Aa
Rena This is for you
Rena, I found a Consensus Paper from the US National MS Society that states unequivocally that it is unethical for a person to be denied access to the DMDs by a government or insurer based on several points. Some of these points are:
Patients access to drugs is not to be limited by the patient's frequency of attacks
Patients should not be required to have any certain number of attacks within the past year to qualify for medication
Absence of attacks should not be used as a reason to stop medication (also implying that it should not be used as a reason to withhold)
Anyway, I know it is the US statement, but I thought you should read it because it deals with the ethics involved which should be universal.
http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/download.aspx?id=8
To add to your appeal.
Quix
Patients access to drugs is not to be limited by the patient's frequency of attacks
Patients should not be required to have any certain number of attacks within the past year to qualify for medication
Absence of attacks should not be used as a reason to stop medication (also implying that it should not be used as a reason to withhold)
Anyway, I know it is the US statement, but I thought you should read it because it deals with the ethics involved which should be universal.
http://www.nationalmssociety.org/about-multiple-sclerosis/treatments/download.aspx?id=8
To add to your appeal.
Quix
Well, to an extent you are already being "blackballed." The two doc's seeing you are conspiring to keep you from treatment. Clearly there are some big egos clashing with one another there and they do it through punishing patients who have slept with the enemy.
It would do no harm to speak to an attorney who specializes in medical care cases. You need to know all of your options. You don't have to "act" on what you learn, but you can't move forward until you know more. In the US, we have many protective laws which carry sanctions for "retaliation." For instance, if you invoke the Americans with Disabilities Act for accomodations from your employer and he fires you, he has broken federal law.
The attorney can tell you what your rights are and what protection you might have if other doctors close ranks and refuse to see you. I'm sure there are some protections in the NHS. I believe that you need to see an MS Specialist who is not a part of the local gang. Of course this is going to mean travel to a different city. But, if you could see someone who whould state for the record that you should be treated, it would make any legal case much easier. Do you have any friends in Ontario. I have heard that there is less of a waiting period to see specialists in the larger cities.
But, you have said that this "nurrow" saw you last fall and "refuses to see you again" and your GP won't do anything but follow the advice in a letter that is now 8 MONTHS OLD!! Yep, you are already being blackballed. Your GP is as evil as the neuro. I practiced general medicine and this behavior is completely unethical!
IMNTHO, Quix
It would do no harm to speak to an attorney who specializes in medical care cases. You need to know all of your options. You don't have to "act" on what you learn, but you can't move forward until you know more. In the US, we have many protective laws which carry sanctions for "retaliation." For instance, if you invoke the Americans with Disabilities Act for accomodations from your employer and he fires you, he has broken federal law.
The attorney can tell you what your rights are and what protection you might have if other doctors close ranks and refuse to see you. I'm sure there are some protections in the NHS. I believe that you need to see an MS Specialist who is not a part of the local gang. Of course this is going to mean travel to a different city. But, if you could see someone who whould state for the record that you should be treated, it would make any legal case much easier. Do you have any friends in Ontario. I have heard that there is less of a waiting period to see specialists in the larger cities.
But, you have said that this "nurrow" saw you last fall and "refuses to see you again" and your GP won't do anything but follow the advice in a letter that is now 8 MONTHS OLD!! Yep, you are already being blackballed. Your GP is as evil as the neuro. I practiced general medicine and this behavior is completely unethical!
IMNTHO, Quix
I do agree with Quix on this one ....my neuro (Dr. M.) is holding an immature little grudge against me and I don't think anything will change her attitude to be honest with you. A quick explanation...I first went to see her in October of 2006 with the severe pain in my right temple and the drooping of my left eye. At that time she treated me with IV steroids but did not have a definitive name for what this was. I did fine until Feb. 2007 when I was again attacked by this pain in my right temple and drooping of my left eye. I attempted to get in to see the first neuro, Dr. M and this was a Wednesday. She stated that she wouldn't see me until Friday. I couldn't function with the severe pain I was in so I went to the clinic where I have a regular gp but she was on vacation so I was seen by Dr.L (gp). She was very concerned and contacted the university hospital and the MS Specialist (Dr. W. aka bonehead) there agreed to see me.
I went to see the neuro at the university (Dr. W.) even though I had seen him years before (he originally diagnosed me with MS) and I was not fussy about him then but the pain was so bad I had to see someone! He diagnosed me has having Paratrigeminal Neuralgia (PN) and strangely he agree to treat me for this as long as I agreed to see NO ONE ELSE regarding this. I found this strange at the time but who was I to disagree when he had the relief I was needing and was holding it over my head like a worm on a hook??? He treated me with IV steroids and weaning prednisone and insisted that I take 6 weeks off of work. This was the beginning of the end of my job and I still wonder if I would have been able to return to work after a couple of weeks after the treatment.
Anyway, about a week later, Dr. M's receptionist called to ask if I wanted to make an appointment? I said no, I have been seen by Dr. W. at the university and he diagnosed me with (PN) and he will only treat me for it if I don't see anyone else about it so I won't be coming back for the time being. And that was the undoing of my life for the last 16 months!
In November of 2007 I was still seeing Dr. W (bonehead) and he finally did the first MRI since I first saw him in 1993! He only did it because I presented with 10 consecutive days of vertical double blindness and I pretty much insisted on it. The result came back that I do have MS (well duh) and perhaps I should seek out a second opinion. I was dropped by him like a hot potato. Truthfully I didn't mind getting away from him because I feel that he is not necessarily capable of treating patients anymore due to his age...he apparently was overdosing me on several meds and when asked about it he told me to stop them all cold turkey! I have a history of seizures and stopping those meds is not an option,.
Anyway, in the meantime I had asked my gp to help me go back to see Dr. M. She said that she had spoken to Dr. M. and that she wasn't sure that Dr. M. would agree to see me with the way I had walked away from her care the last time. I explained to her that Dr. W. insisted that I don't see anyone else about the (PN) and that is why I didn't go back to her...I was only doing what I was told. My gp said that she would try to plead my case and write her a letter but she said that she was not impressed! I did get to see Dr, M. once though in November. She basically told me that my MS is in-active and that she would not be seeing me anymore unless it is an emergency and even then I have to go through my gp. I told her that my gp has told me straight out that she knows nothing about MS but Dr. M. didn't seem too concerned. Dr. M. sent one letter to Dr. Z, my gp, and being that Dr. Z knows nothing about MS she goes strictly by what Dr. M. stated in that one letter and will listen to nothing else. She simply says that Dr. M. stated that your disease is in-active so there is no reason to go there.
So yeah...Tammy there is something wrong with this picture! I feel like the picked on girl in the junior high locker room and Dr. M is the big bully making my life miserable. I am still trying to get a new dr. but it is really hard. I am going to see if my gp will find a neuropthalmologist for me to help with my eyesight but being that I had to wait 6 months for a referral letter to a lung specialist because I can't breathe I don't imagine she will think an inability to see is a medical emergency do you?
I truely appreciate all the support all of you have given me but I agree with Quix...I am flogging a dead horse! But it's my life and I am still not well so I can't just forget about it...maybe I should talk to a lawyer but I am afraid that I would be completely blackballed by this neurology "Gang" we seem to have in our province.
I am Frustrated beyond explanation right now!
Rena
I went to see the neuro at the university (Dr. W.) even though I had seen him years before (he originally diagnosed me with MS) and I was not fussy about him then but the pain was so bad I had to see someone! He diagnosed me has having Paratrigeminal Neuralgia (PN) and strangely he agree to treat me for this as long as I agreed to see NO ONE ELSE regarding this. I found this strange at the time but who was I to disagree when he had the relief I was needing and was holding it over my head like a worm on a hook??? He treated me with IV steroids and weaning prednisone and insisted that I take 6 weeks off of work. This was the beginning of the end of my job and I still wonder if I would have been able to return to work after a couple of weeks after the treatment.
Anyway, about a week later, Dr. M's receptionist called to ask if I wanted to make an appointment? I said no, I have been seen by Dr. W. at the university and he diagnosed me with (PN) and he will only treat me for it if I don't see anyone else about it so I won't be coming back for the time being. And that was the undoing of my life for the last 16 months!
In November of 2007 I was still seeing Dr. W (bonehead) and he finally did the first MRI since I first saw him in 1993! He only did it because I presented with 10 consecutive days of vertical double blindness and I pretty much insisted on it. The result came back that I do have MS (well duh) and perhaps I should seek out a second opinion. I was dropped by him like a hot potato. Truthfully I didn't mind getting away from him because I feel that he is not necessarily capable of treating patients anymore due to his age...he apparently was overdosing me on several meds and when asked about it he told me to stop them all cold turkey! I have a history of seizures and stopping those meds is not an option,.
Anyway, in the meantime I had asked my gp to help me go back to see Dr. M. She said that she had spoken to Dr. M. and that she wasn't sure that Dr. M. would agree to see me with the way I had walked away from her care the last time. I explained to her that Dr. W. insisted that I don't see anyone else about the (PN) and that is why I didn't go back to her...I was only doing what I was told. My gp said that she would try to plead my case and write her a letter but she said that she was not impressed! I did get to see Dr, M. once though in November. She basically told me that my MS is in-active and that she would not be seeing me anymore unless it is an emergency and even then I have to go through my gp. I told her that my gp has told me straight out that she knows nothing about MS but Dr. M. didn't seem too concerned. Dr. M. sent one letter to Dr. Z, my gp, and being that Dr. Z knows nothing about MS she goes strictly by what Dr. M. stated in that one letter and will listen to nothing else. She simply says that Dr. M. stated that your disease is in-active so there is no reason to go there.
So yeah...Tammy there is something wrong with this picture! I feel like the picked on girl in the junior high locker room and Dr. M is the big bully making my life miserable. I am still trying to get a new dr. but it is really hard. I am going to see if my gp will find a neuropthalmologist for me to help with my eyesight but being that I had to wait 6 months for a referral letter to a lung specialist because I can't breathe I don't imagine she will think an inability to see is a medical emergency do you?
I truely appreciate all the support all of you have given me but I agree with Quix...I am flogging a dead horse! But it's my life and I am still not well so I can't just forget about it...maybe I should talk to a lawyer but I am afraid that I would be completely blackballed by this neurology "Gang" we seem to have in our province.
I am Frustrated beyond explanation right now!
Rena
I don't really think it has anything to do with being in Canada, at all.....Or on Mars, actually....
There is something wrong with this picture....This doctor probably needs to find a new profession or something is missing from her brain.....
There is not one valid reason to deny someone that was diagnosed with "definite" MS with the DMD's....Not one.....
Like I said, there is definitely something wrong with this picture.....
There is something wrong with this picture....This doctor probably needs to find a new profession or something is missing from her brain.....
There is not one valid reason to deny someone that was diagnosed with "definite" MS with the DMD's....Not one.....
Like I said, there is definitely something wrong with this picture.....
I don't get it. If your "ability to see" is deteriorating, (NOT your eyesight), then how is that not evidence of activity? Why would your doctor want to abuse his/her power in this way? Even if the doc thinks you disease is inactive, there can be no certainty, so why impose this? Are you in Canada or on Mars?
But I agree with the above, instead of trying to get around the roadblock this doctor has put in front of your treatment, just get around to a new doctor! I hope that is possible in your situation, and if not, I hope you can find help to get the ball rolling.
But I agree with the above, instead of trying to get around the roadblock this doctor has put in front of your treatment, just get around to a new doctor! I hope that is possible in your situation, and if not, I hope you can find help to get the ball rolling.
I think so too. Ditch the neuro. Even if she is billed as an MS specialist. A doctor's job is to help you feel better, and you're not being helped.
phooey.
I don't understand why they used the word "active" when the entire rest of the paper states that treatment shouldn't be based on attacks. Attacks are symptoms. But, you are likely right about the reaction your neuro will have.
Personally I think it is time to stop flooging a dead horse and get with a new doctor. Certainly the care can't be worse.
It sounds to me like this neuro is carrying out a very personal vendetta against you to keep you from getting adequate treatment. I can think of no other explanation.
Quix
I don't understand why they used the word "active" when the entire rest of the paper states that treatment shouldn't be based on attacks. Attacks are symptoms. But, you are likely right about the reaction your neuro will have.
Personally I think it is time to stop flooging a dead horse and get with a new doctor. Certainly the care can't be worse.
It sounds to me like this neuro is carrying out a very personal vendetta against you to keep you from getting adequate treatment. I can think of no other explanation.
Quix
When I called she said that she did receive the letter and she will be contacting me in the future but there is a long waiting list so it would be a while...how long a while is I don't know...long enough to croak of whatever it is that is causing me an inability to breath I suppose eh? he he he
ARRRRRGHHHH!!!
ARRRRRGHHHH!!!
Ok - ok, I get it, and am with you on the words all the way -
BUT Rena Girl tell me, you are not going to give up on this that easy are you, huh, huh, are you??????
I dare you - I double dog dare you!
Come on, lets keep wrestling this beast! Any lawyers in the house? They can split and mince words better than the best of us!
Yay for the lung ref. FINALLY! Waaaay too long for that one.
xoxoxo
SL
BUT Rena Girl tell me, you are not going to give up on this that easy are you, huh, huh, are you??????
I dare you - I double dog dare you!
Come on, lets keep wrestling this beast! Any lawyers in the house? They can split and mince words better than the best of us!
Yay for the lung ref. FINALLY! Waaaay too long for that one.
xoxoxo
SL
Hey Sweetie, how long to you have to wait? Now I wonder if she has gotten to the other letters? I agree with you Honey, it is absolute ******** to have waited this long for this referral. Damn Dr anyway!!!!
Love Ya,
Ada
Love Ya,
Ada
Well I finally got in touch with the lung dr. office and ...drum roll please...they have received a referral letter from my gp that I have been asking her to do since January 2008! Hmmm only 6 months...not bad I guess but now I am in for a long waiting list to see this lung dr. so lets hope that it's not lung cancer or anything...I don't want to have to only see this dr on my death bed!
ABSOLUTE B.S. I SAY!!! Arrrrrgh!
Rena
ABSOLUTE B.S. I SAY!!! Arrrrrgh!
Rena
The problem of course is the definition of active vs. inactive. As far as I know, there's no such thing as 'inactive' or 'benign' MS. It's a description that's useful after the person's death, during autopsy, but not while the patient is alive and experiencing symptoms.
So the goal of any further examination would be to prove that your disease is active. If you're having new symptoms, then I would say it's active. But what do I know? I guess it's going to be up to your neuro-optha and you to prove it's active.
So the goal of any further examination would be to prove that your disease is active. If you're having new symptoms, then I would say it's active. But what do I know? I guess it's going to be up to your neuro-optha and you to prove it's active.
After carefully reading over this Concensus, unfortunately I have come across a word that I believe will be my downfall in my quest for the DMD's.
In the second bulleted paragraph it states, and I quote:
"Initiation of treatment with an interferon beta medication or glatiramer acetate should be considered as soon as possible following a definite diagnosis of MS with ACTIVE, relapsing disease, and may also be considered for selected patients with a first attack who are at high risk of MS."
The word ACTIVE is capitalized because as you know my "ms specialist" has stated specifically that my disease is "IN-ACTIVE" and therefore she would simply be showing me the door after reading this. I do appreciate your efforts but I really don't think that this is going to help unless I have something to back it up.
Again, I appreciate all the studying and searching that you do for me Quix and if I thought that this would work I would use it but you know as well as I do that my dr. is not going to budge on this word whatsoever right?
Lots of Hugs and a few tears,
Rena
In the second bulleted paragraph it states, and I quote:
"Initiation of treatment with an interferon beta medication or glatiramer acetate should be considered as soon as possible following a definite diagnosis of MS with ACTIVE, relapsing disease, and may also be considered for selected patients with a first attack who are at high risk of MS."
The word ACTIVE is capitalized because as you know my "ms specialist" has stated specifically that my disease is "IN-ACTIVE" and therefore she would simply be showing me the door after reading this. I do appreciate your efforts but I really don't think that this is going to help unless I have something to back it up.
Again, I appreciate all the studying and searching that you do for me Quix and if I thought that this would work I would use it but you know as well as I do that my dr. is not going to budge on this word whatsoever right?
Lots of Hugs and a few tears,
Rena
OH, I can't wait to see this "TOOL" when it's complete! I'd like pics too or at least a full blown decription of what you do with it, and where you put it! LOL!!!!
You keep building that arsenol girl. Unethical is just the tip of what withholding these meds means.
I'm so very proud of you. Onward!
-SL
You keep building that arsenol girl. Unethical is just the tip of what withholding these meds means.
I'm so very proud of you. Onward!
-SL
I would take this to the Dr and go "AHHHH, HAAAA!!! What is your excuse this time?" and if they are still denied I would threaten to take the info all the way to a malpractice suit. Now wouldn't that get ya a nice little boat? I'm so glad that Quix got this info for you. Now go kick that Dr's but-tinsky. :)
Love Ya,
Ada
Love Ya,
Ada
You go girl!! Go in there and kick some butt. I don't understand why they would withhold medication when you have been DX. It's your body and your life. How could they do that? I would sue their pants off. They are causing you to cause more damage to yourself by withholding.
You are a woman to be reckoned with and I appreciate that you have given me the tools to make me one as well!
I have an appointment with my gp on Monday where I am going to request that she make an appointment with my "MS Specialist" to look into my failing ability to see (as opposed to failing eyesight). My ability to see has deteriorated considerably in the last 5 months and I believe that it is time to call this doctor to the table and have her explain this loss despite the tests results of an Opthamologist that was seen twice. This Opthalmologist has stated at two separate appointments that my increased problems with my vision are not related to my eyesight but to "something neurological and since you have MS I am of the mind that MS is the cause."
Thank you again Quix for your unquestionable desire to assist people in any way that you can! I am not the only one that has benefitted from your abilities and I think I can speak for all of us here on the Forum...Thankyou just doesn't say enough.
Respectfully and Thankfully,
Rena
I have an appointment with my gp on Monday where I am going to request that she make an appointment with my "MS Specialist" to look into my failing ability to see (as opposed to failing eyesight). My ability to see has deteriorated considerably in the last 5 months and I believe that it is time to call this doctor to the table and have her explain this loss despite the tests results of an Opthamologist that was seen twice. This Opthalmologist has stated at two separate appointments that my increased problems with my vision are not related to my eyesight but to "something neurological and since you have MS I am of the mind that MS is the cause."
Thank you again Quix for your unquestionable desire to assist people in any way that you can! I am not the only one that has benefitted from your abilities and I think I can speak for all of us here on the Forum...Thankyou just doesn't say enough.
Respectfully and Thankfully,
Rena
I think Rena should just sue and get rich...lol
Thanks Quix for putting this up for Rena, her neuro needs a good kick in the pants.
Christine
(un-dx)
Thanks Quix for putting this up for Rena, her neuro needs a good kick in the pants.
Christine
(un-dx)
Nice work! I'm with you, one would hope that these concepts are universal in patient care.
db
db
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