Aa
Another crazy consult to add to the list.
I apologise in advance for anyone who cares to read this rant!!!!
Just had my consult with the ophth/neuro. This was the most stressful consult that I have ever undertaken.
I approached this visit as another neurological view of my symptoms. How wrong was I. The doctor's assistant did the prep stuff for my eye in readyness for my consult. The doctor came in and the first thing he did was announce that I didn't have ON as he had never heard of anyone AGED SIXTY having ON. In retrospect I wished I had asked him to let his colleagues know this and it would have saved both of us some time and me $250. He then took my scans into another room and returned saying that I didn't have MS either as I didn't have enough lesions.
At no time did he ask about any of my symptoms. He got really agressive when asking about the blindness incident and he kept flashing his pissy little laser beam to charts on the wall which I could not see, as I had had the eye drops. He asked me why I didn't look in the mirror when I lost my vision to see what my eye was doing. Well, actually, when I went blind at work one day........I was feeling a little stressed about it and never thought for a moment to go see what my eye was doing.......um come to think about it .....................I WAS BLIND AT THE TIME you idiot.
He then said it was an ischaemic episode (my MRI says lesions not of an ischaemic nature) and told me that I should be getting a MRA done. I had to tell him that the MRA was done and the results were in the folder with my MRIs........he said.......oh yeah....did I see them?.....yes I must have!
When I brought up about the violent myoclonic jerking and spasms he grabbed my EEG report (see other post) and kept hitting the page with his pen and saying.......did you read this at all.......it says here ......NO EPILEPTIFORM ACTIVITY! OK.....I'm not stupid......I see that! So whats making me almost kick my husband out of bed each night?
I then ventured (I should say.... dared) to ask if the EEG showed a left frontal focus and I am having right sided facial and eye problems, could this mean that one of my lesions was causing this. He then said NO! Impossible!
I had to then say, with the last bit of dignity I had left, that I am only a lay person and I thought that this was a reasonable question to ask. He then backed off a little and told me that I had no lesions of consequence affecting my face or eye.
I assumed by then that the consult was over. As I was gathering my scans and stuff he said .......so you should be one happy woman! I was so p.....d off with him that I almost turned and left without answering him. I ended up telling him that I gained almost nothing from the consultation and he was not concerned about any of my other symptoms which I thought he would have wanted to know about. He told me that the referring doctor had asked about ON and he had given me his opinion!!!!!!
So.......scratched him off my list!
I think I have also decided, like the other lady who I read about (sorry I forgot your name) to forget about getting a diagnosis of any sort. Nothing will change for me with a diagnosis so I should just save my money.
Did I get a raw deal?
P
Best Answer
Thanks for taking time to comment. I felt that maybe I was being too 'touchy' with this doctor but on further reading here, I now know that we really do not need to have these people in our lives. I would not have a friend talk to me in this manner or ridicule me when I was feeling low. The funny part was that when I arrived he had a room full of patients so it's obvious that someone likes to be treated this way....or maybe they were all 'first' visits.
Anyway, thanks again for commenting......I appreciate the concern that all you guys have for each other.
Regards P
Anyway, thanks again for commenting......I appreciate the concern that all you guys have for each other.
Regards P
no ON after 60? what boat did he fall out of and absorb too much water on the brain???
I am sorry you had this experience. Sounds like this,guy specialized in being a rude idiot!
The jerks are falling off trees like apples. I think we should start picking them up and throwing them back!!! This is CRAZY!!! I seriously think if I had that kinda of treatment I'd make a complaint --- Pam and Lisa's too!
As for your tests, it sounds like they are similar to mine - not blatently abnormal but there are irregularities. I just had a spinal tap as my MSologist stated this should rule out some concerns (cancer) and be the fastest route to diagnosis in absence of obvious (specific) MRI findings. I don't have dawsons fingers but do appear to have some dirty white matter and a non-specific lesion in my right periventricular area (which is not specific enough). Have they mentioned a spinal tap?
I'm sorry you were treated so poorly. :(
Thoughtfully,
~Barb
As for your tests, it sounds like they are similar to mine - not blatently abnormal but there are irregularities. I just had a spinal tap as my MSologist stated this should rule out some concerns (cancer) and be the fastest route to diagnosis in absence of obvious (specific) MRI findings. I don't have dawsons fingers but do appear to have some dirty white matter and a non-specific lesion in my right periventricular area (which is not specific enough). Have they mentioned a spinal tap?
I'm sorry you were treated so poorly. :(
Thoughtfully,
~Barb
The thing that gets me is you don't even need a Dx to do pulsed oral steroids, which according to the MS Society seem to be as effective as IV infusion for many people. Prednisone or Prozac? More people have died using prozac; we have decades of data on prednisone. Some asthmatics take it their entire lives...so what's the big deal. The Neurobots shake their heads and alude to dire side effects, but the literature is pretty clear that in most people, prednisone (or solumedrol) is tolerated better, and is SAFER than prozac.
I had one Neurobot tell me on the phone that I was "just mad because she wouldn't give me the Dx I wanted." Who wants MS? Any takers? Can I sell mine on eBay? Is MS "trending" now? I told her I didn't care if she called it Fred...I just need to feel better. The woman actually hung up on me!
Fast forward a couple weeks, and some new test results come in, and this woman calls my referring Neurobot (Neurobot #1) in a full-on panic, advising I be admitted to hospital immediately for IV infusion, and that I begin taking Copaxone. Neurobot 1 had referred me to this "specialist", who was frantic that I start treatment NOW. But Neurobot 1 didn't feel it was necessary...to follow the recommendation of the person she referred me to?!!!!!!!!!!!!
Neurobot 1's reasoning? "I'm an epilepsy specialist." I don't know enough about this. Yet when I query Neurobot 1 about the sudden appearance of "degenerative disc disease" she states it couldn't possibly be causing my symptoms. But I thought you were an epilepsy specialist? I have cerebellar herniation of 6mm, and all the attendent Sx. The herniation is so obvious that my neighbor could see it. But according to Neurobot #1, this is a normal anatomical variation. (Not!)
It is complete insanity. It's perverse. They should all have to spend a month in our shoes. It should be legal to kick jerk Neurobots in the knees.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR. (insert string of expletives here.)
I'm feelin' ya, P. Don't kow what else to say, 'cept the truth's gotta come out eventually.
I had one Neurobot tell me on the phone that I was "just mad because she wouldn't give me the Dx I wanted." Who wants MS? Any takers? Can I sell mine on eBay? Is MS "trending" now? I told her I didn't care if she called it Fred...I just need to feel better. The woman actually hung up on me!
Fast forward a couple weeks, and some new test results come in, and this woman calls my referring Neurobot (Neurobot #1) in a full-on panic, advising I be admitted to hospital immediately for IV infusion, and that I begin taking Copaxone. Neurobot 1 had referred me to this "specialist", who was frantic that I start treatment NOW. But Neurobot 1 didn't feel it was necessary...to follow the recommendation of the person she referred me to?!!!!!!!!!!!!
Neurobot 1's reasoning? "I'm an epilepsy specialist." I don't know enough about this. Yet when I query Neurobot 1 about the sudden appearance of "degenerative disc disease" she states it couldn't possibly be causing my symptoms. But I thought you were an epilepsy specialist? I have cerebellar herniation of 6mm, and all the attendent Sx. The herniation is so obvious that my neighbor could see it. But according to Neurobot #1, this is a normal anatomical variation. (Not!)
It is complete insanity. It's perverse. They should all have to spend a month in our shoes. It should be legal to kick jerk Neurobots in the knees.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR. (insert string of expletives here.)
I'm feelin' ya, P. Don't kow what else to say, 'cept the truth's gotta come out eventually.
What an absolute pompous a*&hole! How can they just dismiss a person like that - Sometimes I just want to shake them and say hello I am here for a reason - tell me what the heck is wrong with me!
It took me four orthos and three years to find one - a woman! who finally said hey this is a neuro issue lets go there! Now I have started down this lovely journey to find out why I cannot walk without assistance, have no coordinaition or balance and fall all the time!
ARGH! I hope your neuro is not as dismissive. I agree with Lisa - we all just decided to say hey we have these sx's what you think - and pulled them out of thin air or off a website!~
Hang in there!
Tracy
It took me four orthos and three years to find one - a woman! who finally said hey this is a neuro issue lets go there! Now I have started down this lovely journey to find out why I cannot walk without assistance, have no coordinaition or balance and fall all the time!
ARGH! I hope your neuro is not as dismissive. I agree with Lisa - we all just decided to say hey we have these sx's what you think - and pulled them out of thin air or off a website!~
Hang in there!
Tracy
Thanks for taking the time to comment. To think that I was quite excited to be seeing this guy.....I was sure that I would get a full neuro examination.
He knows nothing of my paraesthesias, cognitive problems (probably why I couldn't remember your name) my bowel problems and my balance and walking problems. He obviously didn't care......
I have one visit next week with my neurologist and then I'm over it all. I'm sure that when the doctors see my degenerative disc disease they blame it for everything. The best bet for me is to treat the symptoms and my general practitioner could do that for me.
regards P
He knows nothing of my paraesthesias, cognitive problems (probably why I couldn't remember your name) my bowel problems and my balance and walking problems. He obviously didn't care......
I have one visit next week with my neurologist and then I'm over it all. I'm sure that when the doctors see my degenerative disc disease they blame it for everything. The best bet for me is to treat the symptoms and my general practitioner could do that for me.
regards P
OMG,, what is wrong with these idiot neuros. !!!!!!!!!!!!!!!!! I just wrote a post about pretty much the same thing as you. I feel for you!!
Hang in there, thank God we are all here for eachother!!!!
Pam
Hang in there, thank God we are all here for eachother!!!!
Pam
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Yes, isn't it amazing how we excite ourselves prior to a specialist's visit and say to ourselves, "This is it, I'm going to get somewhere and have answers" only to leave the office feeling bereft, isolated, and a swift kicked in the back seat of our pants only to be sent on our merry way no further than what we were before we got there.
Oh the joys of having our symptoms being discounted as if we made them up. It's like a purposeful enjoyment to lash emotional masochism with medical jargon.
Yes, we are infinitely in search of various specialists to spend copious amounts of money that we don't actually have to spare and readily give our valued time to be told what we are experiencing is of the mind or discount viable tests (negative or positive) without any further explanations due to our "age". How wonderful can this experience be?
You know very damn well you got a raw deal in the way and/or manner in which he treated you. Not professional at all.
And yet, I will encourage you too, to move onward knowing there is "hope" out there and that there are medical professionals (specialists or not) who will do right by you as you are deserving as a consumer and as a human being to receive competent and compassionate care.
Hang in there P.
Lisa