Rude! Rude! Rude!

[supermum_ms]

Hi There,

I just have to tell someone because i can't quite believe this just happened, i'm gob smacked!

I'm happily reading todays posts when the phone rings, its the hospital requesting i come in at 1pm not 10am tomorrow for the scheduled LP. I explained that i thought i had to confirm the appointment or i didn't have any appointment, which is how I interpreted the letter i'd received. She says she's not sure what to do so she just needs to speak to the person who made the booking, i'm left on hold for a few minutes and then this lady states her name.

I'm waiting for her to say something, she's waiting for me to say something so its rather uncomfortable, realising i've just been put through to this woman and she has no idea why, i ask if the other lady explained anything to her, which she says NO. I state, gee i dont know what to say, i thought she was going to speak to you not me, this is so odd its funny because i dont know why i've been put through to you.

She asks my name, tells me i have an appt tomorrow for the LP, so I again explain that i hadn't confirmed the appt and had asumed from the wording of the letter that i would only get the appt if i confirmed if i didn't it would not be going ahead. I was stumbling a bit during this because i was totally unprepared for the first call and then being put through to someone for what i wasnt sure, i am assuming she was suppose to help with the mix up.

Well this women started having a go at me, aggressively told me what she thought of me for not confirming and wasting everyones time, she wrote the letter and there was no ambiguity as far as she was concerned. Telling me she didn't appreciate me saying it was funny that i was cancelling the appointment at the last minute, i assure you at no time did i even imply cancelling an appointment was funny. She was angry, rude and even when i begged yes begged her to stop because i was starting to cry because i really didnt understand why she was talking to me that way, she continued to barrate me. Her last word was, i'm putting you through to neurology so they can work out if you need to even bother having an LP, if you do make an appointment and have the desentcy to confirm!!!! And she was gone.

I'm still in shock, fighting back the tears and trying to make sense of what just happened when one of the receptionists from neurology answers, I then had to explain what just happened which was really hard to do concidering i didn't understand any of it. Poor girl had to try and make sense of it and she couldn't work it out either, all she could do was give me the number of the lady who handles the LP bookings, as i told her there wouldn't be much point talking to the same women who just abused me. I asked for the complaints department.

How dare this pencil pusher speak to any one like that, its so unlike me to get upset but in seconds i was in tears and very confused. Is it wrong of me to assume that someone who requires an LP could be facing a serious dx or already have something terribly wrong with them, and what just happened was totally outrageous and uncaring?

I told the neuro girl i would never trust the hospital to care enough about me and i would not now be able to go through an LP or anything else at that hospital when so far i feel like my experience mimics an episode of dumber and dumber. The poor girl was constantly appologising and she shouldn't have ever been put in that position to feel she had to.

Rant over sorry!

JJ

[Lulu54]

Supermum,
To begin,  I had absolutely no problems with my LP.  I would do it again if my same doctor did it.  He tells me in all that he has done (and he has lost track of how many, we joked about that too!) he has NEVER had a patient need to come back for a blood patch.  Technique is everything - and the needle size is important too.

I recently read on the mscare.org site that the number is one in seven lp's results in unusual discomfort and headache for the patient.  That is a pretty high number, but I don't think the author gave a reference for how/where that number was derived.

There are enough people like WAF who have complications with an LP that you will find it is being reconsidered as even being a part of the MS tests.  It does not prove you have MS, and it will not prove you don't have MS.  It is one more piece of lab evidence to put in your files for reference and collaboration, but won't ultimately give you a dx.

It is great that this new neuro reached out to you, and it sounds like she may be a keeper.  Complaining does pay off, if only sometimes in our own self-satisfaction, but also in examples  like this when you might impact a new doctor's thinking for their entire career.

good going girl!
Lulu

[MsWobbles]

JJ,

Two things:  First, MS and ALS can have very similar symptoms and are sometimes misdiagnosed.  ALS is the most God-forsaken disease you can get (in my opinion).  If you already have MS lesions on your MRI, you don't have ALS (because their MRIs are clean).  Think positive - think MS!!  Also, does heat affect your symptoms?  If so, hurray!  That seems to be specific to MS!

Second, the rude scheduler at the hospital did you a tremendous favor!!  Skip the spinal tap!!  There are plenty of other more benign routes to an MS diagnosis.  Sure you could have an uneventful spinal tap experience, but you could also have the worst experience of your life with spinal tap - like I did!!  

People have been diagnosed with MS even though they had negative spinal taps.  Yes, those taps have helped some people (with positive taps) get diagnosed, but they have also made it harder for others to be finally diagnosed with MS because their taps were negative.

When you consider the risk/benefit ratio of spinal tap, it just ain't worth it!!

From one who regretfully has been there,

WAF    

[supermum_ms]

Hi,

Would you believe after all the fuss, a lady neurologist called me about re-sheduling the LP, concern being that i was not having the proceedure done because of what happened. We had a bit of a chat, she mainly listened, i told her about it and how the neuro i saw changed from being nice during my exam to dismissive and busy when my MRI didn't show what he seemed to expect, telling me i needed to see a psyc. His annoyance when i asked questions, and my interpretation was that he believed i was making it all up, a hypocondriac. i had been going through pure living hell for months and wanted and needed someone to tell me what was going on, not a pat on the head.

I told her that i didn't know why he scheduled the LP or the EEG when he made it quite clear that i was wasting his time, if he is thinking i have a psychological condition, which i told her i'd been cleared of or the other option he gave me was having dementia, why would i need the LP. We also discussed my problems being episodic without the gradual decline consistent with dementia and the rarety of dementia starting in your 30's.

The one thing she did say was that it apeared my situation was not clear or going to be simple to dx and it was probably going to take a while to get a conclusive dx (ya think) she agreed that dementia seemed unlikely, and was pleased i'd checked to see if i did have a psychological problem. She then did a pretty good job of convincing me to reschedule the LP, she did say it could well be negative but it would help with the exclusion of a lot of other things even if it was negative, ruling out MS was not the reason behind why she thought I needed it done. She said that in her mind a negative result was equally informative as a positive LP, it helps to narrow down posible causes.

So at the end of the day i learnt two things, saying you want the complaints department makes everyone be as nice as they should be and there is renewed hope in the training of the up and coming young neurologists at this teaching hospital, if this lady neurologist is again as nice and informative as she seems when i meet her and is qualified i might be asking if she'll take over my case.

It will take about a month before the LP, in truth i'm feeling like i could go the rest of my life with out another test, alas i'm out of my episode now and i know i'll change my mind the next time. i would like a time machine so i can go back and start this life of mine again. ho hum

Cheers...JJ

[supermum_ms]

ahhh, just checked out ALS, i probably should of looked it up first, it just came up when i went looking for understanding of the pseudobulbar affect, ignorance can make you seem an idiot sometimes. Just for the record i dont think i even come close to having something like ALS, unfortunately i cant remove that post. :-(

Cheers....JJ

[Erin0313]

JJ,

  What a nasty little beep that girl was! No one should ever be treated like that and people who are in need of these types of test should be treated even more gently.

I am glad that you are reporting her behavior. If we all took the time to that maybe there would be less nasty people in the healthcare world. If you don't have compassion then you shouldn't work with people at all and certainly not people with health problems.

Don't let her stop you from moving forward - she is not worth it - you are!!!

Hugs,
Erin :)

[Lulu54]

Hi JJ,
please table the thoughts about ALS for now - that is one disease you definitely don't want and most probably don't have.  It is also known here in the states as Lou Gehrig disease, because he was a famous baseball player who came down with ALS.  

You are not an ALS patient as best as I can tell.  

If you have been reading our health pages you already know that a dx of MS can take a painfully long time.  It is a diagnosis of elimination - the doctors have to take all sorts of mimics off the table before they can talk MS.

Hang in here with us and we'll take this journey with you until you get some answers.  

wishing you well,
Lulu

[supermum_ms]

Hi and thanks again for the support, if Lulu is on the money you'd of thought MS would be jumping up and down on my MRI, i seem to have a heck of a lot of sx for it not to be showing its self in an obvious way (MRI), its making me wonder if i do have MS or not, and how bad is it going to get before they work me out?

I looked at the health pages and it sounds like whats going on with me, i have also been experiencing bouts of intense anger, so bad i'm seething and struggling to contain the rage i'm feeling, i've been hiding out in my room a lot. I'm not use to feeling like that either, i've been confused about that too, its new for me, for years people have been asking if i ever get angry because i'm very calm, its all been a bit alarming because i dont recognise myself, still wondering if this is the new me.

I found this Dr's response when looking at the health pages: I dont know what ALS is though is it Lupus or in that family?

Hi, here is some quoted literature “About 75% of people experience "limb onset" ALS. In some of these cases, symptoms initially affect one of the legs, and patients experience awkwardness when walking or running or they notice that they are tripping or stumbling more often. Other limb onset patients first see the effects of the disease on a hand or arm as they experience difficulty with simple tasks requiring manual dexterity such as buttoning a shirt, writing, or turning a key in a lock.

Regardless of the part of the body first affected by the disease, muscle weakness and atrophy spread to other parts of the body as the disease progresses. Patients experience increasing difficulty moving, swallowing (dysphagia), and speaking or forming words (dysarthria). Symptoms of upper motor neuron involvement include tight and stiff muscles (spasticity) and exaggerated reflexes (hyperreflexia) including an overactive gag reflex. An abnormal reflex commonly called Babinski's sign (the large toe extends upward as the sole of the foot is stimulated) also indicates upper motor neuron damage.

Symptoms of lower motor neuron degeneration include muscle weakness and atrophy, muscle cramps, and fleeting twitches of muscles that can be seen under the skin (fasciculations). Around 15–45% of patients experience pseudobulbar affect, also known as "emotional lability", which consists of uncontrollable laughter, crying or smiling, attributable to degeneration of bulbar upper motor neurons resulting in exaggeration of motor expressions of emotion.

To be diagnosed with ALS, patients must have signs and symptoms of both upper and lower motor neuron damage that cannot be attributed to other causes”. Taken from website http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

As i said i dont know what ALS is but it sure has a lot of things like i have, i wonder how many things i have to get before i understand whats going on. This new me is going to take a bit of getting use to, i have a bit of affection for the old me, we've known each other for a long time. :-)

Cheers........JJ

[shermay]

You cannot allow anyone to speak to you in that manner, it's totally out of order.  You should report her asap.  To bring  you to tears like that is incredible, and should not be allowed.

What is she??  Just some jumped up office worker, who feels that she has the right to speak you like that.  I am so angry for you.

Get on her case, and rattle the old busy bodies cage.  Thats putting it conservatively:/

Debs xxx

[Lulu54]

JJ,
Take a look through our health pages or search this community for the posts on EMOTIONAL LABILITY,
the tears and inappropriate laughter all fit the symptoms of MS if those lesions are in the right spots.

Sorry, but I'm on the low fly at work trying to type this before my next project.  I'll write more later if no one else helps to fill in the blanks.

my best,
L

[supermum_ms]

oops, i cut out this bit. I totally intend to complain, i'm worried about the next person she does that too, I think its important to speak up when something is wrong, and i think she may do it to someone who cant laugh it off.  

[ROFL] if she was doing the LP i'd be leaking like a seive! But i'm not doing the LP through these guys, its hard to see why its been ordered when the twit of a neuro was saying i had senile dementia or psychological probs to explain why my body had been taken over by a seemingly very drunk body snatcher or as i've said before, Vergile from thunder birds.

Cheers.....JJ

[Lulu54]

Wow JJ! What a way to start the new week. I am aghast at how you were treated, but not really surprised.  We have heard too many horror stories of the mistreatment of already vulnerable patients by assorted members of the medical hierarchy.

Please take the time to report her behavior - that is the only way we can see this type of treatment curbed or stopped.

be well,
Lulu

[supermum_ms]

Hi and thanks for responding,

I sat wondering what the heck was wrong with me, i dont cry, i can even count the number on times i've cried over the last 5 years, on the one hand with fingers to spare. I did use to cry all the time, soft as butter but now i dont seem to cry anymore. I've no idea why i reacted with tears, i would usually go into my professional persona when dealing with unreasonable people, in my career i've dealt with a few very very nasty people but this time the tears where flowing and my brain wasnt catching on to why or what was happening. Both of those things are perplexing and i have to admit being a little concerned this being so out of charater for me, is this going to be the new me?

I've started to wonder if it might be a bit strange that i laugh so much, i was again laughing uncontrolably after i'd sent the post, i tend to laugh at things that others wouldnt find funny. I talked to my mum about it just before, she said she's been a bit worried about my laughing for a while, apparently my entire family have been talking about how odd it is that i laugh instead of cry. She kept on expecting me to cry during all the pallarva that i was dealing with (she says i was frightening to see during my last episode) but i just kept on laughing through it, is that really so odd?

Dont get me wrong, i'd rather be laughing than crying but seriously could i of only passed my psych test because i'm abnormally chirpy, gee that sounds really weird, hope someone gets what i'm trying to ask. I'm already laughing because i think life is reduculasly obsurd!

Anyway thanks :-)

Cheers.......JJ

[Tammy826]

Oh Good Grief!! If she hates her job that much ..why bother to show up for work & make everyone else she encounters miserable!! I think she needs to be forced into charm school!! nI understand that mabey she was having a bad day or whatever but thats no excuse to take it out on you or anyone else! I would write a written complaint against her & give it to the hospital. I'm sorry you were put through this!

[Janette2836]

JJ

First of all - I am sorry you were treated this way!  It is hard enough to know you are facing this test let alone being verbally abused by someone in this manner.  I agree with the above statements - make a formal complaint.  It was probably someone having a bad day & took it out on you but that is uncalled for!!!

The good news is that the same person will NOT be performing your LP.  Don't let her get in your way of a possible dx!  

[PastorDan]

Karen's right, JJ.  Not following through with the tests you should be having would give that unconscionably aggressive and bossy woman the satisfaction of knowing she'd messed up your life, and would probably confirm in her warped mind the absolutely total misconceptions of you that she's already dreamed up.

Having said that, besides getting the care you need, you should also follow through with your complaint.  Someone who treats sick people that way should be in a different career path.  Her superiors need to know how she abused her position and their patient.

[Karen99]

That's awful.  And yes, it is terribly rude.  That booking gal is way out of line.

My suggestion is to put it in writing and make a complaint.  She has probably already put something in writing about her perception of you, i.e. that you thought it was funny etc.  You stated the events very well in your post and you should write the complaint based upon your experience as you have written it here.

Her call caught you off guard and you were confused because you thought you had done exactly as you were instructed to.  For her to continue berating you when you asked her to stop when she brought you to tears is inexcusable.  I'd like to have a chat with the little winch myself!  She is callous and mean!  And needs to be put in her place.

All that said, your neuro wants you to have an LP?  Let the complaint department work this out for you and get your LP done.  Don't let this woman stand in your way of getting what you need.

Take care