to make your stay with them as pleasant as possible. Beyond that I can't offer anything to you. I wish you all the best. Yours, Lenora.
 

bensmith

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Ty very much @lenora

i have made a list! One anyway, of all relevant symptoms. I am trying to do the food thing its going ok enough. My mast cells are kicking my butt but im hoping for more liq food tomoreow! I have been eating their food so tasty!

i think ae can be slow going many others thst have been daignosed jsve been. Its a wide spectrum. I will try and remain positive, new symptoms alwas scsre rhe hell oit of me! Lol.

sorry just bad crash+my ptsd stuff pr anxiety. I understand and appreciste hour concern. : )
 

5vforest

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@bensmith I am wishing the best for your appointment, I hope it is fruitful. I don't have much advice to add to what @lenora already said. The more you can write out and/or document ahead of time, the better. Unfortunately with the way medical care works in this country, most doctors won't have time to look at an entire binder of documentation. But if you can condense things into a page or two, that might prove very useful.
 

Sophiedw

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Hey Ben, what are you seizures like? I get seizure activity of sorts but they aren't like grand Mal. I also lose consciousness a bit but it's very brief and also lose muscle tone. Like drop my head or phone. I've got on top of mine quite a bit so wondering what yours are like?

Good luck with the doctor. Ask if you can record the appointment on your phone so you can re listen to the things that are said. I also think that makes doctors less likely to be dismissive of your illness, so is a good general point as well.
 

bensmith

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I have two. I have jerks going to bed and falling asleep(dozens a day, but i hear they are ok). But i also started havint these spells. Sometimes preceeded by terror. The spells start with euphoria often. I eventaully fall into another way “spell” and the feel very odd. Breathing can be effected. I can fall into dreams. I have trouble mvoing and feel frozen. Eventaully it ends.
I also have this weird like suezy feeling that can last a long time. Its all new to me. Also eye shakes and maybe rarely body shakes a bit. I also wake up sore lately.
 

Hipsman

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I only had one appointment with neurologist (I think it was the first dr I made appointment with), he knew nothing about ME/CFS. I think neurologists treat symptoms, not conditions, so wouldn't keep hopes high. However, if he is empathetic I think he might refer to a good immunologist or just someone who knows about ME/CFS...
 

Alvin2

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Tell them your symptoms but not what you think it is.

This way you don't look like your being condescending by telling them how to do their jobs or that you are smarter then them or that you are more interested in self diagnosis vs their professional experience. Or that you are a hypochondriac.

Be thorough but not pedantic.
And don't tell your parents who you are seeing if you can get away with it. Or wait until the night before. You can also tell a doctors office that your family is trying to prevent you getting medical care so you do not authorize them to speak on your behalf or agree to let them speak with the doctor on your behalf. You do not have to tell them why. And don't let them in the room during the appointment.
 

Strawberry

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I definitely would make a complete list of symptoms and how often they happen, and tell the doctor you have no true idea how relevant they are, but let him/her read the list and make the determination themselves. If they are a really good dr, they might recognize a cluster of symptoms and refer you to someone else to investigate other avenues.

Also, a neurologist will want an mri. You might be able to get the right ones for dr B to investigate. You still need to get neck and cranial instability ruled in or out, so try to kill two birds with one stone.

And I second what Alvin just posted!

Best of luck, you know we are all here for you.
 

Alvin2

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And I second what Alvin just posted!
Thanks :)

I definitely would make a complete list of symptoms and how often they happen, and tell the doctor you have no true idea how relevant they are, but let him/her read the list and make the determination themselves. If they are a really good dr, they might recognize a cluster of symptoms and refer you to someone else to investigate other avenues.
+1
And if you don't get anywhere ask for second, third, fourth, however many opinions it takes to get to someone who has answers. And yes i know how hard this is but its the only avenue you can pursue, not finding treatment will not get you better.
If its long covid do whatever it takes to find someone who is seeing patients with it.
 

crypt0cu1t

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Hi Ben....OK, I'm not a doctor nor in any position to be giving medical advice, but it's not uncommon to have anxiety with ME. Many of us are victims of it, and I wonder if you've given it any thought? In order to control it, you may have to have some sort of therapy and/or a non-addictive medication. Now mine worked for many years, but then a bad health situation drove me into another class of med. So you should start at the lowest, mildest form of med and see where it goes until then. You may also consider going for cognitive therapy...see what you doctor says. Most of them try....we are a collection of symptoms and sometimes it's very hard to piece together, even for those of us who have the illness.

Yes, by all means make a list of your most troublesome problems and may I suggest that you add the time of day you're feeling them. Also, what were you doing beforehand i.e. listening to the news, something upsetting, being on the Forum and seeing what others have been through....all of these things help to add up to an answer.

OK, you're autistic. Lots of people are and there are lots of ups and downs with the illness. Sometimes it goes off in different directions and then you're somewhat focused again. You shouldn't be discounted because of that.

Now your home situation: From what I read I gather that your eating schedule and the foods you'll eat is one of the biggest problems. Is it possible to be a bit more flexible with respect to that? Eat when you family does, and ask your Mom to prepare extras of one of your favorite foods, carrots for example. (Not saying it is carrots, but just using them as an example). Then eat mainly carrots, but try tiny bits of their food also. GI issues change all the time. I know, b/c like most people on here, I have them.

If you think you have AE, write down the symptoms and how you feel they appear. That goes for all major symptoms. What do you do all day...your Dr. will probably ask you that. Is it possible for you to center your mind at all? Anxiety/panic disorder is a terrible way to live....I know it well. Perhaps if that's brought under control, some of your worst symptoms may stop.

I agree that you're in a difficult position, but only Ben can really pull back the curtain and let others enter. I gave you a list of what to do about Dr.'s visits about a week or so ago....look at that and then make the suggested 3 lists. One that you'll tell the doctor about, one with all the symptoms that you may choose to keep to yourself during the first visit, and then a list of your medications. Show that you're able to take control of yourself and your meds. Show that you're really trying...it's possible to have autism and something else physically going on. Listen carefully (read that again) to what the Dr. is saying and don't get mad or upset. You want to be a person in control. polite and well presented. Not overdone, but clean clothes, a clean Ben, you get what I'm saying.

Even with AE I certainly was able to do things around the house. If you haven't had a major seizure yet, then chances may be great that you don't have AE. Let the doctor decide. What type of Dr. are you seeing? A neurologist can rule out so many different illnesses. Understand that the entire time you're with the Dr. he's doing an exam of you. Not just when you're asked to lay back while he checks thing out. Even when you're dressed and sitting an exam is going on & that's good. Neurologically they can tell a lot by the way you walk, sit, your eyes and so many other things.

If this is a first visit, it may be the longest, so do get on with those lists. If he asks questions, answer them truthfully b/c you have no idea what's going on his/her mind. You can't assume anything. He/she may rule out causes of what may be hidden illnesses. Fine, have the tests in order to just get that illness out of the way. I hope you aren't going today b/c you really need to make a proper list. And don't watch negative things or listen to negative people. Be as easygoing as possible with your family...try to make your stay with them as pleasant as possible. Beyond that I can't offer anything to you. I wish you all the best. Yours, Lenora.
I'm not sure I agree with the fact that you HAVE to have seizures with to have AE. I have AE and I've never once had a typical grand mal or anything
 

lenora

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Hi @crypt0cu1t ......It's OK, you don't have to agree with me. Yours may be typically different from what I'm dealing with. It's the part of the brain that's affected that is the problem. Now say I get AE again, it's highly possible that a different part of the brain can be hit and I'll have more in the way of psychiatric problems.

I'd appreciate receiving any input your specialist gave you during your visit. So few really know anything about AE. I don't believe that what I was told is the whole story...yet. The seizures are epileptic in form and difficult to deal with. But they're the least of my problems. I hope you're doing better. Yours, Lenora.
 
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lenora

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Hi Ben....Well, that was good coverage, wasn't it? The only thing that I question and perhaps you have already thought of this is: We all need someone to go on a doctor's visit with us. The illness is quite difficult to understand everything that is being said in itself, let alone something extra. I can still find it confusing at times, and my husband's great about being my other-half. Do you have a friend, an aunt....someone you feel who will be fair with you, too?

As far as the seizures go, it's possible that you don't have them b/c that part of your brain isn't affected. Or yours may be more like @Sophiedw 's. Again, this isn't an easy thing to diagnose and a lot of it will depend upon the doctor him/herself. I don't even know what type of doctor you're seeing.

For our basic condition, ME, the following are usually the best: Neurologist, Rheumatologist, Immunologist and yes, your Internist (possibly the only one who can put it all together). Now this depends upon each doctor and even how many patients they have that day. Remember that. It's OK to tell them you're afraid, that you're fighting mental conditions and are making every effort to overcome them, and then you were hit with this other thing (it's in the records, anyway). It's difficult for all of us, I just happened to come across some very helpful doctors a long, long time ago. I hope you'll find someone who will try to be your advocate. Yours, Lenora.
 
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lenora

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@lenora did they give you anti seizure meds, did they control the epilepsy? Have you tried steroids or ivig?
Yes, Ben my seizures have been controlled. It would appear to be epilepsy, but I keep getting different opinions on all of it. It's not unusual to get seizures as you get older, so it's possible. I'm on one the strongest drugs available to control them at the moment and have been told that I'll need it for the rest of my life. Right now I'm having to follow medical advice only....I have a lot of things going against me. (Remember that while you're still young, I'm not.) Just keep telling yourself that you will be safe and are in a safe place now. Learn to comfort yourself....it can be done. Often we learn it in childhood, but is a good thing to know throughout life. Yours, L.
 

bensmith

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Saw neuro. Thanks for all the help guys.

he took all notes on a posted note...

didnt seemed concerned about anything. Said sueziures are prob mental health issue. I agree but lack of concern worries. I said i was also trying to get an mri for my cci, so i asked what kind of mri he was going to prescribe. Long story short he didnt give me a mri prescription. I told him about my eye socket pain and he said it could be dry eyes and to go see a eye doctor. And neuralgia...i think he said it could be from eye pain. That isnt even possible?

Anyway the tone and the fact he was implying my seizures were psych and my eye pain and vision changes and face nerv pain was from dry eyes was concerning. Soooo hard to get people interested and want to help for some reasom.

he could be right about stress seizures, hope so. Not sure I’m going to get much of a look beyond that.
 
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