Aa
Thanks for nothing I guess....
Well I received a response from the woman at the MS Society...she is in a position of power I would say as she has given her title as ********* **** *********. The following is the response I received:
Hi Rena,
I’m sorry it has taken me a while to respond. I was away all of last week and wanted to be sure to take time and read your long letter thoroughly. I only have two points to offer.
First, the access to disease modifying drugs is based on very strict criteria that closely parallel the original drug study criteria which proved the drugs to be effective under those conditions which met those criteria. Things like the number and type of exacerbations in a given period, the type of MS etc…are all part of this complicated formula. I have no idea whether or not your illness fits these parameters (which may vary slightly from province to province) but just wanted to suggest to you that these are the kinds of things the physicians are assessing when they are examining you.
Second, I think that the concerns related to you about doctors blacklisting you are overstated. Yes, given we all have a responsibility to use our public health care system in a responsible way, doctors and all health care professionals will try to discourage ‘doctor shopping’ for a couple of reasons. First and foremost, having multiple physicians increases the chance of conflicted information for the patient. Second, of course is the concern for wasted valuable health care dollars. I certainly am not suggesting that this is what you are doing in any way, but just that this is one of the concerns over multiple physicians.
Thank you for taking the time to be in touch,
Warm regards,
SO...most of you know the story of my life from Feb. 2007 to now so I won't go into it again...the following is a few important excerpts from the letter I had sent to her:
So, regardless as to whether or not my MRI showed any new lesions, we both know that it doesn't mean that there is no demyelination occurring. The lesions could have been unable to see at the time of my MRI in November and they could be visible now. There has been no other explanation for my failing eyesight. I have been to my Ophthalmologist 5 times since Feb. 2007 and each and every time he has stated that the problem is Neurological but he will not take on the responsibility of stating the same to my Neurologist because as he says "I am not a Neurologist and therefore not qualified to make a statement such as that." He has done at least two vision acuity tests and the result remain the same but he will not budge. I would like to see a Neuro/Ophthalmologist but I don't know where to find one. There has been no other explanation for any of my symptoms including the pain in my legs, the numbness in my left arm, leg, the left side of my face and scalp, my inability to speak properly (slurring, stuttering, inability to find words), difficulty with my equilibrium, memory problems, paresthesias, hearing problems, and on and on...
I recently received the following information from a friend that found it on the internet...now I am the first to admit that you can't believe everything you see on the internet but I feel this is viable information.
MS is a continuously active and progressive disease process on a cellular level. Clinicians traditionally have viewed MS as myelin degeneration with preservation of the core axons. However, this does not fully explain the clinical course of MS, particularly the long-term disability of secondary-progressive MS.
Current models of demyelination hold that acute inflammation results in destruction of the myelin sheaths. This is followed by some degree of tissue repair that corresponds to the relapsing-remitting course of MS.9-11
Even during periods of clinical remission, however, there is ongoing disease activity. The eventual result: permanent destruction of individual axons and the clinical presentation of secondary-progressive MS.7 So, early identification of demyelinating activity with timely intervention may significantly delay or prevent the resultant disability of CDMS.12
This is the link to this article written by Leonard V Messner, O.D.:
http://www.revoptom.com/index.asp?page=2_820.htm
I really don't know what I am asking by sending you this letter Ms Royale. I have been researching this disease for a long time and it seems as though it has really gotten me nowhere. I know in my heart that I should be given the option of the disease modifying drugs or at least given the opportunity to have the health care made available to me that other MS patients receive. I believe that I have the right to regular follow up care by a Neurologist and being told that I will be seen at a Neurologists discretion is rather useless in my mind. A person that has been diagnosed should be followed up on a regular basis and making a decision that a disease process is not active simply by counting lesions is not ethical. In this day and age of advanced MRI capabilities and the knowledge that the medical community has about this disease in comparison to what was available in 1993 when I was diagnosed is phenomenal.
I don't expect you to speak for me in any way, shape or form but any advice that you may be able to offer would be gratefully accepted. I have tossed around the idea of travelling to a different city or even in to the U.S.A. to get another opinion on the status of my disease but truthfully, I really don't know what to do. It terrifies me to think that there is a possibility of my next relapse being something that will send me into the category of PPMS and if there is a way I can avoid it I would appreciate knowing what steps I should take.
SO...basically I have been told that I may not fit the McDonald Criteria...which according to her "may vary from province to province"...what's up with that?
I have been told that rather than being "black-balled" I am being discouraged from DOCTOR SHOPPING???? Holy Hanna...if I have been "doctor shopping" the stores are definitely low on stock are they not??!!
Hmmm..."concern for wasted valuable healthcare dollars"...what a total crock!! So my doctor in essence is putting screws to me but I can't do anything about it and I have to suffer with a disease that could progress to PPMS because I COULD BE WASTING HEALTH CARE DOLLARS???? What about all those frigging people in the emergency room with a runny nose or a splinter that should be seen at a medicentre but they haven't got the smarts to figure that one out???
Sorry people, I am soooo angry right now and I just wonder now why depression is a huge symptom of MS?? I really thought that this entity called the MS Society of Canada was there to assist people with MS but I have had my nose shut in the door so many times now that I don't think I can recommend them to anyone!
I honestly feel as though my name is on a big blackboard on the internet somewhere and if anyone I see checks for my name on this blackboard they feel that they have to give me the shaft on behalf of one neurologist with her panties in a knot! Maybe I am exagerrating but realistically, I have been screwed no matter which way I turn and I am sooo sooo tired of it all!
Well, now I know that I can't expect any help from my gp, my neurologist, my opthalmologist, the MS Society...oh wait, I think my dentist still likes me...maybe I will make an appointment with him today and see if he will see me...at least my teeth will be clean and healthy when I can't walk, talk or see right?
Rena
Hi Rena,
I’m sorry it has taken me a while to respond. I was away all of last week and wanted to be sure to take time and read your long letter thoroughly. I only have two points to offer.
First, the access to disease modifying drugs is based on very strict criteria that closely parallel the original drug study criteria which proved the drugs to be effective under those conditions which met those criteria. Things like the number and type of exacerbations in a given period, the type of MS etc…are all part of this complicated formula. I have no idea whether or not your illness fits these parameters (which may vary slightly from province to province) but just wanted to suggest to you that these are the kinds of things the physicians are assessing when they are examining you.
Second, I think that the concerns related to you about doctors blacklisting you are overstated. Yes, given we all have a responsibility to use our public health care system in a responsible way, doctors and all health care professionals will try to discourage ‘doctor shopping’ for a couple of reasons. First and foremost, having multiple physicians increases the chance of conflicted information for the patient. Second, of course is the concern for wasted valuable health care dollars. I certainly am not suggesting that this is what you are doing in any way, but just that this is one of the concerns over multiple physicians.
Thank you for taking the time to be in touch,
Warm regards,
SO...most of you know the story of my life from Feb. 2007 to now so I won't go into it again...the following is a few important excerpts from the letter I had sent to her:
So, regardless as to whether or not my MRI showed any new lesions, we both know that it doesn't mean that there is no demyelination occurring. The lesions could have been unable to see at the time of my MRI in November and they could be visible now. There has been no other explanation for my failing eyesight. I have been to my Ophthalmologist 5 times since Feb. 2007 and each and every time he has stated that the problem is Neurological but he will not take on the responsibility of stating the same to my Neurologist because as he says "I am not a Neurologist and therefore not qualified to make a statement such as that." He has done at least two vision acuity tests and the result remain the same but he will not budge. I would like to see a Neuro/Ophthalmologist but I don't know where to find one. There has been no other explanation for any of my symptoms including the pain in my legs, the numbness in my left arm, leg, the left side of my face and scalp, my inability to speak properly (slurring, stuttering, inability to find words), difficulty with my equilibrium, memory problems, paresthesias, hearing problems, and on and on...
I recently received the following information from a friend that found it on the internet...now I am the first to admit that you can't believe everything you see on the internet but I feel this is viable information.
MS is a continuously active and progressive disease process on a cellular level. Clinicians traditionally have viewed MS as myelin degeneration with preservation of the core axons. However, this does not fully explain the clinical course of MS, particularly the long-term disability of secondary-progressive MS.
Current models of demyelination hold that acute inflammation results in destruction of the myelin sheaths. This is followed by some degree of tissue repair that corresponds to the relapsing-remitting course of MS.9-11
Even during periods of clinical remission, however, there is ongoing disease activity. The eventual result: permanent destruction of individual axons and the clinical presentation of secondary-progressive MS.7 So, early identification of demyelinating activity with timely intervention may significantly delay or prevent the resultant disability of CDMS.12
This is the link to this article written by Leonard V Messner, O.D.:
http://www.revoptom.com/index.asp?page=2_820.htm
I really don't know what I am asking by sending you this letter Ms Royale. I have been researching this disease for a long time and it seems as though it has really gotten me nowhere. I know in my heart that I should be given the option of the disease modifying drugs or at least given the opportunity to have the health care made available to me that other MS patients receive. I believe that I have the right to regular follow up care by a Neurologist and being told that I will be seen at a Neurologists discretion is rather useless in my mind. A person that has been diagnosed should be followed up on a regular basis and making a decision that a disease process is not active simply by counting lesions is not ethical. In this day and age of advanced MRI capabilities and the knowledge that the medical community has about this disease in comparison to what was available in 1993 when I was diagnosed is phenomenal.
I don't expect you to speak for me in any way, shape or form but any advice that you may be able to offer would be gratefully accepted. I have tossed around the idea of travelling to a different city or even in to the U.S.A. to get another opinion on the status of my disease but truthfully, I really don't know what to do. It terrifies me to think that there is a possibility of my next relapse being something that will send me into the category of PPMS and if there is a way I can avoid it I would appreciate knowing what steps I should take.
SO...basically I have been told that I may not fit the McDonald Criteria...which according to her "may vary from province to province"...what's up with that?
I have been told that rather than being "black-balled" I am being discouraged from DOCTOR SHOPPING???? Holy Hanna...if I have been "doctor shopping" the stores are definitely low on stock are they not??!!
Hmmm..."concern for wasted valuable healthcare dollars"...what a total crock!! So my doctor in essence is putting screws to me but I can't do anything about it and I have to suffer with a disease that could progress to PPMS because I COULD BE WASTING HEALTH CARE DOLLARS???? What about all those frigging people in the emergency room with a runny nose or a splinter that should be seen at a medicentre but they haven't got the smarts to figure that one out???
Sorry people, I am soooo angry right now and I just wonder now why depression is a huge symptom of MS?? I really thought that this entity called the MS Society of Canada was there to assist people with MS but I have had my nose shut in the door so many times now that I don't think I can recommend them to anyone!
I honestly feel as though my name is on a big blackboard on the internet somewhere and if anyone I see checks for my name on this blackboard they feel that they have to give me the shaft on behalf of one neurologist with her panties in a knot! Maybe I am exagerrating but realistically, I have been screwed no matter which way I turn and I am sooo sooo tired of it all!
Well, now I know that I can't expect any help from my gp, my neurologist, my opthalmologist, the MS Society...oh wait, I think my dentist still likes me...maybe I will make an appointment with him today and see if he will see me...at least my teeth will be clean and healthy when I can't walk, talk or see right?
Rena
Rena,
I agree, and you cannot allow her to shut you up, this is your LIFE we're talking about, not hers. Seems like she doesn't want to do any real work.
Yes, we all have our breaking points. I reached mine with the mess they made of things at Cleveland Clinic and filed a complaint and made sure everyone got a copy. So, we'll see.....
Sheila
I agree, and you cannot allow her to shut you up, this is your LIFE we're talking about, not hers. Seems like she doesn't want to do any real work.
Yes, we all have our breaking points. I reached mine with the mess they made of things at Cleveland Clinic and filed a complaint and made sure everyone got a copy. So, we'll see.....
Sheila
Ya know Sunny...apparently you don't really have to have a heart or an education to work at the MS society. At least this has been made very apparent to me and it seems like you may have an idea there...who better to run the society than those that have the disease. I agree that not everyone can be bad there but I am at number 3 and the result from each of them has all been negative so the odds are not improving in their favor are they?
Sheila...she just is trying to shut me up...I am really tired of being shut up though...soon enough I am going to start making their lives really difficult...they only need to push me a little harder and I know that is only a matter of time. We all have our breaking points and I am running a little low on being patient...the saga continues I guess eh? he he
Rena
Sheila...she just is trying to shut me up...I am really tired of being shut up though...soon enough I am going to start making their lives really difficult...they only need to push me a little harder and I know that is only a matter of time. We all have our breaking points and I am running a little low on being patient...the saga continues I guess eh? he he
Rena
Hi, Rena.
Oh, I know you explained very clearly to her, she just didn't clearly read your letter.
I really resent her term "doctor shopping". And yes, if any of us were doctor shopping, we would have bought a good one from the start.
However, the evil Neuro refused to see you, so it seems to me, you need to "shop for a new one", if she cannot get the evil Neuro to see you, then she'd better find one that will see you!
Of course you have my support, you've always been more than generous with yours.
Hugs,
Sheila
Oh, I know you explained very clearly to her, she just didn't clearly read your letter.
I really resent her term "doctor shopping". And yes, if any of us were doctor shopping, we would have bought a good one from the start.
However, the evil Neuro refused to see you, so it seems to me, you need to "shop for a new one", if she cannot get the evil Neuro to see you, then she'd better find one that will see you!
Of course you have my support, you've always been more than generous with yours.
Hugs,
Sheila
ooooo... this makes me mad. Now, why is there a MS Society unless to at least support people? Exactly how do you get a job at one of these society's anyways? Could we take over and revamp these places? I think between the lot of us here we have quite a varied titles and jobs... I'm sure we'd have enough to at least come up with a few that would qualify and shake things up a bit with our "radical approach" here in believing the pt. and not counting lesions, etc.
I know, I know, not everyone there is bad, but perhaps this lady just didn't understand. But still, that's just irking!!!!
((((hugs))))
~Sunnytoday~
I know, I know, not everyone there is bad, but perhaps this lady just didn't understand. But still, that's just irking!!!!
((((hugs))))
~Sunnytoday~
Of course we are still friends...and no I am not angry with you...just explaining my view of things, like my mental state... he he.
I have been mad my dear for sooo long and right now I am needing to take a bit of time to refuel my jets. I am feeling really tired and out of sorts and just need to stand back and take a look and plan my next attack. I know you are behind me but I really can't see myself in the papers for anything right now...not even revenge! hehe I will get back on the horse, I always do but I think with last week being so crazy with company and the neuro/psych stuff that I just need a rest...I won't be far though, you can count on that!
I haven't read much on today's posts yet but will check it out. Hope you have a good evening!
Rena
I have been mad my dear for sooo long and right now I am needing to take a bit of time to refuel my jets. I am feeling really tired and out of sorts and just need to stand back and take a look and plan my next attack. I know you are behind me but I really can't see myself in the papers for anything right now...not even revenge! hehe I will get back on the horse, I always do but I think with last week being so crazy with company and the neuro/psych stuff that I just need a rest...I won't be far though, you can count on that!
I haven't read much on today's posts yet but will check it out. Hope you have a good evening!
Rena
Go get em! Be angry with me, just be angry, and use it to fuel the energy you need.
Sorry if you thought I was questioning your mental state, no way, just didn't want you to drift into 'they all hate me what's the point' type thinking, which is my style when I'm not whacking people with whatever extremity is closest.
After you've finished being mad at me, please take a little of my advice and GET SUPPORT. You have all the evidence and material needed for any legal person to fight your corner, or any politician, and if there's something in it for them, like changing policies and being voted in, they will do it. I bet there are many in your position, all banging along alone, all isolated. Rena to the rescue I think! Want to read about you in the papers as the woman who changed a nation's healthcare. Am almost exited for you.
Spoke to you at the end of my post about my eyes, the one where I titled it about Quix being right or something. Was thinking of you this afternoon while I was having a hard time at the eye hospital.
Can we still be friends?
Wish
Sorry if you thought I was questioning your mental state, no way, just didn't want you to drift into 'they all hate me what's the point' type thinking, which is my style when I'm not whacking people with whatever extremity is closest.
After you've finished being mad at me, please take a little of my advice and GET SUPPORT. You have all the evidence and material needed for any legal person to fight your corner, or any politician, and if there's something in it for them, like changing policies and being voted in, they will do it. I bet there are many in your position, all banging along alone, all isolated. Rena to the rescue I think! Want to read about you in the papers as the woman who changed a nation's healthcare. Am almost exited for you.
Spoke to you at the end of my post about my eyes, the one where I titled it about Quix being right or something. Was thinking of you this afternoon while I was having a hard time at the eye hospital.
Can we still be friends?
Wish
Laura...I agree that she really wasn't to bright to write what she did in the letter to me but I suppose I should consider the source. As I have said before, the MS Society of Canada has been of no help for me personally and I don't expect they ever will...I think it is a good example of what other's can possibly expect I guess.
Sheila...I explained very clearly to this woman that I had seen my last neuro and he asked me to move on and get a second opinion and the evil neuro now that won't see me...is just that, an evil neuro that won't see me! If I had been doctor shopping I am sure that I would have at least bought one that worked and not like the first on who's batteries are never to be recharged again and the evil one that only works if you smack her into a wall once in a while! hehe I do appreciate your support though and it's good to have my friends here to lean on! Thank you!
wishforchange...just to clear things up, first of all, I am not paranoid. It was the MS Society of Canada that brought up the subject of being "black-balled" and they were the ones that would not give me the name of a new neurologist because, and I quote, "if you see another neurologist and he/she finds out that you are seeing them because you didn't agree with what the first neurologist said, you will be blackballed by the Society of Neurologist of Alberta" which in turn is affiliated with some society of Neurologists of Canada. All I have done is stated fact as to what has happened to me and what the neurologist said in her own letter that "I will see patient at my own discretion and only with a referral letter from you (g.p.)". I know that the evil neuro and gp are close personal friends as was stated by the gp when I first was looking for a new neuro in 1994. When the evil neuro said last year that she wouldn't see me because I had gone to someone else when I was being treated by her (because she wouldn't see me for 3 days and I needed steroids) I asked the gp if she could refer me to someone new to which she responded "I don't know any other neurologists." Now we all know that a gp doesn't have to have a personal relationship with a specialist before they can refer patients to them! In July when I asked the gp to please make arrangements for me to have an appointment with the evil neuro she said she would write a referral but it was up to evil neuro as to whether she would see me or not. I again asked her to refer me to a new neuro for which I had the name and number with me and when I tried to give her this name and number she told me to hang on to it for my own information and that she will write a referral letter. As of the 1st week of September, my file with the letter started Dear Dr. *****: is still sitting on her desk and they have no idea when she is going to send it...it guess it will take as long as she wants it to take as usual and I will probably have to see her for multiple appointments before she will do anything about it.
So in the meantime, I am going to wait to see what the neuro/psych testing shows, if anything, and will take it from there. The numbness on my left side has not abated for many months and I don't care if it is MS or not but something is causing it and believe me...I am not done fighting and I will take this to the top if need be. I will let everyone know when I get the results...in a week or two... and we shall see from there. I just may have to seek legal advice but one step at a time. I have waited this long...I can wait just a little longer I guess.
Rena
Sheila...I explained very clearly to this woman that I had seen my last neuro and he asked me to move on and get a second opinion and the evil neuro now that won't see me...is just that, an evil neuro that won't see me! If I had been doctor shopping I am sure that I would have at least bought one that worked and not like the first on who's batteries are never to be recharged again and the evil one that only works if you smack her into a wall once in a while! hehe I do appreciate your support though and it's good to have my friends here to lean on! Thank you!
wishforchange...just to clear things up, first of all, I am not paranoid. It was the MS Society of Canada that brought up the subject of being "black-balled" and they were the ones that would not give me the name of a new neurologist because, and I quote, "if you see another neurologist and he/she finds out that you are seeing them because you didn't agree with what the first neurologist said, you will be blackballed by the Society of Neurologist of Alberta" which in turn is affiliated with some society of Neurologists of Canada. All I have done is stated fact as to what has happened to me and what the neurologist said in her own letter that "I will see patient at my own discretion and only with a referral letter from you (g.p.)". I know that the evil neuro and gp are close personal friends as was stated by the gp when I first was looking for a new neuro in 1994. When the evil neuro said last year that she wouldn't see me because I had gone to someone else when I was being treated by her (because she wouldn't see me for 3 days and I needed steroids) I asked the gp if she could refer me to someone new to which she responded "I don't know any other neurologists." Now we all know that a gp doesn't have to have a personal relationship with a specialist before they can refer patients to them! In July when I asked the gp to please make arrangements for me to have an appointment with the evil neuro she said she would write a referral but it was up to evil neuro as to whether she would see me or not. I again asked her to refer me to a new neuro for which I had the name and number with me and when I tried to give her this name and number she told me to hang on to it for my own information and that she will write a referral letter. As of the 1st week of September, my file with the letter started Dear Dr. *****: is still sitting on her desk and they have no idea when she is going to send it...it guess it will take as long as she wants it to take as usual and I will probably have to see her for multiple appointments before she will do anything about it.
So in the meantime, I am going to wait to see what the neuro/psych testing shows, if anything, and will take it from there. The numbness on my left side has not abated for many months and I don't care if it is MS or not but something is causing it and believe me...I am not done fighting and I will take this to the top if need be. I will let everyone know when I get the results...in a week or two... and we shall see from there. I just may have to seek legal advice but one step at a time. I have waited this long...I can wait just a little longer I guess.
Rena
What is this whole 'doctor shopping' concept about? Is it that they are scared the patient will uncover the incompetence of one physician over another? If you have a rubbish doctor, you go find another better one. If that makes you a bad person then their concept of good and bad is very weird.
Remember medicine is an Institiution, and those in it are invariably institutionalized, far removed from the spectrum of experiences in the world outside, which is not structured to fit in with their expectations. Patients are not there to fit into some criteria or label or for cost effectiveness, they are supposed to be the whole purpose of the job. That is what we are taught in training, and the first thing that gets forgotten when we start work and have to fit in with the obssessive and introverted little culture of the medical world. That is why I was ejected, why I dread returning.
If this woman's child, mother, sister, herself, were in your situation, would she be quoting about wasting money etc.? Somehow I think not.
Rena, I am the most paranoid person here, okay, I get the award for that, no-one else, but even I am telling you to drop the paranoia. I don't think you have been blacklisted. My reasoning? If your healthcare is anything like ours they do not have the organizational acumen to follow through such an action, and likely cannot be bothrered. So forget that one.
I think it is time for you to get representation, legal if necessary. You have a case here. You are diagnosed and being denied treatment, I think you would be taken on by a solicitor. Do you have some Citizen's Advice Beuro (can't spell) to go to? Your local member of parliament or councillor? The powers that be will take their word more seriously. I have used my MP myself for a medical matter before, we didn't succeed, but we got much further than I could have done alone, it was an entirely different case. Don't fight this one alone anymore, get legal and political powers behind you, you may evern set a new precedent for treatment in Canada. What an achievement that would be!
Your diagnosis is your weapon. Nobody can accuse you of not having this condition, you are in a pretty strong postition, but being belittled by those who recognize you are fighting alone.
Me in your situation? You need a bit more of 'me' in you, I would be dragging them screaming to the right place. My enemies are many, made from me fighting too hard, the gently gently approach never sat well on my shoulders. Time to learn from the expert, you will not be popular (do you care?), but mixed in with your natural maturity and restraint will get results.
I am so famous in my area I never even have to give my name when phoning any medical department, or if I do there is a stunned silence then I am put on hold while someone senior is found to 'deal' with me. They know I know the system, and they know what I do to those who wrong me, and they take me seriously. I will die with a list of enemies longer than my friends, but it does yield results now and again. And still they let me work for them, still they treat me. You have nothing to fear by making a stink, but you need to do it with someone who knows the system, and has the clout to scare them.
What have you got to lose?
wish
Remember medicine is an Institiution, and those in it are invariably institutionalized, far removed from the spectrum of experiences in the world outside, which is not structured to fit in with their expectations. Patients are not there to fit into some criteria or label or for cost effectiveness, they are supposed to be the whole purpose of the job. That is what we are taught in training, and the first thing that gets forgotten when we start work and have to fit in with the obssessive and introverted little culture of the medical world. That is why I was ejected, why I dread returning.
If this woman's child, mother, sister, herself, were in your situation, would she be quoting about wasting money etc.? Somehow I think not.
Rena, I am the most paranoid person here, okay, I get the award for that, no-one else, but even I am telling you to drop the paranoia. I don't think you have been blacklisted. My reasoning? If your healthcare is anything like ours they do not have the organizational acumen to follow through such an action, and likely cannot be bothrered. So forget that one.
I think it is time for you to get representation, legal if necessary. You have a case here. You are diagnosed and being denied treatment, I think you would be taken on by a solicitor. Do you have some Citizen's Advice Beuro (can't spell) to go to? Your local member of parliament or councillor? The powers that be will take their word more seriously. I have used my MP myself for a medical matter before, we didn't succeed, but we got much further than I could have done alone, it was an entirely different case. Don't fight this one alone anymore, get legal and political powers behind you, you may evern set a new precedent for treatment in Canada. What an achievement that would be!
Your diagnosis is your weapon. Nobody can accuse you of not having this condition, you are in a pretty strong postition, but being belittled by those who recognize you are fighting alone.
Me in your situation? You need a bit more of 'me' in you, I would be dragging them screaming to the right place. My enemies are many, made from me fighting too hard, the gently gently approach never sat well on my shoulders. Time to learn from the expert, you will not be popular (do you care?), but mixed in with your natural maturity and restraint will get results.
I am so famous in my area I never even have to give my name when phoning any medical department, or if I do there is a stunned silence then I am put on hold while someone senior is found to 'deal' with me. They know I know the system, and they know what I do to those who wrong me, and they take me seriously. I will die with a list of enemies longer than my friends, but it does yield results now and again. And still they let me work for them, still they treat me. You have nothing to fear by making a stink, but you need to do it with someone who knows the system, and has the clout to scare them.
What have you got to lose?
wish
Hi, Rena.
Don't ever allow anyone to make you feel worthless!!!
Each and every life on this earth is worth all the money in the world to attempt to improve our health. There is no such thing as wasted money when someone is sick.
You are a priceless gift from God.
As for "doctor shopping", well, what are we expected to do, just sit and suffer, when one doctor, two, three, don't have a clue?
I agree, I think you should write to her, and tell her that you don't think her comprehension of your letter was very good, and that the Neuro advised you to seek a second opinion.
I'm glad you're calmed down, because I am still fuming over her letter to you!
How dare she!!!!!
Hugs,
Sheila
Don't ever allow anyone to make you feel worthless!!!
Each and every life on this earth is worth all the money in the world to attempt to improve our health. There is no such thing as wasted money when someone is sick.
You are a priceless gift from God.
As for "doctor shopping", well, what are we expected to do, just sit and suffer, when one doctor, two, three, don't have a clue?
I agree, I think you should write to her, and tell her that you don't think her comprehension of your letter was very good, and that the Neuro advised you to seek a second opinion.
I'm glad you're calmed down, because I am still fuming over her letter to you!
How dare she!!!!!
Hugs,
Sheila
Rena,
I have read some of the experiences with LDN on the primary progressive board at the UK MS society's website. It certainly offers hope to PPMS patients who aren't being offered much in the way of hope. As for you, wow that is quite a crazy letter. I'm surprised she even put some of that in writing to you.
The comment on the parameters of MS varying from province to province blows my mind - or what's left of it anyway. Obviously that dx hinges on the cash pot that a province has for health care. I feel sorry for anyone living in a province that has more people and less money to go around. That whole setup of funding by province is crazy.
As for doctor shopping, I think others have spoken to the absurd nature of that comment.
I am so sorry that you received this response, but it sure does illuminate for the rest of us the challenges you face.
wishing you much stamina to continue this fight,
Laura
I have read some of the experiences with LDN on the primary progressive board at the UK MS society's website. It certainly offers hope to PPMS patients who aren't being offered much in the way of hope. As for you, wow that is quite a crazy letter. I'm surprised she even put some of that in writing to you.
The comment on the parameters of MS varying from province to province blows my mind - or what's left of it anyway. Obviously that dx hinges on the cash pot that a province has for health care. I feel sorry for anyone living in a province that has more people and less money to go around. That whole setup of funding by province is crazy.
As for doctor shopping, I think others have spoken to the absurd nature of that comment.
I am so sorry that you received this response, but it sure does illuminate for the rest of us the challenges you face.
wishing you much stamina to continue this fight,
Laura
Thank you for your offering of help with the LDN drug...I have heard a little about it but would have to do some further investigating before I would try it. I am finishing a neuro/psych consultation tomorrow and should have the results of that in a few weeks. I am pretty sure that they are going to figure out that there are cognitive problems and I am hoping that I will get somewhere after that. Of course I will let everyone on here know the situation but I am going to go with this first and then see where I go from there.
Again, thankyou for your support and offer of assistance and I am really happy that this has worked for your husband...$70/3 month supply...there really is no comparison is there...as long as it works why not?
Lots of Hugs,
Rena
Again, thankyou for your support and offer of assistance and I am really happy that this has worked for your husband...$70/3 month supply...there really is no comparison is there...as long as it works why not?
Lots of Hugs,
Rena
Your story sounds horrible - your frustration level must be off the chart! When you say disease modifying drugs I presume you mean CRAB drugs. My husband was diagnosed with MS four years ago - he was very "lucky" in that the diagnoses was fast after the first major symptoms. I guess he`s probably had it for many more years than that but when his eyes started jumping (nystagmus) that was a big clue and after an MRI and LP it was confirmed.
Unlike you, once we heard about the low sucess rate (30% I think?) of the CRAB drugs, and then the cost, which as a British woman used to getting free care, horrified me, we decided to look elsewhere. My husband works as a stone mason and we live in San Francisco (the most expensive place in the world I think!!) and we just couldnt afford for him to be laid up with flu like symptoms or feeling crappy for any part of the working week. No work, no rent money! And we had no medical insurance.
Anyway, we found LDN after much Googling and persuaded his neuro at UCSF to prescribe it on a trial basis. We promised Michael would start Avonex (we lied!) if the LDN didnt help. Bearing in mind it takes 6-9 months for any real benefit to show, Michael kept of taking it and four years later still does!
He has an MRI once a year and there has been no negative changes in four years. Quite a few of his active lesions are no more (he had a lot) and he feels as good as he can with it. He still works every day - feels tired of course - but no exaserbations, no new symptoms and NO Avonex! And at less than $70 for a three month supply, we can afford to pay the rent. His neuro still prescribes the LDN and still tries to push the Avonex on him each visit! We just laugh at this point. Why change something that is working well.
Sorry, my long story is really about suggesting you get Googling and read about LDN and maybe find a doctor to prescribe. It doesnt have to be a Neuro. Any doctor willing to think outside the box . I belong to a Yahoo LDN support group and someone there has a list of doctors in all countries (including Canada if thats where you are?) that do telephone consultations and will prescribe based on that.
I can give you loads more info if you run into trouble with your research so please just ask. I`m about to start taking it myself for my Fibro and arthritis problems as it also helps enormously with those conditions too.
Good luck and I wish you better health!
Bev
Unlike you, once we heard about the low sucess rate (30% I think?) of the CRAB drugs, and then the cost, which as a British woman used to getting free care, horrified me, we decided to look elsewhere. My husband works as a stone mason and we live in San Francisco (the most expensive place in the world I think!!) and we just couldnt afford for him to be laid up with flu like symptoms or feeling crappy for any part of the working week. No work, no rent money! And we had no medical insurance.
Anyway, we found LDN after much Googling and persuaded his neuro at UCSF to prescribe it on a trial basis. We promised Michael would start Avonex (we lied!) if the LDN didnt help. Bearing in mind it takes 6-9 months for any real benefit to show, Michael kept of taking it and four years later still does!
He has an MRI once a year and there has been no negative changes in four years. Quite a few of his active lesions are no more (he had a lot) and he feels as good as he can with it. He still works every day - feels tired of course - but no exaserbations, no new symptoms and NO Avonex! And at less than $70 for a three month supply, we can afford to pay the rent. His neuro still prescribes the LDN and still tries to push the Avonex on him each visit! We just laugh at this point. Why change something that is working well.
Sorry, my long story is really about suggesting you get Googling and read about LDN and maybe find a doctor to prescribe. It doesnt have to be a Neuro. Any doctor willing to think outside the box . I belong to a Yahoo LDN support group and someone there has a list of doctors in all countries (including Canada if thats where you are?) that do telephone consultations and will prescribe based on that.
I can give you loads more info if you run into trouble with your research so please just ask. I`m about to start taking it myself for my Fibro and arthritis problems as it also helps enormously with those conditions too.
Good luck and I wish you better health!
Bev
Yeah...her words made me feel rather worthless...like I am not worth wasting their precious money on? Then I was talking to Mom and like she said, "it's not like you have been doctor shopping at all...you have only seen 2 and the evil one won't see you so how can you be wasting their money?!"
Now that I am calmed down I am sooo tempted to write back to her and just ask her what the heck that was all about! I had explained to her that I had seen the last neuro for about 9 months when he dropped my like a hot potato and TOLD ME to get a second opinion and this evil one WON'T see me...I guess she has tunnel vision like all the rest of em...they only see what they want to see.
Lots of Hugs,
Rena
Now that I am calmed down I am sooo tempted to write back to her and just ask her what the heck that was all about! I had explained to her that I had seen the last neuro for about 9 months when he dropped my like a hot potato and TOLD ME to get a second opinion and this evil one WON'T see me...I guess she has tunnel vision like all the rest of em...they only see what they want to see.
Lots of Hugs,
Rena
Hi, Rena.
I am appalled at that woman's response to your letter!!!!
I am so angry over her words "WASTING HEALTH CARE DOLLARS".
When you are sick, no dollar is WASTED in effort to diagnose and treat the cause!!!
I guess, they want us in a wheelchair before they diagnose us.
I'm fed up with so-called health-care
Yesterday, I was feeling very discouraged, and while looking for something in my wallet, my eyes caught the Serenity Prayer I keep there.
I was particularly drawn to the last line;
"God grant me the courage not to give up on what I think is right, even though I think it is hopeless".
So, please, Hon, keep fighting for what you know is right!
Hugs,
Sheila
I am appalled at that woman's response to your letter!!!!
I am so angry over her words "WASTING HEALTH CARE DOLLARS".
When you are sick, no dollar is WASTED in effort to diagnose and treat the cause!!!
I guess, they want us in a wheelchair before they diagnose us.
I'm fed up with so-called health-care
Yesterday, I was feeling very discouraged, and while looking for something in my wallet, my eyes caught the Serenity Prayer I keep there.
I was particularly drawn to the last line;
"God grant me the courage not to give up on what I think is right, even though I think it is hopeless".
So, please, Hon, keep fighting for what you know is right!
Hugs,
Sheila
Meg...thank you for your kind words...I realize that you are new and it's too bad that you already know how tough this situation can be...I hope things look up soon but I am running out of options.
Shell...I agree with everything you have said and yes I may have to come to the states for some help but I wrote in my journal about how I feel about that and why I don't feel I should have to and how frustrated I am that no one is listening to any of us other than us and that there should be an advocate out there somewhere for us...I just know now that it's obviously not the MS Society of Canada!
Shelley...I appreciate your offer of support and your kind words. The feeling is mutual though you know and if you need me I am here for you as well...I am not generally as angry as I am today...I am usually pretty easy to get along with but we all have our breaking point and I have about reached mine.
Lots of Hugs,
Rena
Shell...I agree with everything you have said and yes I may have to come to the states for some help but I wrote in my journal about how I feel about that and why I don't feel I should have to and how frustrated I am that no one is listening to any of us other than us and that there should be an advocate out there somewhere for us...I just know now that it's obviously not the MS Society of Canada!
Shelley...I appreciate your offer of support and your kind words. The feeling is mutual though you know and if you need me I am here for you as well...I am not generally as angry as I am today...I am usually pretty easy to get along with but we all have our breaking point and I have about reached mine.
Lots of Hugs,
Rena
I'm not sure what I can say about what you're going through because I havent' been where you are now...however, I do want to offer my support. I'm sorry you are in the position you're in right now and I hate it that you're not getting the help you need. I'm praying for you and hoping you're feeling better soon! I understand the anger and depression part, I think we all feel that at one time or another from dr's.
Hope you are feeling better soon~HUGS!
Shelley
Hope you are feeling better soon~HUGS!
Shelley
Rena,
To suggest you do not meet the criteria now, after over 10 years is absurd (you were dx'd in 1993). You are an educated patient and you are being denied the care you deserve, as you articulated here to her. To further suggest parameter differences from province to province does say a lot here to me, though I know it adds to your frustration. It is in fact what you've and many have experienced here in the states too. She admitted it, basically.
There ARE absolutely differences in interpretations of the criteria and it's unfortunate, but true. She with or without realizing it, confirms the injustices at some level to me. Though it's left you with no further progress, I am glad she at least engaged in communication with you. Though she didn't offer you anything.
Her response is further evidence folks, that it's a difficult disease to dx (though Rena was dx'd but not treated - double edged sword), too many interpretations and not always Drs who keep up with the changes in criteria which was tweaked to make it more flexible.
I'm sorry you are still fighting for yourself, and not getting the help you need on your end, but still not alone, not by a long shot. You may have to come to the states Rena. But, as you already know, we've got problems here too and some very much the same. Thankfully though, as we have been seeing a lot lately on our forum. Large University well known hospitals making it known their position on "inactive" MS. That it's just not so.
ttys Rena Gal,
Love ya,
Shell
To suggest you do not meet the criteria now, after over 10 years is absurd (you were dx'd in 1993). You are an educated patient and you are being denied the care you deserve, as you articulated here to her. To further suggest parameter differences from province to province does say a lot here to me, though I know it adds to your frustration. It is in fact what you've and many have experienced here in the states too. She admitted it, basically.
There ARE absolutely differences in interpretations of the criteria and it's unfortunate, but true. She with or without realizing it, confirms the injustices at some level to me. Though it's left you with no further progress, I am glad she at least engaged in communication with you. Though she didn't offer you anything.
Her response is further evidence folks, that it's a difficult disease to dx (though Rena was dx'd but not treated - double edged sword), too many interpretations and not always Drs who keep up with the changes in criteria which was tweaked to make it more flexible.
I'm sorry you are still fighting for yourself, and not getting the help you need on your end, but still not alone, not by a long shot. You may have to come to the states Rena. But, as you already know, we've got problems here too and some very much the same. Thankfully though, as we have been seeing a lot lately on our forum. Large University well known hospitals making it known their position on "inactive" MS. That it's just not so.
ttys Rena Gal,
Love ya,
Shell
I cant help much yet, i am new ...but i cannot fathom why people like cannot get help
Its very discouraging for you and and for all of us. I am sure someone else can help ....and whether they can help or not, just writing helps a lot and getting positive answers back. I will pray that something good happens with you.
hugs, meg
Its very discouraging for you and and for all of us. I am sure someone else can help ....and whether they can help or not, just writing helps a lot and getting positive answers back. I will pray that something good happens with you.
hugs, meg
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