denisa 11/12/14
Last reply 3 years ago
Evasive and irritated neurologist

Hi everyone!

I was just wondering how is the relationship you have with your neurologists? How caring / understanding / approachable are they?

I perfectly understand that in a teaching hospital you get very bust as a doctor, especially if you are head of the MS commity, but I can’t understand when she acts expeditive, as if she has more important things to do, as I’m nagging her with my questions and need of proper advice from a qualified specialist.

I had my LP on the 20th of November. They said the results will come up in about 10 days and that I will need to come and discuss them. After 11 days I messaged the resident dr. that is in charge of me, and she said that my neurologist hasn’t got the results yet, and that they will let me know when they do.

Today, I once again messaged the resident and asked if there is any news. I think asking once a week since the last 10 days since the puncture is not being nagging. It’s my right to know, or be told what is the next step. She called me and said that my neuro doesn’t have anyting to say to me now, but she is expecting me on the 19th, next week, to talk about some things.

After the call I was laughing by myself, thinking how ridiculous this situation is: I want to know only if my results came in, and she tells me that they need to talk about “some things”. Should I expect ta chat about mistletoe or maybe reindeer? Her answer just left me speechless, what could I have said more, without feeling like I’m taking all of her time?

I am curious to know your experiences with these people who, by being doctors, should not think that they are superior beings that no mortal pacient can disturb.

A lovely day to you all!

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stumbler
3 years ago

The wheels of bureaucracy do seem to move very slowly. And that’s just from experience of the UK, but there can be problems/frustrations in other countries too.

There’s an obvious reason why we’re called patients.

But, you do have to be assertive, as long as you remain polite. 😉


tiggermum
3 years ago

My relationship with my Neurologist isnt much better. Again a teaching hospital, but he never knows my symptoms when I get there; he has to read my notes whilst I am there. He has the bedside manner of a slug – in fact that is insulting the slug!

I had to push for another MRI (2 years DX) and have been told “no significant change” but would have felt better with “no change”. I have to wait until 14.1.15 to talk to him. Every time I phone I have to wait two days for a return call from the MS nurse. Then she has to go and ask the Neuro and come back to me – usually up to a week later.

I know too that they are all busy but they need to take account of our feelings. At the time of our calls, or visits, there should be no one more important to them than us.

I do hope you get “some things” sorted. Keep smiling. Merry Christmas


denisa
3 years ago

@stumbler – i do my best in being polite. Sometimes I even feel ashamed of asking certain things, as I am not allowed to ask, only to listen. That is the feeling they leave me with. Although this hasn’t happened with all the doctors I went to. Will ask for my proper treatment… politely! :))

@tiggermum – you are one funny person. I can totaly relate to your situation. Exactly! They should at least pretend that we are the most important person in the room when we’re there asking for help. I respect their years of learning and practice, but they too should have respect on us as human beings that worry and need to get things feeling ok. They chose this profession, so don’t make me feel bad asking you questions. It’s not like I get bored and come to the hospital just for fun! :))

A Merry Christmas to you too, and all the best wishes!


stumbler
3 years ago

@denisa , we have to be master of our own destiny, so if we don’t ask we might not get told.

Have a great Xmas.


mendozaj72
3 years ago

Hello,
Being patient and polite can go so far. I would never put up with a doctor who didn’t seem they had time or didn’t make me feel like they cared enough. Sometimes seeking a new doctor is worth it.


cameron
3 years ago

Very busy but always have the time to collect their salary.


graham100
3 years ago

My one normally chats about the new BMW. As I was in motor trade, thinks I may be interested. Then says see you in 6 months, we are just a number, that gives them a job. Actually all the things my ms nurse and nuro used to say to me that sounded rubbish, as time goes by actually starts to make sense!! Hope you get the answers.


denisa
3 years ago

I understand that we as patients may have more needs than your average person, and that might be stressful for neurologists, as they see the same thing oooover and oooover again. But hey! It doesn’t mean you have to treat the patients all the same just because if you get involved with each case you lose your objectivity, or your sanity, for that matter.

As a doctor and a human being, you chose this career because you LOVE helping people and it pays really good. When you only focus only on “what’s in it for me? I am dead bust already!”, nasty things like this happen. As I empathize with them, I’m just thinking it’s normal they do the same. @cameron, they are human after all, and as we all, they need money to live their lives, but they should stop with the “i know best, you are just naive” approachable.

@graham100 – i agree with the fact that eventually what they say begins to make sense. My neuro and I agreed on so many issues. The thing that will bug me untill I see it gone will be the impersonal way they treat you. As an Ms specialist, she must take into account that every patient is different and needs to be heard and understood, as he or she knows him or herself the best, and could help the doctor in figuring out next steps and treatment.

@mendozasj72 – agree, because after all, that’s why we go to the doctor, to get help from someone who cares about the condition we are in. Just listening to what I have to tell would be fiiine! And some question answering. The doctors at the Neurology Institute where I was first admitted for my optic neuritis did just that. They at least seem to care, and there were residents who really listened 😀

@stumbler – you’re right. A Merry X-mas to you too!


andypearl
3 years ago

Consultants and Doctors are here to serve us. Keeping our quality of life as high as possible!
Unfortunately, they are constrained by the powers of Drug Companies so limited in what help they can actually give medication wise. There is also NICE, which weighs up the cots of any medication available!
Merry Christmas to all.


naim
3 years ago

totally agree with this post! my neurologist is just so rushed all the time.
i think they definitley have a deficiency as well lol
my approach is rather holistic which requires a ton of questions.
i sometimes think they just evasive and dont want to address anything minor.
its like lets see MRI scan- lesions decreased – therfore must mean injections are working – go live your life now. sigh
and im like erm but what should i eat or drink or or or or :/


denisa
3 years ago

Hello all!

How are you today? Hopefully good! I’m pissed! Badly!

Today I had the appointment with my neurologist. She asked me to come at nine o’clock in the morning as she wanted to talk to me about “some things”. So off I went! Nine a.m. sharp I was at the clinic. Went in to let her know I came and she told me that we have to wait for someone, and that I need to take a seat and wait, as she will let me know when it’s time. Uooookey! All good, right?

Three hours later, I was still waiting with no INFO from her. At about 12 am, she asked me to come with her, told me as we were walking that my LCR analysis is positive for oligoclonal bands, and that my DMD is Gonna be Rebif. Imagine being hungry for 3 hours, dizzy and tried of waiting, and she comes up with this. Ok, you might say. Yay! You have treatment. Not quite OK, because prior to this, she did not tell me anyting about treatment options, the disease itself and all the inițial detalils one should give a MS patient when he or she is at the beginning of the disease. All that. I know about MS, DMD’s and disease detalils I got from reasearching continuously for the last 6 months. From her I got Close to nothing. Ok, back to the story! I saved the best for last.

As we were walking down the hall, she entered with me in a room where 7 other patients and 2 doctors were sharing out Rebif kits. I still didn’t know why we were there for. My neuro left me there and told me I will see a presentation of the drug, and she left. Oooouukeeyyy again!

One of the ladies there gave me a written consent that I had to sign in order to… ENTER A CLINICAL STUDY! What thaaaaaa? Ok, I am almost happy that I have a treatment given. NOT! The feeling I got was as if they were forcing me to take Rebif or go home. Nobody told me anyting about the drug, it’s side effects and all that. They assumed as it is free Medicine, that I will take it and be satisfied, as many people wait ages for their treatment. Ok, agree that it was a chance of starting treatment today, but no thank you!

Nobody asked for my opinion. They decided for me. “OH, we have a new clinical STUDY. We think that you will benefit from it. OH, you want Copaxone? Sorry, the STUDY is with Rebif!”

I did not sign anyting and refused the medicine. You might think I went Mad, and I did. Mad with rage. Mad that I was treated like cattle. Mad that they did not even try to ask me first. To know my opinion. I am crazy mad!! It’s like I was a mule and I had a carrot hanging in front of me: “looook! Medicine! OH… You don’t want it? Fine with us. Then you have to wait some more, as there are no funds this year!”.

I want to have options, to be able to decide for me how I want to deal with this condition. Not to be forced into a decision. God I’m mad!!!


graham100
3 years ago

Hi @denisa. Good for you. Why do they all seem to push rebif, is there a back hander there somewear I wonder? After 4 months and feeling much worse I took myself off rebif, now on copaxon. There seems to be a lot of bad reports iv read about it, so why keep pushing forward?? Makes you wonder.


stumbler
3 years ago

@denisa , we can only really do things that we’re comfortable, or are made comfortable, doing.

It’s hard to comment further as I’m not aware how your healthcare is provided. But, you should never get “railroaded” down a direction without prior discussion.

Good luck and merry Xmas. xxx


melissa-g
3 years ago

I’ve yet to meet a neurologist who wasn’t dismissive and condescending.. I’m sure there are some out there, I just haven’t come across one yet!


denisa
3 years ago

@stumbler – there is a national programme for patients with MS. In general, a person living here has a medical insurance that is being payed monthly via taxes applied to your salary. That means that for your contribution to the național healthcare system, you are allowed a certain number of prepayed analysis and certain medicine, ex. your routine blood analysis. In the prepayed group, you have the MS treatments. Due to the fact that the state can sustain via government budget only a limited number of MS treatments, many msers are left without treatment untill the list creares a spot, or in case there is a suplimentation of the budget. As we speak, the places fir receiving treatment this year are already full, the next chance to get treatment will be in feb-march 2015. My neuro tells me there might be a few extra spots this month, although I doubt that.

Besides the state programme, you can try getting your medicine via private funding or paying for it. The prices are way high, ex. Copaxone costs about 670 euros a month. Imagine the costs for a year of treatment. So, that being said, I hope I cleared up the picture for you, and Indeed, no one should be forced in taking a decision without being informed.

I wish you a Merry X-mas too! And to all the nice people here.


denisa
3 years ago

@melissa.g – i might have found one (or two), but they are still training. The residents at the Neurology Institute in Bucharest. The ones I’ve met were nice people and took time in explaining things to me.

Dunno, maybe most neurologists are sick and tried of the same questions and issues. Maybe they have to put up with nagging / stupid people. They could be overworked. Who knows? But that is no reason for being condescending. They are working in healthCARE! More caring and less dismissal.

Happy Holidays and Merry X.mas to you to! 🙂


naim
3 years ago

i think its best to keep your first neurologist that diagnosed you for continuity
but keep getting second opinions every year to ensure you on the right track.
as a safety measure. thats what im doing. i did that this year and next year im going to do the same.
i like getting new opinions.it keeps things safe and knowledge on MS from a different neurologist on your disgnosis and treatment and MRI’s keeps you less complacent.
Iv only been diagnosed since MAY 2013 so im still finding myself with regard to things as well.
#KeepPositive


jay23
3 years ago

@denisa I am so sorry you have to deal with such a nasty neurologist! I would be livid if that happened to me! You were very patient. I hope your neurologist changes their attitude or you find a better one! I had good experiences with mine right up until my actual diagnosis. She was late, 30 minutes late NOT 3 hours, and they gave me an intern to start with who knew less about MS than I did. Once she was done with me the neurologist came in and in 30 seconds or less gave me four medication options. I sat there after she left and thought…”soooooo I have MS?”. I actually had to ask the MS nurse if that was a diagnosis!!! It was really disappointing.


miskovic75
3 years ago

Hello @denisa, wow 🙁 I did know that things are handled ‘differently’ in Romania, but this sort of waiting-list is an unpleasant surprise. I have started taking the official (expensive, but fully covered) Tecfidera just before this Christmas. But, I have started taking DiMethylFumarate (DMF) in January 2013 – buying it from a pharmacy in Vienna on my own, monthly cost below 100 EUR. DMF is relatively easy to manufacture, there are several pharmacies all over Europe selling it (and often producing it on their own).
According to a study (http://www.dmsg.de/multiple-sklerose-news/index.php?kategorie=forschung&anr=5003) this substance is effective when something called “HCA2-Receptor” is present at the patient. So it is a rather simple picture: “effective/zero-effect”. Myself – I felt first improvement after 3-4 months. Definitely worth the investment..

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