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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 11 of 11. This is the beginning of the thread.
Posted by bookgurl99 on September 6, 2002, at 23:03:02
So, as many of you know, I've been dealing with strange neurological symptoms for 6 months that have as unyet been diagnosed. (Memory problems, some episodes of slurred speech, visual problems, etc.) So far I've been told that I have 'anxiety,' and that 'anxiety' caused my symptoms, which in the beginning I was inclined to believe because I _wanted_ to believe that this was just anxiety. Recently, some of my symptoms got worse and I feel that doctors missed the boat somehow the first time around. (I had a seizure last week, etc., and will be seeing a specialist in Chicago next month.)
During this time, my therapist has gone from being supportive about the illness (she actually cried when I first called her about it) to (to my perception) feeling that she is supporting me through my 'nervous breakdown.' I also get the feeling that she is getting bored that I don't snap out of this. When I complain about what I'm going through, she says things like that I'll get used to being cognitively slower.
She mentioned having a client who was sick "even worse than you" for 5 years until the client gave up trying to find out what was wrong and miraculously recovered; the message is clearly that I should give up too. And you know, I _have_ done what I should; taken zoloft, exercised, gotten a regular schedule, reduced stress, blah blah blah.
I feel that when I discuss my concerns -- dr's overlooking something because I've been pre-labeled an anxiety case -- that she doesn't want to 'support' me because she doesn't want to reinforce the idea that something is organically (outside of mentally) wrong with me. She downplays the importance of my symptoms, and tends to talk about nonrelated things. But _this_ is what I'm dealing with right now.
Part of her behavior, I know, comes from that I've already had scores of tests and nothing conclusive has been found. But the truth is that, I know that some disorders take years to diagnose. (People call certain doctors 'saviors,' because in certain disorders, only the dr that finally dx'd and treated a problem once it's bad enough for modern medicine to pick up on it gets the credit.) I also think that my therapist, being the soft-hearted type she is, would rather believe that I am having a nervous breakdown than that I have something that truly could not be cured.
When it comes to the delegitimatizing of what I am going through, I am annoyed, and troubled. I never really trusted a therapist before and worked with her for two years before getting sick. I am annoyed that even though she admits to seeing a difference in me, she doesn't really believe what I am going through. (Or rather, she believes that I believe it, if you catch my drift.) I don't feel that another therapist would really understand what I'm going through, because they didn't know me before. But why can't this one get it?
How am I supposed to deal with this? I don't want to stop having sessions with her, because so much is already changing and falling apart in my life due to this mysterious, sudden illness. Plus, I never had a therapist that I trusted before. But I am also not getting what I need out of therapy right now.
Is there a way of getting my therapist to be on the same page right now? Should I just lay it out there and tell her that I need her to support me in this and not belittle what I'm going through? I mean, I think I should not have to spend my time in therapy _not_ being supported, you know?
So frustrated,
bookgurl99
Posted by Dinah on September 7, 2002, at 9:25:10
In reply to feeling p****ed off at therapist, posted by bookgurl99 on September 6, 2002, at 23:03:02
Well, I hate to state the obvious, but can you print out your post and bring it to your next session to discuss it? I think it's probably best to try to work it out with her, since you have so much invested in her. It might not work, but then again it might.
I'm having therapist troubles myself right now, so I really empathize. But my views might be colored by my thoughts about my own therapist too.
Posted by madison88 on September 7, 2002, at 14:58:53
In reply to feeling p****ed off at therapist, posted by bookgurl99 on September 6, 2002, at 23:03:02
the fact that she cried really turns me off. therapists are supposed to be professional. her behavior--crying, getting bored, not taking your symptoms seriously, it all sounds less than professional. I really sympathize with you. I have been having minor seizures myself, but in my case my therapist recommended a neurologist and has taken me seriously.
i have been worried that i am just a hypochondriac, but my therapist has assured me otherwise. some of your symptoms could be caused by anxiety and by the Zoloft. When i took the stuff i remember feeling a bit slow, my head a bit muddled. I felt like i was slurring my speech. I like Paxil a lot better for anxiety. Then again, these symptoms could be signs of a "biologically" based illness. I would definately rule anything you can out. Just keep in mind how much these symptoms bother you and weigh them against the time and effort you put into searching. don't let it take over your life.
as far as the therapist goes, i would definately discuss your frustrations with her. if you can't get anywhere, it is time to find a new therapist. from what you have said, she may not be professional enough to handle your criticism. i realize the hardest time to switch therapists is when you are as uncertain about things as you are right now, but it may be worth it in the long run. if you can't trust her judgement, the effectiveness of therapy is severely compromised. wish you the best.
Posted by J200 on September 9, 2002, at 11:20:11
In reply to feeling p****ed off at therapist, posted by bookgurl99 on September 6, 2002, at 23:03:02
It sounds to me like what you need is a good neurological and physical workup rather than multiple visits to a therapist. The symptoms you describe are not classic anxiety symptoms, but rather possibly the beginnings of a neurological disease. I've had friends and relatives who have had diseases such as MS and ALS that can present with such symptoms, so you need to have those problems excluded now, or treated if they are indeed present. There are a whole host of possibilities, some very serious diseases, some more of a nuisance than anything else.
Posted by bookgurl99 on September 9, 2002, at 12:08:40
In reply to Re: feeling p****ed off at therapist, posted by J200 on September 9, 2002, at 11:20:11
> It sounds to me like what you need is a good neurological and physical workup rather than multiple visits to a therapist. The symptoms you describe are not classic anxiety symptoms, but rather possibly the beginnings of a neurological disease. I've had friends and relatives who have had diseases such as MS and ALS that can present with such symptoms, so you need to have those problems excluded now, or treated if they are indeed present. There are a whole host of possibilities, some very serious diseases, some more of a nuisance than anything else.
JNP, this is what I've been thinking. But I had a workup -- ct scan, mri w/o contrast, eeg -- that showed nothing. So my docs have decided that -- since I was being treated for anxiety, that it was "anxiety." My therapist at first was quite concerned, but now believes in the anxiety dx too because of all the tests that have been done. I'm horrified. I expect her to somewhat legitimatize the changes in me, because the doctors need to hear that in order to consider some of the more unusual diagnosis that could be causing my problem.
It's a horrid situation to be in. I know that I'm not crazy, and of _course_ these symptoms make me anxious. It's no fun to lose mental agility at age 26. But the questioning of dr's and my long-trusted therapist are tremendously disheartening.
I _will_ confront her about it tomorrow, how I need her to believe me and support me. I wonder if she's too attached to accept that something could be seriously wrong with me; you know, after years of supporting me, just wanting me to have something treatable rather than something mysterious.
Thanks for the support.
Posted by medlib on September 16, 2002, at 21:43:59
In reply to feeling p****ed off at therapist, posted by bookgurl99 on September 6, 2002, at 23:03:02
Hi Bookgurl--
I saw your earlier posts, but got sidetracked before I managed to reply; sorry I'm so belated. I certainly empathize with your feelings about your decline in cognitive abilities. I think that those who are born with special abilities of any sort tend to develop self images dominated by those traits--especially if below normal in other areas (as I am). In such cases, losses or declines feel like a limb's being amputed or you're bleeding out from a major hemorrhage--very self-threatening. I've heard many people express it as "I'm just not me anymore." Calling something like that "just anxieties" is insulting and demeaning, not to mention inaccurate. No wonder you're p.o.ed! They should be grateful you haven't yet reached "outraged".
People used to describe severe anxieties as "just nerves", meaning "she's doing it to herself and could stop if she really wanted to." It's depressing that some professionals can't get past that attitude, even though they "know" better. But then, PET scans have shown that people (normals) make decisions using the affective (emotional) areas of the brain, not the frontal cortex (intellectual area), as one might suppose. Ex- Knowing that factoid does *not* make me more tolerant of fools--especially professional ones I'm paying, Even though I know that they're only victims of their brain structure. I continue to view them as lazy or ignorant. See how that works?
Re "inaccurate": If you're feeling masochistic enough to wade through masses of medical verbiage, you could search Google for "seizure differential", or "pseudoseizure differential" or "psychogenic seizure differential". If you select urls from emedicine or universities, you can get an idea of what else might have caused your seizure that they haven't tested for.
Seizures are something I know a bit about (my son's had epilepsy since he was 13). If it's not inappropriate, would you be willing to answer a few questions about your seizure and/or cognitive impairment? Or what kind of specialist you're seeing next month? If not, I'd certainly understand.
Btw, at least in large cities, neurologists tend to specialize by disease entity; my son's neuro sees only epileptics. Others in his group practice see only Parkinsons, or only Alzheimers. General neuros are becoming rare birds. Hope you find someone who has the knowledge and will take the time to sort it out for you. Please let me know if I can help in any way. Good luck!---medlib
P.S. My son's *never* had an abnormal test result, and that's not all that unusual. Seizures can be very hard to document--especially if they can't be evoked in the lab. Do try to hang in (although a little impatience or a hint of exasperation wouldn't be unreasonable at this point, IMO). Uh-oh, I feel a rant coming on--better stop.---m
Posted by bookgurl99 on September 18, 2002, at 11:39:43
In reply to Re: feeling p****ed off » bookgurl99, posted by medlib on September 16, 2002, at 21:43:59
Hey medlib --
I'm visiting a neuro-immunologist. The reason, basically, is that my symptoms have been most consistent with immunological disorders of the CNS, such as M.S. These disorders are typically hard to treat or dx, and a specialist could help me rule them in or out. (Plus, I think a specialist would understand some of the 'abnormal' lab findings I've had that MD's at my small-town doctor couldn't understand).
As far as the seizures, they've really taken me by surprise. I don't think they're pseudo-seizures; I guess I associate pseudo-seizures with 12-year-olds who don't understand medicine and need attention. I don't think mine are psychogenic because my symptoms overall came on when my life was great and relatively stress-free. I know they're not complete petit mal because I retain consciousness, but that feeling of having my head plugged into a socket and my body jerking uncontrollably is unmistakable.
As for my identity, yeah it's a major identity issue. I've had a near-genius iq my whole life and suddenly I'm "normal." (Thankfully I still do NOT vote Republican.) I'm used to a certain set of expectations about the future, and now I'm confused about it. Can I still do what I was planning to do with my life? This is part of why I'm continuing to see specialists; so I can have more information about what to expect.
But I really do miss thinking a lot, thinking rapidly, manipulating information and theories and being more concise.
:D
Posted by bookgurl99 on October 3, 2002, at 21:33:29
In reply to Re: feeling p****ed off » bookgurl99, posted by medlib on September 16, 2002, at 21:43:59
I saw a medical specialist in Chicago this week. He believed me, and said "I'm sorry, you don't get reflexes like yours just from anxiety. It's real." (Reflexes referring to the neuro test where they hit your knees with a rubber mallet and suchlike.)
I'm so relieved to have met a dr. who believes me. He believes that I either have an autoimmune cerebritis, or severe, painless migraines (which I understand can be similar to seizures in their effects at times). Either way, there is an effective treatment and hope for me in the future.
Thanks,
bookgurl99
Posted by Susang on October 4, 2002, at 10:03:28
In reply to RELIEF » medlib, posted by bookgurl99 on October 3, 2002, at 21:33:29
That is great news! It must feel fabulous to finally have some possible answers. I hope you and your doc can get things worked out for you asap.
Take care,
Sue
Posted by Dinah on October 4, 2002, at 10:30:05
In reply to RELIEF » medlib, posted by bookgurl99 on October 3, 2002, at 21:33:29
I'm so happy for you. Especially since there is effective treatment. :)
Have you spoken to your therapist about this yet? I know you were frustrated by thinking she did not believe in a physical cause.
Congratulations in being an advocate for yourself, and finding the help you need.
Dinah
Posted by Mashogr8 on October 4, 2002, at 14:49:05
In reply to Re: RELIEF » bookgurl99, posted by Dinah on October 4, 2002, at 10:30:05
bookgurl, You are such an empathetic person. I am glad that you have found that,at least, there is some hope on the horizon. You deserved to have someone hear you and really listen, observe and react and not give up on you. Good luck and thanks for your concern for others.
MA
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