My Neuro appt. on Monday

[Rena705]

I have a couple of questions in regards to my "new" neuro appt. on Monday.  Some may wonder why I have "new" in quotation marks and to make it short (not necessarily sweet) I had been seeing this female neuro for about 10 years until Feb. this year.  I had an attack of Paratrigeminal Neuralgia (PN) and needed help (steroids) fast but it was a Wednesday and she couldn't see me until Friday. Two choices go to my G.P. or go to spend an average of 12 hours in ER when I know what I need...chose to see G.P.  Couldn't get in to see my regular G.P. so saw her cohort...she panicked and called the university hospital and got an appointment with the neuro I had seen 14 years ago and whom had initially diagnosed me with MS 14 years ago.  I left him because I couldn't stand him and when I did go to see him and he diagnosed me with the PN he said he would treat me for this as long as I did not see any other doctors about this!  Well, what choice did I have, he was going to help me with this excrutiating pain I was in so I agreed.  I contacted my female neuro and told her I wasn't going to see her again as was requested by the idiot I have been seeing for the last 9 months.  WELL, my female neuro got her panties in a knot and insisted that an apology letter be written by my G.P. before she would see me again which was done.  Then she booked me an appointment for 5 months later and I am being treated as a brand new patient, which I can understand as this will enable her to glean as much info as possible from the past 9 months.

SO, I feel now that I am a bit more learned as to what MS is all about and what the tests are and the treatments required.  There are some new words for me though like the Babinski Response, the evoked response etc. and I am wondering if anyone out there outrightly asks their neuro to explain the results of these tests.  I have a positive MRI with numerous lesions on the brain which are typical for the demyleination of MS.  I don't imagine I will require an LP but I am thinking that she may want to do another MRI, but what other tests could she do.  It seems that usually when I have an in-office exam the results have been normal except for the last one which was the day after the vertical double vision cleared up and I had trouble walking toe to heel due to impaired equilibrium and a tremor on the right side.

I am also curious as to what causes our symptoms to magically disappear when we get to the dr.'s office?  I makes me so angry!  I am still having these little muscle spasms, in my fingers especially, but when I am tired they are all over my body.  I am still having trouble verbally, especially when I am tired, the words just won't come out or I stutter like the village idiot (bad comparison I know).  I went shopping yesterday (by myself!!) and after I had walked about 50 steps into the mall my legs started to get weak ALREADY and by the time I was done (I managed about 2 hours with a cart to push and the help of a cane) I could hardly put one foot in front of the other.  I was exhausted, couldn't talk much, couldn't walk much and fell asleep on the couch very quickly BUT I had a smile on my face because I did it by myself!.

I guess I don't really know what I want out of this post.  I am really concerned that this neuro will not put me on a disease modifying med.  When I was seeing her before she kept saying that I had to have three relapses before she would put me on one of the drugs.  My medicare plan will pay for these drugs with only a letter from the neurologist stating that I have MS and I have told her that before she wouldn't do it...she kept saying I have to have 3 relapses, blah, blah, blah.  I did ask my G.P. if she could refer me to a NEW neurologist and she stated that this one is the only one that she knows (Yeah right) so yes I have to see her.  I don't know if I should be going in as the simpering little patient or like a bull in a china shop insisting that she do something to help me!  

Any opinion would be very much appreciated as I have thought this through many times and have had 5 months to think about it and I am still very nervous about this appointment.

Thanks all,

Rena705

[Rena705]

Thank you so much Quix and I will look it up right away...you are a gem to do this for me and I truly do appreciate it!  Like I said before I will let you know what happens when I get back tomorrow afternoon!

Lots of hugs,

Rena705

[Quixotic1]

I found the "Consensus" Statement.  It's discussed on the Canadian MS Society website.  I was correct that that previously there was a requirement of so many attacks within such and such a time and it varied by province.  Here is the link to the discussion so you can see what you need to talk to the neuro about.  I doubt she'll listen.  Sounds like her ego is as big as a large cow, but if she continues to refuse you can probably complain to the MS Society and her superiors, citing this recommendation to treat earlier and more aggressively by the Consensus Group.

Okay?  Here is the best link I found.  And it is written for the lay person.

http://www.mssociety.ca/en/research/DMT991209.htm

Good luck, Quix

[Rena705]

First of all to Moki...thanks for your support!  I think that we in Alberta are having an even more difficult time with a shortage of drs because of the oil boom and people from all over Canada coming here looking for jobs.  I have a friend that is in human resources and she is hiring on average 7 people per day from Newfoundland, Nova Scotia and NewBrunswick to come here.  Of course they bring their families and so on an so on....

I also wonder about the drs that are going overseas on these junkets to help people over their for 6 months at a time?  I realize that they need drs. overseas but what happens to the people here???  I don't think that the government thinks things out at all do they?

Anyway, Moki...I hope that you are successful in finding some doctors for yourself...I know what you are saying and it is so frustrating when you are not feeling well that you should have to fight to find a doctor that will help you...I just wish that there was something I could do to help!  Best of luck to you honey!  I will be nice to the nice doctor just like my Mommy always said...if you can't say something nice, don't say anything at all...BUT if she tries to jerk me around, look out cause I have had enough of that and I need some meds!  I coached my hubby last night as to the words he should use if he feels the need to speak up, like call the meds disease modifying medications not MS drugs and clinically isolated syndrome etc.  I don't know if he will remember them but I am also worried that he will lose it in there as well.  He is feeling so frustrated right now!  I remember when we were in the last neuro's office and we were discussing the Paratrigeminal Neuralgia, he asked the neuro (as the neuro was pushing us out of his office), "excuse me, we are not finished here, I have a few more questions like, is this going to go away?".  The neuro responded with, "I don't know, she doesn't do anything normal" and with that he told us to have a nice day and left!  I had to hold him back for fear he would crack open the neuro's skull to see if there was anything inside! ha ha  Someone said that having a tooth pulled tomorrow morning before my neuro appointment may be a good thing cause it will put me in a fighting mood and they may have a point!  tee hee

ess...you are right, the U.S. doesn't have a monopoly on government stupidity!  I just wish that there was something that we could do to change things and I have no idea where to start and that makes it so frustrating doesn't it!

Hugs to you both,

Rena705

[essdipity]

Thanks, Moki. I guess the US doesn't have a monopoly on dumb decisions after all. It often seems that it does. I know that's not much consolation to you as you wait for even a decent GP to surface, but hang in there.

ess

[mokibear]

Just read a report that states that for the amount of physicians that we need to bring our numbers up and out of a shortage, we are over 900 short each year of graduates. I'm not sure how accurate that report is but it does explain why we are in such a pickle now.

Moki

[mokibear]

I believe it was in 1991 a report done by the deputy minister of health declared there was a surplus of physicians. The government in their so called wisdom (I use that term sarcastically) decided to start cutting funding to save money. Older doctors were encouraged to retire, foreign doctors were discouraged, and the numbers of accepted entrants into the medical field were cut. There was no in depth look at the need of doctors in the future and the impact of cutting these resources and how it would affect things later on. A lot of our doctors have gone to the United States for better pay and working conditions. A cap was put on the pay for the physicians here and even my own original GP had gone to the States.

In rural communities it is even worse now. Most young new doctors are either specializing or do not want to come to small areas as the work load is very high here. With the lack of doctors and specialists here, their work load is much higher than it would be in a bigger center.

I know that with the amount of time needed to graduate here and then still do residency adds to the time line of when these medical professionals are actually able to practise. The government still has not made it any easier for a foreign doctor to work here even though there is an obvious shortage.

There is probably more to this all, but it gives you an idea as to why we are having so many problems right now. I hope this helped.

Moki

[essdipity]

Why is there a shortage of medical specialists in Canada?  I read this over and over from our Canadian  members. Does your national health system provide a disincentive to doctors? And do they then practice elsewhere?

There are many maddening aspects to health care provision in the US, as everyone here knows for sure, but we don't have shortages, so don't often have the additional frustration of not even being able to find good primary care fairly immediately. There are also loads of neuros here--how good some are is something we discuss endlessly in this forum, but at least they exist. Getting an immediate appointment is highly unlikely, but it's also rare to have to wait several months.

I don't want to start a disussion of the relative merits of health care systems. That's way off-topic here. I just want to know to what the doctor shortage in Canada is attributed.

Thanks in advance.

ess

[mokibear]

Being Canadian myself I truly understand your frustration. It is our tax dollars paying these dolts and they seem to forget that. Yes there is a shortage of docs, but that does not excuse shoddy treatment from anyone. I too am having problems with now having to not only find a new neuro but a new gp. Even though my last MRI states that I have definetly got lesions and not UBOs my family doc is dismissing it as the MS clinic neuro says he doesn't think it is MS but can't say for sure. Other than the MRI he did no other testing.

The first appointment with this clinic was an ego fight between 2 neuro's. The head guy and a lady on a fellowship, I happened to get caught in the middle. The problem now is if I go anywhere, his report follows me. I just want to start somewhere fresh.

For the life of me right now, I can't remember where you can send it, but there is a place where you can file a grievance against any medical professional. I will try to find out when I'm feeling better. The problem here in Canada, is that these so called professionals are using this shortage as an excuse to get away with their lousy behaviours and treatment. They act as if they are God and figure we'll just sit there and take it.

As hard as it may be for now, you may have to be nice in your approach to your neuro but still remain firm in how you feel. I know Canada is more stringent in how they do diagnostic procedures and the such, but you are diagnosed and I see no reason for treatment to start. Keep at her for treatment and ask her how not getting treatment now would be beneficial. I would like to here her answer to that.

Taking your hubby with is a good idea as they do tend to be not as dismissive when a male is present. It is sad to say that, but it seems to be the way.


I will be praying for you Rena in the hopes that she will listen to you and get you started on something. Good luck tomorrow. Let us know how it went.

Hugs
Moki

[Rena705]

Thank you Quix for your response and your quote!  I agree totally and I am sure that you have seen from my previous posts that I believe in being proactive.  You are right in the fact that, yes I do make people angry and I am a pain in the patoot sometimes but darn it, it is their job!!!  If I had behaved in some of my jobs in healthcare the way some of these people do I am quite sure that I would be fired but there is such a shortage of workers, they put up with all sorts of garbage.  I think that all specialist should practice with a Mission Statement.  Obviously the code of ethics doesn't mean a whole lot so why not try it?

I appreciate that you are taking the time to look into that document for me and I am looking forward to seeing it(if you are able to find it).  If I don't hear from you before I go tomorrow I will let you know what happens.  I had my husband read what you said about taking someone who is assertive to the appointment with me and he is all there!  He is fed up with the whole thing and who can blame him?  He is getting an eye opener as to just how much work there is to getting ready for Christmas since he is doing most of what I normally do!  It's not going to hurt him one bit I say!  

Talk to you tomorrow!

Lots of Hugs!

Rena

[Quixotic1]

Taking the proactive stance always runs a risk of angering the people we need.  But, if the people we need are not acting on our behalf anyway, what's the difference?  Do you have an appeals process or an advocacy service or agency?  I have heard of such things in the UK.

I am reminded of a line from the song "The Seven Deadly Virtues" from the musical Camelot:

"It's not the earth the meek inherit.  It's the Dirt!"

No doc has the "right" to be anthing's patoot!  Arrogance seems to be very common in medical specialists with Neurologists right at the top.  One of the things that we can do is take others with us to our visits and force them to play their games with witnesses.  A friend, a spouse, a parent especially someone who is naturally assertive and makes great eye contact.  If they are clued into what the problems are and what needs to be done, they can provide great support as you point out your needs.

It's not tomorrow yet here.  I'm way over on the Left Coast!  I will search for this document or something that describes it and post it or tell you I couldn't find it.  I will at least give you the full citation for where it was published.

Laotr, Tator, Quix

[Rena705]

Hi Quix...I can't believe all the work you are going to for me and you need to know how much I appreciate it!  Yes, I am one of those Canadian's and yes I agree that none of the "specialists" are very motivated to help.  I am feeling a little like the patient that is put in the corner and looked at occasionally to see if she is still alive and breathing...and how confident should I feel with a neurologist that has a hissy fit if things don't go her way and wants an apology before she will see me again?  I don't have much faith in her but like I said, my G.P. told my husband and I that "I don't know any other Neurologists so you have to stay with her, you have no choice".  I know for a fact that my G.P. and the Neuro are friends and that tells me that the apology is bogus and they are just playing games with my life and I have to tell you that it HURTS LIKE HE**!!

Quix, one thing I just don't understand is that we have Healthcare that is provided by the government and is partially paid by us.  Why do these specialists treat us the way they do...holding diagnosis back from us, playing stupid games like mine is playing, holding back drugs that we should be taking, for what reason, God only knows?  Am I wrong to have the belief that these specialists are supposed to work for the people and there are certain ethics that they are supposed to follow?  I am so frustrated and I do understand that there are not enough doctors for the amount of people in our province right now but does that give the ones we have the right to treat us any differently than if they were not overworked and the doctor/patient ratio were normal?

I'm sorry, I don't have the right to ask such questions of you but I guess I need to vent before I go see the "horses patoot" tomorrow! tee hee  I would be very interested in that information on the use of disease modifying agents in MS.  If you can find it I will print it off and take it with me tomorrow.

I do worry, as I imagine most of us do, about angering the specialist as they sort of do have our lives and our future's in their hands.  If they refuse to see me where will I turn then?  The shortage of doctors is due to a large influx of people coming into the province to work and to even find a G.P. is virtually impossible.  I am soooo tired of all of these stupid games and the waiting and the not knowing where my life is going...it's no wonder depression is a symptom of MS...I think that they should add to the list of symptoms of MS...Neurologists and G.P.'s!

Hugs,

Rena705

[Rena705]

Hey Penn...I have my dentist appt. at 9:00 and my neuro at 3:00 so I will have a little time to build up my strength and get ready for the neuro.  I agree that I have put up with enough of this **** and I NEED THESE DRUGS!!!  Guess I will know more after 3:00 tomorrow and I will let you know and thanks so much for your support, I really appreciate it!

Hugs,

Rena705

[Quixotic1]

I checked an you are from our fair neighbor to the north, prompting me to comment that I never met a Canadian I didn't like.  My browser did indeed, crash and I posted just in time.  I think I can find some good info for you.  My comments on malpractice were based on the Standard of Practice here in the States.  BUT!  I think I have found a source that talks about the evolution of MS treatment in Canada.  They used to, I think, have an official limit on the diagnosis of MS which mandated more than two attacks over a given period of time, so I see where the neuro (who still sounds like a horse's patoot) may be coming from.  But, I think I found that that was dropped and revised in 1999 to allow for a more flexible set of criteria in diagnosis.  I will try to find this document called the

"Consensus Statement of the Canadian MS Clinical Network on: The use of disease modifying agents in multiple sclerosis."

Sounds promising, Eh?

If I can find it, you could show your GP and your Neuro.  Surely, there are more neuros to whom your GP could refer, if you could find one.  No one seems very motivated to get you the best therapy as quickly as possible.  How common!  How discouraging!

Later, Quix

[mokibear]

Sheesh Rena, you sure are having a rotten go right now. I too think you need to be firm when dealing with the neuro on disease modifying therapy. You have been diagnosed so what is the hold up? Maybe if you go to the dentist first you'll be ticked enough to let her have it. She is not the one suffering from MS, you are. She needs to be proactive in your treatment.

Wishing you the best of luck on Monday.

(((HUGS)))
Moki

[Quixotic1]

After making the diagnosis of Relapsing Remitting MS your neuro is bordering on malpractice by withholding the DMD's.  The current Standard of Practice is to make the diagnosis as quickly as possible, even to the point of identifying people who have had only one episode, but have suggestive paraclinical results like a postive MRI or VEP, and starting them on a med.  When someone is very suggestive with positive objective findings this is called a Clinically Isolated Syndrome - CIS.  These people are started on drugs to PREVENT or DELAY they progressing to full-blown MS.  Generally the odds of someone with CIS developing MS within the next several years after the first attack is 80%.  Your neuro is WAY, WAY out on a limb by withholding for three attacks.  It is well-decribed that some people may not have a second or third attack for several years, but during that time they continue to accrue brain lesions and often disability.  She is highly DEFECTIVE in my, Oh, so humble opinion.

You must discuss this with your GP and find a new neuro.  You can use the methods we have already talked about.  The thread called "MRIs, Lesions and Symptoms" has an essay pretty far down in the thead called, "Why it is Important to see an MS Specialist."  That essay lists the two websites for finding new neuro's names.  Then you can cross-check any names with the patient-evaluated list of MS doctors given to us by BellaBella in her recent thread.

Though not all neuros are accepting of the concensus to treat the patient even after just one attack if they meet other criteria, if the patient has the diagnosis of MS - and you do, don't you? - withholding disease modifying therapy is malpractice.  If the argument is that they don't know yet which "category" of MS to place you in, then the prudent move is to begin the therapy anyway.  The likelihood, if you have had one attack with subsequent improvement, is higher than 85% that you have a relapsing form.  Those are odds any good MS specialist would go with.

Do you live in the US?  My web browser is about to crash.  I'm going to post this.

Quix

[pennst8r]

Holy cow, are you getting it from all sides! Is there a full moon that everyone is in bad sorts all at the same time???

How I wish I could be helpful, but alas, I can only offer my sympathy and cyber hugs. It sure is true that your symptoms dry up and blow away as soon as you get to the docs - amazing!

Will you have to go right from one to the other on Monday? One doc in a day is enough! Be firm and obnoxious at the neuro if need be. Insist on the treatment you want - you need. Get fired up!

Good luck and keep us posted

Penn

[Rena705]

Well now I have a dentist appointment for Monday at 9:00 a.m. as I think I have a BIG Problem!  I had a root canal drained last Tuesday and they said it was full of infection so they bleached it and put in another temporary filling but he figures that he is going to have to pull it.  

Well I woke up this morning with a massive toothache and it isn't getting any better with brushing, flossing or rinsing with salt water so......

Looks like I may have to have a tooth extraction BEFORE I meet with the neurologist...

Here I thought that going to the Neurologist would be like getting a tooth pulled...

Now I get the joy of both in ONE DAY!!!

HEELLLLPPPP MEEEEEE!

Rena705