Disappointed in UCLA
 

i have had a disappointing day and it's all my fault. i should not have put all my eggs in one basket, or looked to this UCLA appointment as my big white hope. I had high expectations because I thought it was the light at the end of the tunnel. the appointment was the single worst doctors appointment that i've had. for the record UCLA specializes in myasthenia gravis as part of their neurology department, but here was my experience...first, 2 apprentices came in and took my "story" about my experience; they bring it to the doctor; then the doctor comes backs with 6 people, so they can listen and learn and the doctor proceeds to tell me that based on the history provided he doesn't think that i have myasthenia gravisat all and i should put it out of my mind; rather, he thinks i have major depression and as i am getting older it is expressing itself in different ways. first of all, it would be great if i didn't have myasthenia gravis, but i would like to know what it really is. telling me that i am depressed because i have a history of dispression doesn't solve the problem. and to be honest, i understand the mind and body and heart are all interconnected and it's entirely possible that my messed up life has had an influence on the workings of my mind, body and heart; but, that's not the answer. i am not buying it. i don't even feel depressed right now, or even for the past few years. i am independent, i apply myself, i am constantly growing, i have friends and family that love me and whom i love, i have positive outlets for when i come accross challenging situations, and i've learned to communicated way better when i am frustrated. that to me is not depression. depression is unmet expecations. for example, right this exact moment, i can say i am depressed about the way the appointment went, but i am not depressed in general. it is situational. i am not a depressed person. i am happy. i am positive. it was very discouraging to hear that evaluation. the doctor re-ran a couple of blood tests that were done 3 yrs ago to double check that i don't have myasthenia gravis basically to cover his azz and wants to re-examine the muscle tissue himself from my biopsy in Oct. and that was it. now he reports that back to my neurologist and we take it from there. i am thankful for my neurologist because his goal is to get to the bottom of what's going on and i know he will.

today was really frustrating. i felt so pigeon holed. i just want an answer and to get better. i am so tired of feeling weak and fatiqued. today put a dent in my hope. i'm gonna go read some quotes to inspire myself.

i have my next appointment with my neurologist on 1/25, we'll see what he says and where we go from here.

No, it wasn't your fault at all. And I'm sorry the appointment went that way.

I am seriously starting to wonder if neurologists get some kind of pay back by not giving an MG diagnosis. Or any diagnosis.

While this neuro "may be" an MG expert, he is NOT a CMS expert. How did he explain the biopsy results? Or did he think your muscle is depressed too? :eek:

How old are you, if I can ask? I'm 52, have MG and am depressed. Why am I depressed? Because I have MG and it won't let me do what I want to do!!!!

His conclusions were not very scientific, especially since he didn't appear to give you good enough reasons why you don't have MG. You may have one of the CMS's - didn't he even consider that? It is SUPPOSED TO BE considered when someone is seronegative and the clinical exam (and biopsy) are positive for destruction in the NMJ.

I literally cannot handle how you were treated. You weren't at fault and this guy was "showing off" in front of the students or residents, whichever they were. I'll bet you an EMG he was.

Do you have a full copy of the biopsy report? Are you going to send it and your biopsy slides to UC Davis and be seen there?

Listen to your instincts. There is something going on beyond any "mental" problem! ;) All neurologists aren't psychiatrists first but they sure do act like they are.

Gather evidence. Take a deep breath. See a neuro-ophthalmologist if you haven't. See a shrink to prove you're fine. Get breathing tests. Get some ice cream. Get that biopsy result. Then go get some help!

:hug:
Annie

I think that's a very good distinction you make about depression. If I'm depressed about something bad that's happened, that's not any kind of mental or emotional illness; that's my emotions functioning properly. It's feeling negative emotions that aren't a response to anything outside of my head that constitutes depression.

It needs to be understood that a chronically ill patient who seems depressed might be down because he's sick, and not sick because he's down.

When I first got Graves' disease, I was hysterical. The doctor I went to assumed that I thought I was sick because I was a hysterical person. Actually, I was hysterical because I had Graves' disease.

Hang in there. Take Annie's good advice. Treat yourself well and gather strength to keep fighting, OK?

Abby

By the way, I heard "I don't think you have myasthenia gravis" several times before I got my diagnosis--once from the doctor who's currently treating me. So, evidently it doesn't necessarily mean that much.

I have also heard "You're a real puzzle" and "You're an enigma" a lot.

Abby

And my first reaction by a neuro in 2000 was, when I described to him what muscles were weak and why, "It takes a lot of stamina to chew a bagel." As if I were 90 years old, without teeth and had attempted to chew hard plastic.

Good ones, Abby!

Annie

Oh good grief!!:mad2: depresssion and getting older. What JERKs!! You didnt deserve such an idiotic cop out. It is not your fault. It is theirs for being biased and taking the easy way out and not advocating for someone who is obviouslly sick.

The last neuro tried a number of these things with me. She cover the gamut to try to get me to give up. She has a big surprise. Little does she know I have my mom and grandmoms genes. My mom looked 10-15 years younger than her age her whole life and has been told she is near the end more than once in the last 4 years with her emphysema. She always defies the odds. My Granmom lived to be 103!! Just because the last 4 years of these idiots have aged me in appearance it doesnt mean what is wrong is 'just aging.'

I am so sorry you got idiots. You deserve better.

Annie59:hug::hug:

just decided to copy something from the book I am writing.
the name of my book is "for better and for worth" about my never ending struggle to receive better treatment and be seen as worthy person, despite the horrible sin of having an atypical presentation of a relatively rare illness.

July 17, 2008
In Dr. Seuss's "Horton hears a who" there is a climax, where Horton is prosecuted by all the animals in the forest. They ask him to throw away the clover, and stop talking "nonsense" about people living on a speck of dust.
But Horton is loyal to himself and to the who's and refuses to do so, and is even ready to risk his own life.
The who's now have to show the world that they exist, in order to save themselves and their guardian elephant. So they join all their forces and make a huge racket, until they are finally heard by the offensive kangaroo.
I could stop here and be content with what my neurologist is saying: that I have a diagnosis, which he has no doubt about, but that overall it does not explain any of my significant symptoms.
So what does explain them? An inadequate emotional response?
What also concerned me was that my neurologist never came to see me during any of those episodes. He only received an account of them from his residents. It was me and my husband's words against theirs.
As a physician, it has happened to me quite a few times that patients and their family members called me about problems they thought were not managed properly by the residents in the ward.
I always came to see for myself, and most of the times the patients and their families were right. And the reason for that is simple. Patients and their families live with their illness for 365 days a year, for 24 hours a day. They learn to know their illness best. How could a resident, that sees the patient sporadically, for no more then 10 minutes during the day, reach the same level of knowledge, especially if the patient has a rare illness or an atypical clinical course that necessitates more precise observations?
I was hospitalized in a large MG center, in the first place, because it was obvious that I had an extremely atypical clinical course that baffled the best neurologists . Did it make sense to decide on my management based on the typical clinical course that his residents knew so well, or did my care require a different approach? Was it reasonable to ignore again and again the same unusual response that I had to the steroids, that was very similar to what I had experienced before? Did it make sense to repeat the same mistakes that were done in the past? Wasn't he aware of the fact that my illness did not fit the book? Why assume that it would start to now?

And last but not least, what is a "normal" emotional response?

A few months ago, one of our patients had a late relapse of his lymphoma. This patient was a leader in his community, a very active and innovative man. He was always ready to help and support others. He came to our department on a voluntary basis, and was ready to do any task. He fully recovered physically and emotionally from the lymphoma he had eight years earlier. The recurrence of his illness was devastating for him, and he was trying very hard not to show his fear and anger.
He was not one of my patients, but I knew him very well, so seeing him, I asked how he was doing. He surprised me by asking: "do you think I am normal?"
"Of course you are" I said, not understanding the meaning of his question, at first.
"No", he said, "Do you think it is normal for me to feel this fear of death?"
"yes" I said," I think that when we are faced with a potentially life-threatening illness, it is completely normal for us to fear for our life, more then that, we not only fear our death, but we fear the way it will come. We know that we are not immortal and that the angel of death will come to us one day what ever we do, but we do not want him to come prematurely and more then that, we do not want him to sneak on us. We want him to come in an elegant manner, in a nice limosine, give us his hand and treat us with respect, and politely tell us that it is our time to go with him. We do not want him to come sneaking, deprive us of our dignity and self-respect and make us suffer for a long time."
I could see the smile returning to the patient's face. "You are so right" he said, "How did you know how I feel?"
We then joked together about the angel of death, and the need to feel that you are a "person", despite your illness.
I then went back to the question of "normal".
"I do not think there is any "normal" response to an illness", I said, "in order to define "normal", you need to have a significant group of people facing the exact same problem. I have seen so many different responses to illness that I find them all normal. I am only concerned when a patient stops caring, or feels he is unable to cope with his illness any more, and I do not mean a temporary moment of despair, but a much more prolonged response, that affects his entire life.

A few days later his wife came to me. She apologized for "wasting" my precious time. I told her that I did not see it as wasted time and I saw it as an integral part of being a physician. She then told me that the affect I had on her husband was amazing. Ever since he talked with me, He has become much less reserved and concerned and was gradually becoming "his own self" again, and that she too felt full of energy and hope, like she has not felt for a long time.
Now, 2 years later, I recently saw this patient again. He was in remission and fully back to his voluntary activities. "I am so glad you are back, I will never forget this discussion I had with you" he said to me when I returned to work.

How disappointing for you - - I'm beginning to think teaching hospitals are 'teaching bad medicine'.

I am very sorry for what you experienced today - - and very outraged that that Doctor has given his students the impression that this is an acceptable way to handle cases that may be more difficult (ie. cases that will take too much time and effort) to dx.

Oh, their answers are amazing aren't they?

I remember how I "admired" my first neurologist. I told him that I had difficulty doing consultation rounds on the medical floors, because I could hardly walk, talk or breath, and had to rest between each patient to the next.

and his answer was- it's the same for me.

and I thought- oh my god, this guy is so ill, and look how stoic he is, even though he just came from rounds hardly able to talk and breath he is here in the clinic just for me, and looking at him there is no way you could guess he has such problems at all. I should really be ashamed of myself to complain like that.

needless to say that a few weeks later, after calling him a few times, as my condition gradually became worse (and getting a similar kind of response), I was in the ICU with a myasthenic crisis. fortunately, mostly under the care of pulmonologists and hematologists and not neurologists. Looking back this was the first and last time I received excellent medical care that basically saved my life.

From then on, I had to gradually become an MG expert in order to take care of myself. and get used to my colleagues telling me that its not good for me to be my own physician and I should trust someone else to take care of me.

And realize that every time I follow their overall reasonable advice, I have to deal not only with my illness, but with all the rest.

eg-when I told another neurologist a few years later, that as much as I want, I can't work any more, and trying to explain to him how I felt I said- look, after I see two patients, I feel that I am about to die. his excellent recommendation was-in that case just see two patients and die. I have to admit that as much as I love my work and my patients, I decided that this was too much to die for them, so after thinking it over, I decided not to take his advice.

Wow. I can so relate to the eggs in the basket and the stupid doctor experience. I think maybe we ought to be staying away from the UC's!! My experience at UC Davis is with a resident and SHE has decided that she is leaning towards friggen Chronic Fatigue!!!! OMG..... ****** me off I can tell you that! I told her I would have no problem with that diagnosis if I had the SYMPTOMS of it!!!!

DO NOT let that doctor bring you down. You have a stinking BIOPSY to back you up! Did he not even take that into account!??????

OMG. Reminds me of my daughter. She was diagnosed with insulin resistance at 13. We had all been 'chubby' so we went on Weight Watchers. At one point, when we starting counting points for her, I noticed that the LESS she ate, and the MOER active she became, the more weight she GAINED! ThInsulin resistance is when your body THINKS it makes no insulin so it over produces it. A normal level would be 2 - 10. HER levels were 45. As a result, the body thinks it's starving and so produces more glucose which turns to fat, then the body makes more insulin, which causes more glucose, and more fat.... and on and on and on. THEN when she dieted and worked out more, her body REALLY freaked out. Well, we went to the pediatric endocrinologist who told her (at THIRTEEN YEARS OLD mind you) that the REASON she was insulin resistant was because she was FAT and that SHE needed to be more active. OMG I was ******. Her endo is now a leading IR specialist and SHE is wonderful. That other doc...... man...... I never went back.

Hi - thanks for the words. that was exactly one of my questions to him...if i don't have MG that would make sense, but what about a CMS. how does he explain the muscle biopsy that states over population of my nuromusclar junctions and that the analyst believes it supports a congenital myasthenic syndrome. and this is what he said...get this..." i know Dr. Bla bla and he's the kind of guys that if he's told it has to be something then he tries to make it fit in the box. he was just trying to be nice...what he saw could be normal for a woman your age."

==btw let me state my age is 33. i look like maybe i'm 25. infact i'm gonna post a picture from a good day, so you can see how "old" i look...lol...see below. u can still tell a little bit that my left eye is smaller/droppy compared with my right; but i try to over compensate by tilting my head and putting my right side towards the camera==

i almost lost it at that point i felt so shut down and couldn't believe he would talk down his own collegue like that...i mean really does he think this analyst spent his life getting his phd specializing in neuromuscular pathology and then spending the entirity of his working life gives "drive thru" results. hi Dr. bla bla i'd like to order a side of MG, can you make that work...WTF...that doctor was so arrogant I don't even know how there was any space in the rest of that room with his big head. so he said, i am going to request to see the biopsy myself and will let you know what i think!

please as of today, i am feeling much better about the situation and i don't care what he thinks. he's full of himself and has no regard for the practice of medicine or patience.

I know exactly what you're talking about my family has similar genetics we look younger and oddly enough we still look "healthy" when we're sick. my mom had breast cancer and was going through chemo and everything and people were complementing her on how good she looked-and she did, she always had a smile on her face and was positively glowing (she's in remission). my grandfather went in for a heart transplant...a heart transplant mind you...and when he came out he looked like a greek good...there was no sign of weakness or that his body underwent a major surgery. it's remarkable.

i made an appointment with my therapist yesterday afternoon to talk with her and she has the same perspective as all of us have here. her and my psychiatrist are going to document my "emotional status" and have it added to my neurologists file, so we don't keep running into the lazy dr.'s answer of depression. i even asked her: do i have major depression and don't know it? like is that possible? she explained to me that i do not meet or present any of the clinical symptoms of major depression. i have suffered from major depression my entire life until about 30, so i think i can recognize when i'm not depressed. so i was glad to hear i am on track with the understanding of myself...lol...and am very glad they are going to provide documentation to my neurologist.

i know right, that was the worst part!

the dr basically said he didn't have faith in that persons analysis of the muscle and wanted to look at himself.

i'm 33.

oh and one other thing that doesn't make sense to me and i'm going to talk to my neurologist on the 25th about...if i don't have any form of MG or CMS then why is that i take 180mg of Mestinon and have no side effects. if i didn't have something going on (i.e. i was "just" depressed) then i would be so ill from the medication it would rediculous.

nothing adds up from that doctors diagnosis. i can honestly say that i am oopen to the possiblity that i don't have MG, that would be wonderful, but if that's they case then i want him to prove it to me. which of course he can't cuz he's talking out of his buns. so i'll move on...neeeexxxxttt!

You are stealing a page from my life story. You even have the same doctor's line, well one of them. Plus, you are writing my lines.

With that said, I have had three doctors say I have MG, and I have two doctors saying I do not; that just proves to you that medicine is an art, not a science, when it comes to MG.


Never can I get one of the naysayers to give me an answer to what I have. They will refill my Mestinon, monitor my enlarge thymus, but they will not SAY I have MG, even though one of the naysayer diagnosed me as having MG on my medical record. Doesn't make sense, I know.

That's okay. I really don't care about a diagnosis of MG, since the Mestinon is somewhat working for me. What I really want to know is whether or not I should have my thymus removed. If you start talking about that, the doctors start talking in circles. It's amazing.

Well, in March I will go to the MG clinic, and I will see if I can get an unbiased opinion.

By the way, Mvoyvich you appear to live in California. You can go to the MG clinic in Long Beach to get evaluated for free, but you'll need your medical records. Otherwise, you have to come back with them or pay to have them do the testing.

I will be interested in hearing how the neuros handle the support from your therapist/shrinks. I am in a bind in that area or I would have done that. My former therapist is retired and the shrink who knew me well has this odd postion about not going back in on my case.

My current chronic illness thereapist knows him somewhat and I asked if this was reasonable and he said it is just the way he is. It was kind of a 'too close' relationship with this shrink. A fellow shrink went to trial for a death here in town and he had his own nervous breakdown and spent more time telling me about his feelings! So many patients so few good docs!

Annie59