Aa
"Benign or In-active MS"
Dear Dr. Kantor:
I was diagnosed with MS in 1993 but fortunately my MS has been in "remission" until I began having problems in 2006. In Oct. 2006 I presented with an ice pick type of pain in my right temple with my left eyelid drooping. I was told that it was a relapse of my MS and was put on IV steroids with weaning prednisone which alleviated my symptoms until Feb. 2007. In Feb. 2007 I had another occurence of the "ice pick pain and drooping eyelid" but was diagnosed by a different Neurologist with Paratrigeminal Neuralgia (Raeders Syndrome) and was again treated with IV Steroids and weaning Prednisone. After this steroid treatment I continued to have the symptoms of the Raeder's Syndrome for which I tried several medications including Tegretol (which I have been on since 1993 as I presented with Grand Mal Seizures), Neurontin, Topamax and Lyrica with no resolution of the Raeder's Syndrome symptoms.
In July 2007 I began to have symptoms of MS such as leg spasms, vertical double vision, numbness and tingling in the left extremities, difficulty with speech, swallowing issues, chronic fatigue as well as the continuing pain of Raeder's. I was told by my Neurologist that my MRI showed that there were no changes to my scan however I didn't have an MRI until November 2007 and at that time was told to seek out a second opinion. I did seek a second opinion with my original Neurologist and she stated that "your MS is still in remission and there is no need for me to see you any longer...you can be followed by your gp and I wish you luck with your "in-active" MS.
I have had several tests done, have been seen by a Rheumatologist who discerned that my vitamin D level was very low for which I am taking supplements. I have had a neuro-psych consult and was diagnosed as being depressed and advised to start on an anti-depressant which I have done. Currently I have few complaints other than my eye sight seems to be deteriorating although my Opthamologist states that it is a neurological problem not my eyes. I have been told so many times that my disease is "in-active or benign" but there has been no other explanation found for my symptoms. In your experience, can MS be "in-active or benign" and require no follow up or possible DMD treatment?
I appreciate you taking the time to read this long history but I have had so many differing opinions from various sources I would like to hear it from another neurologist.
Sincerely,
Rena705
I was diagnosed with MS in 1993 but fortunately my MS has been in "remission" until I began having problems in 2006. In Oct. 2006 I presented with an ice pick type of pain in my right temple with my left eyelid drooping. I was told that it was a relapse of my MS and was put on IV steroids with weaning prednisone which alleviated my symptoms until Feb. 2007. In Feb. 2007 I had another occurence of the "ice pick pain and drooping eyelid" but was diagnosed by a different Neurologist with Paratrigeminal Neuralgia (Raeders Syndrome) and was again treated with IV Steroids and weaning Prednisone. After this steroid treatment I continued to have the symptoms of the Raeder's Syndrome for which I tried several medications including Tegretol (which I have been on since 1993 as I presented with Grand Mal Seizures), Neurontin, Topamax and Lyrica with no resolution of the Raeder's Syndrome symptoms.
In July 2007 I began to have symptoms of MS such as leg spasms, vertical double vision, numbness and tingling in the left extremities, difficulty with speech, swallowing issues, chronic fatigue as well as the continuing pain of Raeder's. I was told by my Neurologist that my MRI showed that there were no changes to my scan however I didn't have an MRI until November 2007 and at that time was told to seek out a second opinion. I did seek a second opinion with my original Neurologist and she stated that "your MS is still in remission and there is no need for me to see you any longer...you can be followed by your gp and I wish you luck with your "in-active" MS.
I have had several tests done, have been seen by a Rheumatologist who discerned that my vitamin D level was very low for which I am taking supplements. I have had a neuro-psych consult and was diagnosed as being depressed and advised to start on an anti-depressant which I have done. Currently I have few complaints other than my eye sight seems to be deteriorating although my Opthamologist states that it is a neurological problem not my eyes. I have been told so many times that my disease is "in-active or benign" but there has been no other explanation found for my symptoms. In your experience, can MS be "in-active or benign" and require no follow up or possible DMD treatment?
I appreciate you taking the time to read this long history but I have had so many differing opinions from various sources I would like to hear it from another neurologist.
Sincerely,
Rena705
I'm not sure what your apology is about; I can't imagine anyone was offended by your remark? Those of us who have known you for quite a while on this forum understand what you meant by that statement, and in no way would I interpret this to be a criticism of ALL medical professionals.
happy New Year to all.. Yes,we have MS but we try every day, MS not to have US.So lets enjoy a healthy 2009 and plenty Vitamin D normal levels :)
Don
******
Don
******
What you received from Dr.Kantor and what your statement meant was VALIDATION, and that is what you have been seeking for such a long time. Validation.
Please use that validation and find a new neuro so you can take the DMD's you need.
Let 2009 be a good year for you and everyone here.
Wanna :o)
Please use that validation and find a new neuro so you can take the DMD's you need.
Let 2009 be a good year for you and everyone here.
Wanna :o)
I would like to offer an apology to anyone I may have offended by the following quote regarding the answer I received from Dr. Kantor:
"got the answer I have been seeking for a very long time from a Medical Professional!"
Anyone that knows the history I have dealt with will know that I was speaking of people such as the "lying gp" and the "evil neuro" and in no way meant to insult or hurt anyone that has not dealt me a raw deal during this fiasco I have had to endure for the last year or so. I appreciate the help and knowledge I have gleaned from this forum and would not want to jeopardize my relationship with anyone who is a member by unknowingly hurting them. Please accept my sincere apology for any damage this statement may have caused.
Sincerely,
Rena
"got the answer I have been seeking for a very long time from a Medical Professional!"
Anyone that knows the history I have dealt with will know that I was speaking of people such as the "lying gp" and the "evil neuro" and in no way meant to insult or hurt anyone that has not dealt me a raw deal during this fiasco I have had to endure for the last year or so. I appreciate the help and knowledge I have gleaned from this forum and would not want to jeopardize my relationship with anyone who is a member by unknowingly hurting them. Please accept my sincere apology for any damage this statement may have caused.
Sincerely,
Rena
Heather: thanks for your comments. I'm only familiar with these processes in Alberta, so folks elsewhere in Canada will have different steps to follow. Some provinces require a particular insurance plan to be in place, while others do not. Some require the prescribing physician to be a "MS neurologist" while in others, a general neurologist is sufficient. The MS Society of Canada has good information on the requirements for every province and territory, for coverage of prescribed DMDs. I am very grateful for this coverage, as we all know how expensive these drugs are. And I am reassured by the fact that if I were to move to another province, my DMD would be still be covered, I just might have a different administrative process to follow. I would encourage any of the Canadian forum members here with suspected MS, do some research into this while awaiting a diagnosis. If it does turn out ot be MS, you will already be armed with the information you need to get the ball rolling on treatment.
Rena: I hope that with this info, you can save some time and hassle. I wish I had known about the need for non-group coverage for the MS drug program, while I was waiting to be seen by Dr. B. I could have had everything in place by the time I'd seen him. And like I say, if for some reason he doesn't prescribe a DMD for you, you can cancel the non-group coverage at any time.
Well my friend, stay bundled up and keep warm! Apparently this big chill is continuing for the next couple of weeks. Supposed to go up to -1 by mid-January though! I really hope they are right about that!
Rena: I hope that with this info, you can save some time and hassle. I wish I had known about the need for non-group coverage for the MS drug program, while I was waiting to be seen by Dr. B. I could have had everything in place by the time I'd seen him. And like I say, if for some reason he doesn't prescribe a DMD for you, you can cancel the non-group coverage at any time.
Well my friend, stay bundled up and keep warm! Apparently this big chill is continuing for the next couple of weeks. Supposed to go up to -1 by mid-January though! I really hope they are right about that!
Way to go! I haven't had much luck with ask-a-doctor, but you asked the right doctor, and got a great answer, way cool!
Speaking of cool, its up to a balmy 40 degrees down here in Portland OR, no wind chill to speak of. We did have some heavy rain yesterday, but that's nothing compared with what you Northern neighbors deal with. Brrrrrrrr!!!!!
I'm sending you some warm hugs,
Kathy
Speaking of cool, its up to a balmy 40 degrees down here in Portland OR, no wind chill to speak of. We did have some heavy rain yesterday, but that's nothing compared with what you Northern neighbors deal with. Brrrrrrrr!!!!!
I'm sending you some warm hugs,
Kathy
Well for starters honey...it's not a heck of a lot warmer "down south (he he)"...today it's -20 but -30 with the windchill and sounds like we will be bringing in a COLD New Year this year! Being that we are tough Albertans though we can handle it can't we!?! hehe
Thanks so much for all your advice my dear! I will contact Blue Cross and see if I can get that coverage and I will call Melissa as well. I have had to deal with the voice mail with Dr. W. as well so I know that persistence is the key in trying to speak directly to them. I appreciate you sharing your knowledge about this whole situation and hopefully it won't be long before I get to see the precious doctor. I will let you know what I hear as soon as I hear it and in the meantime I will get on the go with Blue Cross.
Thanks again for all the support and help that has been offered here and I hope that things will finally start to turn towards getting some help. My eyesight is really becoming a bother and I need to know if there is some help out there for me since the Opthalmologist seems to have "changed his mind" about my diagnosis. It doesn't change the fact that my sight is deteriorating and it is very frustrating.
So please try to stay warm up there and have a Very Happy New Year ok?!
Lots of Hugs,
Rena
Thanks so much for all your advice my dear! I will contact Blue Cross and see if I can get that coverage and I will call Melissa as well. I have had to deal with the voice mail with Dr. W. as well so I know that persistence is the key in trying to speak directly to them. I appreciate you sharing your knowledge about this whole situation and hopefully it won't be long before I get to see the precious doctor. I will let you know what I hear as soon as I hear it and in the meantime I will get on the go with Blue Cross.
Thanks again for all the support and help that has been offered here and I hope that things will finally start to turn towards getting some help. My eyesight is really becoming a bother and I need to know if there is some help out there for me since the Opthalmologist seems to have "changed his mind" about my diagnosis. It doesn't change the fact that my sight is deteriorating and it is very frustrating.
So please try to stay warm up there and have a Very Happy New Year ok?!
Lots of Hugs,
Rena
Your knowledge about the health care system up there in Canada is of huge help to Rena and all those we have on the Forum that are from Canada.
You go girl....I'm glad that you can direct people in Canada about the specifics. Those of us here in the U.S. are lost when it comes to the health care system up 'yonder'.
Great advice,
Heather
You go girl....I'm glad that you can direct people in Canada about the specifics. Those of us here in the U.S. are lost when it comes to the health care system up 'yonder'.
Great advice,
Heather
ps: we are freezing our butts off up here (minus 30's celsius!)! Is it any warmer down south ("south" being a relative term).
I too was very pleased and encouraged to read Dr. Kantor's response to your question. I hope you print it and take it to your first appt with Dr. B. Honestly, if he doesn't agree, based on everything you have shared with us thus far about your disease, I will be absolutely shocked. However I'm really really hopeful for you, because I can't imagine that Dr. B's response would be anything other than to agree that you need the opportunity to be treated with DMD's.
At my first appt with him, there was no discussion of whether or not to be treated; the only question was, which drug would I choose? (with no bias from him as to which one I should go on). Also, I asked Dr. B specifically about so-called "benign" MS during my frist meeting with him, I suppose with the naive hope that he would tell me this is what I have! His response was exactly as Dr. K and Dr. Q both put it: you can't predict a benign course; you can only determine this looking back, many years after diagnosis. So I know for sure that this is his professional opinion. So I am really feeling optimistic that things are going to turn around for you soon.
Make sure you do call the clinic early in the new year. If you get the clinic voice mail, keep calling back rather than leave a message. I did this and when I did finally get through, I talked directly to Melissa and she booked me right there and then, with an appt date within a few weeks.
Remember that if you are prescribed a DMD, Dr. B will need to bring forward an application on your behalf to the Alberta MS Drug Review Panel for approval (in order to have the cost covered). I was told this can take three months, but it took less than one month for me. You do need to apply for AB Blue Cross Non-Group coverage first ($41/month), and it's effective three months after your application.
You might consider applying for the non-group plan now (no one is denied, you just need your AHC to be eligible) and it would become effective in March/April. Hopefully by then you will have seen Dr. B and have an application for a DMD in the works. If this is not the case for some reason, you could cancel/suspend your Blue Cross application. They bill you after the fact so you wouldn't be out any money.
The advantage to doing it this way would be to expedite the process, once finally get your appt at the MS clinic; if Dr. B agrees to prescribe you treatment and bring an application forward for you, you wouldn't have to wait yet another 3 months to wait for AB Blue Cross to kick in. The clinic will direct you to apply for ther non-group anyway; wouldn't it be nice to tell them you already have it, or at least that it's already in the works.
Here's some more info, think I may have sent you this before, not sure:
www. ab. bluecross. ca/ dbl /pdfs /ahwdbl_sec2. pdf
www. ab. bluecross. ca/ individ3. html
Note that you do need to have the Blue Cross Non-Group coverage in place to be eligible for the provincial MS drug program, even if you already have a group plan with Blue Cross or another insurer (ie: through spouse's employer). The good news though, is that the plans do get linked, so between a group plan and a non-group plan, not only do you get your MS drug covered, but you will probably eliminate any prescription co-pay you may have, so you end up paying zero for any other prescriptions you have (this is how it worked out for me).
I hope I haven't made this out ot be too complicated! It was actually a very simple process for me. Let me know if this as clear as mud.
At my first appt with him, there was no discussion of whether or not to be treated; the only question was, which drug would I choose? (with no bias from him as to which one I should go on). Also, I asked Dr. B specifically about so-called "benign" MS during my frist meeting with him, I suppose with the naive hope that he would tell me this is what I have! His response was exactly as Dr. K and Dr. Q both put it: you can't predict a benign course; you can only determine this looking back, many years after diagnosis. So I know for sure that this is his professional opinion. So I am really feeling optimistic that things are going to turn around for you soon.
Make sure you do call the clinic early in the new year. If you get the clinic voice mail, keep calling back rather than leave a message. I did this and when I did finally get through, I talked directly to Melissa and she booked me right there and then, with an appt date within a few weeks.
Remember that if you are prescribed a DMD, Dr. B will need to bring forward an application on your behalf to the Alberta MS Drug Review Panel for approval (in order to have the cost covered). I was told this can take three months, but it took less than one month for me. You do need to apply for AB Blue Cross Non-Group coverage first ($41/month), and it's effective three months after your application.
You might consider applying for the non-group plan now (no one is denied, you just need your AHC to be eligible) and it would become effective in March/April. Hopefully by then you will have seen Dr. B and have an application for a DMD in the works. If this is not the case for some reason, you could cancel/suspend your Blue Cross application. They bill you after the fact so you wouldn't be out any money.
The advantage to doing it this way would be to expedite the process, once finally get your appt at the MS clinic; if Dr. B agrees to prescribe you treatment and bring an application forward for you, you wouldn't have to wait yet another 3 months to wait for AB Blue Cross to kick in. The clinic will direct you to apply for ther non-group anyway; wouldn't it be nice to tell them you already have it, or at least that it's already in the works.
Here's some more info, think I may have sent you this before, not sure:
www. ab. bluecross. ca/ dbl /pdfs /ahwdbl_sec2. pdf
www. ab. bluecross. ca/ individ3. html
Note that you do need to have the Blue Cross Non-Group coverage in place to be eligible for the provincial MS drug program, even if you already have a group plan with Blue Cross or another insurer (ie: through spouse's employer). The good news though, is that the plans do get linked, so between a group plan and a non-group plan, not only do you get your MS drug covered, but you will probably eliminate any prescription co-pay you may have, so you end up paying zero for any other prescriptions you have (this is how it worked out for me).
I hope I haven't made this out ot be too complicated! It was actually a very simple process for me. Let me know if this as clear as mud.
Thanks so much for sharing the response Dr. Kantor gave you. I was so hopeful that he would be able to steer you in the right direction or at least validate your "active" versus "benign" MS. You go girl!!!!!
Have a very Happy New Year. Whoohooo 2009 - Going to be a good year for you and the rest of us, hopefully.
Hugs,
Julie
Have a very Happy New Year. Whoohooo 2009 - Going to be a good year for you and the rest of us, hopefully.
Hugs,
Julie
I agree. I sure it is great hearing a real, honest-to-goodness professional say the words we have been hammering at you for lo' these months. I was incredibly pleased to hear him echo my sentiments about "benign MS."
I hope you didn't mind my butting in.
I hope this gives you the confidence to take your fight to the new neuro. You deserve a better shake and much better care.
Quix
I hope you didn't mind my butting in.
I hope this gives you the confidence to take your fight to the new neuro. You deserve a better shake and much better care.
Quix
Happy New Year to you too, Rena. I'm praying for you to get a good neuro in 2009 and start your DMD!!
Can't wait for you to be on here more, I miss you!!!
Hugs,
doni
Can't wait for you to be on here more, I miss you!!!
Hugs,
doni
Well I got my question copied and pasted over to the MS Doctor Forum and got the answer I have been seeking for a very long time from a Medical Professional!
The following is the reply I received from Dr. Kantor:
"I believe that "benign" MS is only a diagnosis you can make after a person has livd their entire MS life.
It doesn't sound like nothing is going on -- in fact your MS symptoms sound active.
1. I think you should see an MS specialist.
2. I feel that you should highly consider being on a DMD.
Ms should be treated, not left to simmer and get worse."
I would like to thank Quix for her input on my question but I think that Dr. Kantor has answered my question and he understood what I was looking for and for that I am grateful. I will call the neurologists office that I am to be referred to in the new year and ensure that they have received the letter from my gp and see if there is any indication as to when I might get in to see this new neurologist.
I would like to be able to say that I can see a light at the end of the tunnel but I am frightened to speak too soon. This has been a hellish 2 years of the medical profession not taking me seriously though and I figure that one can always hope can't one???
My friends here have helped me make it through the last year and for that I am forever grateful and will always be! I hope that in the new year I will be able to spend more time here helping others as well because I feel that being someone that has been through the journey from hell I can relate well to others that are struggling through the morass called an MS diagnosis.
I want to wish all here on the forum a Wonderful New Year and please know that when you feel that you have reached the end of your rope...please reach for us because we can help you make it over those mountains! I know that it can seem that there is never going to be an end to this long and lonely journey but those of us that have been there have a lot to offer that will help you along the way.
Lots of Hugs,
Rena
The following is the reply I received from Dr. Kantor:
"I believe that "benign" MS is only a diagnosis you can make after a person has livd their entire MS life.
It doesn't sound like nothing is going on -- in fact your MS symptoms sound active.
1. I think you should see an MS specialist.
2. I feel that you should highly consider being on a DMD.
Ms should be treated, not left to simmer and get worse."
I would like to thank Quix for her input on my question but I think that Dr. Kantor has answered my question and he understood what I was looking for and for that I am grateful. I will call the neurologists office that I am to be referred to in the new year and ensure that they have received the letter from my gp and see if there is any indication as to when I might get in to see this new neurologist.
I would like to be able to say that I can see a light at the end of the tunnel but I am frightened to speak too soon. This has been a hellish 2 years of the medical profession not taking me seriously though and I figure that one can always hope can't one???
My friends here have helped me make it through the last year and for that I am forever grateful and will always be! I hope that in the new year I will be able to spend more time here helping others as well because I feel that being someone that has been through the journey from hell I can relate well to others that are struggling through the morass called an MS diagnosis.
I want to wish all here on the forum a Wonderful New Year and please know that when you feel that you have reached the end of your rope...please reach for us because we can help you make it over those mountains! I know that it can seem that there is never going to be an end to this long and lonely journey but those of us that have been there have a lot to offer that will help you along the way.
Lots of Hugs,
Rena
Happy Holidays Rena,
Heather is right to direct you to the different forum to connect with Dr. Kantor. He will answer one question per day, courtesy of his arrangement with MedHelp. Additional replies after that one per day is $25.
I hope everyone understands his purpose here is not to ask patient specific questions about your diagnosis or care. Your own doctors should be seen for those answers.
I know your frustration in the dx process and the need to find an answer anywhere you can. I keep hoping for you - Lulu
Heather is right to direct you to the different forum to connect with Dr. Kantor. He will answer one question per day, courtesy of his arrangement with MedHelp. Additional replies after that one per day is $25.
I hope everyone understands his purpose here is not to ask patient specific questions about your diagnosis or care. Your own doctors should be seen for those answers.
I know your frustration in the dx process and the need to find an answer anywhere you can. I keep hoping for you - Lulu
I think you have to put this over on the doctor's page for him to answer. I also believe the fee is $25.00.
If you go to MedHelp's post introducing him, you will find the link to his page.
Big Hugs,
Heather
Merry Christmas!
If you go to MedHelp's post introducing him, you will find the link to his page.
Big Hugs,
Heather
Merry Christmas!
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