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.
