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Q? When Dx with MS what did your Doctor tell you?
Hi, I have a few Q? for all of those, who have been "officially" Dx w/ MS.
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
What information did he/she tell you or give you, about MS?
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
Did your doctor refer you, to any support groups or websites?
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Please relate your experiences.
Thank you for your time, consideration, and cooperation, I truly appreciate it.
Take care and God bless.
-- Socrates2k1
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
What information did he/she tell you or give you, about MS?
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
Did your doctor refer you, to any support groups or websites?
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Please relate your experiences.
Thank you for your time, consideration, and cooperation, I truly appreciate it.
Take care and God bless.
-- Socrates2k1
I've told my story before so forgive me to those who've heard it, but I'll keep it short - since it was so very short.
I had had symptoms and lesions etc. for years that no one had told me about nor done anything about. I was in the hospital for something else, since by the time I was dx with MS, I carried several serious diagnoses. A neuro, who I didn't even remember who she was, walked into my room and literally said "Well - you have a slam dunk diagnosis of MS - it can't get any more certain than your results. Here is a list of four different medications you could take. You can look them up on the internet and decide which you want - then call my office and we'll get you set up with the drug. We'll schedule a follow up visit in a few months" Then she turned and left. I thought when I went for my appt she'd tell me all these things about MS etc. but she said NOTHING. She said my situation - having Systemic Sclerosis, and blah blah blah - it was too hard to tell what was causing what. She said I didn't need MRIs more than once a year at most and she'd see me about once a year. She left and I thought I'd die. It was a very lonely disappointing experience. I had one more appt with her and tried to push her for info, and she said "Jan, I'm afraid all I can say is that you need fairy dust" !!! I'm serious. She did try to see if I could see an MS specialist she knew, but I was turned down. I never went back. So, I'm on my own with my primary.
I hope everyone has better experiences than mine! I send blessings, Jan
I had had symptoms and lesions etc. for years that no one had told me about nor done anything about. I was in the hospital for something else, since by the time I was dx with MS, I carried several serious diagnoses. A neuro, who I didn't even remember who she was, walked into my room and literally said "Well - you have a slam dunk diagnosis of MS - it can't get any more certain than your results. Here is a list of four different medications you could take. You can look them up on the internet and decide which you want - then call my office and we'll get you set up with the drug. We'll schedule a follow up visit in a few months" Then she turned and left. I thought when I went for my appt she'd tell me all these things about MS etc. but she said NOTHING. She said my situation - having Systemic Sclerosis, and blah blah blah - it was too hard to tell what was causing what. She said I didn't need MRIs more than once a year at most and she'd see me about once a year. She left and I thought I'd die. It was a very lonely disappointing experience. I had one more appt with her and tried to push her for info, and she said "Jan, I'm afraid all I can say is that you need fairy dust" !!! I'm serious. She did try to see if I could see an MS specialist she knew, but I was turned down. I never went back. So, I'm on my own with my primary.
I hope everyone has better experiences than mine! I send blessings, Jan
I think if I had a choice to go to any of these neuros for my MS, I would probably pick doublevision1's. He seemed to be the most thorough. Except for of course the process problem of not being able to start your DMDs immediately.
And after reading other people's experiences, I feel a little gypped by my neuro. But on the upside, he diagnosed me on my first visit to him.
-Kelly
And after reading other people's experiences, I feel a little gypped by my neuro. But on the upside, he diagnosed me on my first visit to him.
-Kelly
For me, one big "draw back" to having been Dx'd w/ MS, and subsequently not being able to return to work, was the loss of Medical Insurance. Yes, I was awarded Social Security Disability, retroactive to January 2010 (actually awarded in May 2010). However, there is a two year waiting period, before I'm eligible for Medicare, so my health insurance coverage (from my work) ended in October 2009. So, I have to wait until January 2012, before I'm eligible for Medicare, to have Medical coverage. Yes, I do qualify for Medicaid (in my state of KS), however, I have to spend $6,000, "out of my pocket" (on medical expenses), before Medicaid will pay any of my medical bills. Heck, I didn't pay that much, on medical insurance, for my family, when I was working. Now, with both my wife and I, on Social Security Disability, i.e. "fixed or limited income", we barely get enough to pay bills and live on, we don't have an extra $6,000 to spend on medical expenses, etc., in order for Medicaid to "kick in".
[Note: again, not a "woe is me", simply stating facts]
I have to give my Neurologist credit though, he did all the needed tests (MRI's, Spinal Tap, VEP test, blood work, etc.), and I was actually diagnosed rather quickly, compared to most people, I have spoken to, in this forum. From my accident in July 2009 to December 2009, that's 5 months, from suspicion to diagnosis, pretty good, huh.
I can honestly tell you, I still don't know much about MS.
I still don't really understand, what constitutes a "flair up"
I do know, about every possible symptom, that has been associated w/ MS, I have had, at some point in time.
Yes, it may be "something to look into", when I have medical health coverage again, meaning seeing a different Neurologist, but I can tell you, my Neurologist, has been dealing with patients, w/ MS, for 30 years now, so I believe he knows what he's talking about, when it comes to diagnosing a patient.
FYI, I was not initially told, by my Neurologist, that I had MS, he told my wife instead, and showed her the MRI (w/ over 17 lesions), then the Spinal Tap and blood work, and follow up MRI, helped confirm his diagnosis.
My subsequent "follow-up" appointments, seem to be pointless.
I tell him, what is happening, and he nods his head (and says, "uh-huh", a lot).
Then he will ask me a few Q? and when I answer, he nods his head (and says, "uh-huh", some more).
So, I have done lots of "Internet research", on my own about MS, including the health pages, here on this site.
Though, I have experienced many symptoms, first-hand, I still don't know what to expect, if my experiences are what most experience, or simply unique to me, if you know what I mean.
I go back to see my Neurologist, in February (yes, I know, I stated I have no medical insurance, it will cost me, about $50, out of my pocket, to see him), and perhaps he will be able to tell me more. I know, he probably would like to see me more often, but hey, he doesn't have to figure out, how to pay the bill, huh.
[Note: again, not a "woe is me", simply stating facts]
I was curious, about each of your experiences, thank you, and God bless you all, for sharing, I appreciate it, sincerely.
-- Socrates2k1
[Note: again, not a "woe is me", simply stating facts]
I have to give my Neurologist credit though, he did all the needed tests (MRI's, Spinal Tap, VEP test, blood work, etc.), and I was actually diagnosed rather quickly, compared to most people, I have spoken to, in this forum. From my accident in July 2009 to December 2009, that's 5 months, from suspicion to diagnosis, pretty good, huh.
I can honestly tell you, I still don't know much about MS.
I still don't really understand, what constitutes a "flair up"
I do know, about every possible symptom, that has been associated w/ MS, I have had, at some point in time.
Yes, it may be "something to look into", when I have medical health coverage again, meaning seeing a different Neurologist, but I can tell you, my Neurologist, has been dealing with patients, w/ MS, for 30 years now, so I believe he knows what he's talking about, when it comes to diagnosing a patient.
FYI, I was not initially told, by my Neurologist, that I had MS, he told my wife instead, and showed her the MRI (w/ over 17 lesions), then the Spinal Tap and blood work, and follow up MRI, helped confirm his diagnosis.
My subsequent "follow-up" appointments, seem to be pointless.
I tell him, what is happening, and he nods his head (and says, "uh-huh", a lot).
Then he will ask me a few Q? and when I answer, he nods his head (and says, "uh-huh", some more).
So, I have done lots of "Internet research", on my own about MS, including the health pages, here on this site.
Though, I have experienced many symptoms, first-hand, I still don't know what to expect, if my experiences are what most experience, or simply unique to me, if you know what I mean.
I go back to see my Neurologist, in February (yes, I know, I stated I have no medical insurance, it will cost me, about $50, out of my pocket, to see him), and perhaps he will be able to tell me more. I know, he probably would like to see me more often, but hey, he doesn't have to figure out, how to pay the bill, huh.
[Note: again, not a "woe is me", simply stating facts]
I was curious, about each of your experiences, thank you, and God bless you all, for sharing, I appreciate it, sincerely.
-- Socrates2k1
The first Neurologist to tell me I had MS just called me on the phone told me I had MS and that he was leaving town and needed to pick up my records his office was closing.
The next Neurologist took Diagnosis away then fired me for questioning her.
Third Neurologist confirmed I had MS after another year and a half of tests. He told me to pick a DMD. He then changed his mind thinking I had Lupus then changed his mind back to MS. He said he would only give me a DMD but not treat my symptoms. He basically said he was not interested in me until I could no longer walk.
On my own I called the MS Society and they sent me the book on the newly diagnosed and a bunch of literature in the knowledge is power series. I took a bunch of the workshops the first year including a great couple workshop.
My forth Neurologist said I had Primary Progressive. He has been the best and explaining things. If I call between my six month follow ups I get absolutely no response back.
Everything about MS I have learned on my own. My PCP treats all of my symptoms.
Alex
The next Neurologist took Diagnosis away then fired me for questioning her.
Third Neurologist confirmed I had MS after another year and a half of tests. He told me to pick a DMD. He then changed his mind thinking I had Lupus then changed his mind back to MS. He said he would only give me a DMD but not treat my symptoms. He basically said he was not interested in me until I could no longer walk.
On my own I called the MS Society and they sent me the book on the newly diagnosed and a bunch of literature in the knowledge is power series. I took a bunch of the workshops the first year including a great couple workshop.
My forth Neurologist said I had Primary Progressive. He has been the best and explaining things. If I call between my six month follow ups I get absolutely no response back.
Everything about MS I have learned on my own. My PCP treats all of my symptoms.
Alex
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
He told me I had MS, but not "currently active for lack of enhancing lesions".
What information did he/she tell you or give you, about MS? He explained demyelination, the McDonald Criteria, flairs, possible symptoms. He then gave me a pamphlet on Rebif and ordered it by phone.
What did he/she tell you to look forward to, in the "short-term" and "long-term"? Just to contact him if any new symptoms arise or get worse.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)? No.
Did your doctor refer you, to any support groups or websites? No.
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise? He told me to call him or the neuro on call if it were a weekend.
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions? Yes (see above).
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living
Advanced care directives
w/ MS? I'm crazy about my general neuro, and he's genuinely concerned for me. We haven't discussed Advanced Directives, though I know I should go ahead and do that myself. It's really very easy - fill out the paperwork, get it notarized.
When your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
Cofirmed that I had RRMS as per the preliminary dx of the neurologists on-call who examined me a few weeks earlier.
What information did he/she tell you or give you, about MS?
Explained how he came to the dx based on the MacDonald criteria - talked about dissemination in time and space, multiple relapses, MRI and LP results.
Discussed the parts of my CNS affected by MS based on MRI and clinical signs.
Described the disease process.
Talked about treatments available and coverage of treatment for MS patients in Alberta. Said I should research carefully and discuss with him and or his nurse to come to my own decision about which treatment to pursue.
He then had me meet immediately afterwards with his nurse who talked about the disease process in greater detail, T-cells and blood brain barrier and immune response and all that stuff, as well as more detail about treatment.
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
I asked if there was a chance I had so-called benign MS; he truthfully responded that this is only a small % of patients with MS and cannot be predicted in any case; can only be considered in hindsight because the disease course that any individual patient will have is unknown.
I asked what he thought the chances were that my double vision would resolve; again truthfully responded there was no way to know. He had pts whose double vision resolved in days, weeks, months, and others who never recovered normal vision. He told me there was no surgery or treatment to fix it - also true (eventually I did recover).
He said he believed outcomes for MS patients will be better in years to come because of DMDs.
Said he doesnt routinely order follow up MRIs after diagnosis unless signs of unexpected clinical worsening, though is open to discussion if I wanted one.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
He gave me info on a few clinical studies he was leading after asking if I thought I would be interested - I was. He gave me the contact info for the study coordinator. He stated my treatment decision should take priority over any possible participation in a study.
His nurse gave me a binder and DVDs with info on MS as well as all the first line DMDs. She also did a depression screening (part of the process for considering the interferon meds) and gave me a form for non-group coverage needed in order to qualify for MS drug program.
One frustration with this part of the process was that while waiting for that paperwork to get processed, I wanted to proceed with DMD immediately once I had a chance to read the literature, and they wouldnt support it until the non-group coverage was in place. I talked till I was blue in the face that I had 90% coverage already through my employer plan and could afford the co-pay, but she was totally resistent, kept asking me what if for some reason I dodnt qualify for the other plan (even though she said no one is ever turned down). I said if that happens, I am still going ahead with a DMD covered by my employer plan. She stressed that commitment to treatment is so important, patients dont do well when they go on and off. I suspiciously thought she must be making assumptions about our financial status our benefits at work, as I could not convince her that finances were not an issue. I realize I looked like crap that day - bad hair, no makeup, old faded jeans, and my husband with his long hair and tattoos, perhaps we didnt fit her stereotype of what professionals should look like. It was like she didnt get it or believe it when I said do not worry about me, I CAN afford it!!
Did your doctor refer you, to any support groups or websites?
MS Society of Alberta, MS Society of Canada
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
Said to call his office if experiencing a relapse which he described as any new symptom, or worsening of ongoing or previous symptom, that lasts more than 48 hours.
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
As per above, plus said to call his nurse if any questions in general about MS, treatment decision, etc. Suggested we meet again after I had time to review the literature to discuss treatment decision.
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Yes although as he is such an even keeled, hard to read person, and maybe because he is an academic type, it wasnt a warm and fuzzy thing but not cold and abrupt either. He was respectful, seemed interested in my well being and was open to my questions. He isnt arrogant and didnt talk down to me. He was and is willing to treat my symptoms but is most definitely not a pill pusher. He always wants me on as few meds as possible. He recommended I try things like yoga for overall well being. He offered info about clinical studies but didnt push it on me, focusing on my treatment decision first.
He also gave me the choice of whether I wanted to be followed by him, one of the on-call neuros I saw a few weeks earlier, or the neuro I saw the previous year when I had my first symptom Lhermittes. I chose him as he is a practicing MS specialist at a MS clinic at a major teaching hospital and also a professor and researcher; the others I saw are general neuros. I point this out for two reasons: one, that this demonstrates respect of his patients - his ego wouldnt be bruised if I went elsewhere nor did he try to pawn me off; and two, to refute the mistaken assumption that in Canada, the government controls our health decisions including which doctor we can see, which is untrue but something I notice said again and again by some U.S. politicians and media.
Cofirmed that I had RRMS as per the preliminary dx of the neurologists on-call who examined me a few weeks earlier.
What information did he/she tell you or give you, about MS?
Explained how he came to the dx based on the MacDonald criteria - talked about dissemination in time and space, multiple relapses, MRI and LP results.
Discussed the parts of my CNS affected by MS based on MRI and clinical signs.
Described the disease process.
Talked about treatments available and coverage of treatment for MS patients in Alberta. Said I should research carefully and discuss with him and or his nurse to come to my own decision about which treatment to pursue.
He then had me meet immediately afterwards with his nurse who talked about the disease process in greater detail, T-cells and blood brain barrier and immune response and all that stuff, as well as more detail about treatment.
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
I asked if there was a chance I had so-called benign MS; he truthfully responded that this is only a small % of patients with MS and cannot be predicted in any case; can only be considered in hindsight because the disease course that any individual patient will have is unknown.
I asked what he thought the chances were that my double vision would resolve; again truthfully responded there was no way to know. He had pts whose double vision resolved in days, weeks, months, and others who never recovered normal vision. He told me there was no surgery or treatment to fix it - also true (eventually I did recover).
He said he believed outcomes for MS patients will be better in years to come because of DMDs.
Said he doesnt routinely order follow up MRIs after diagnosis unless signs of unexpected clinical worsening, though is open to discussion if I wanted one.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
He gave me info on a few clinical studies he was leading after asking if I thought I would be interested - I was. He gave me the contact info for the study coordinator. He stated my treatment decision should take priority over any possible participation in a study.
His nurse gave me a binder and DVDs with info on MS as well as all the first line DMDs. She also did a depression screening (part of the process for considering the interferon meds) and gave me a form for non-group coverage needed in order to qualify for MS drug program.
One frustration with this part of the process was that while waiting for that paperwork to get processed, I wanted to proceed with DMD immediately once I had a chance to read the literature, and they wouldnt support it until the non-group coverage was in place. I talked till I was blue in the face that I had 90% coverage already through my employer plan and could afford the co-pay, but she was totally resistent, kept asking me what if for some reason I dodnt qualify for the other plan (even though she said no one is ever turned down). I said if that happens, I am still going ahead with a DMD covered by my employer plan. She stressed that commitment to treatment is so important, patients dont do well when they go on and off. I suspiciously thought she must be making assumptions about our financial status our benefits at work, as I could not convince her that finances were not an issue. I realize I looked like crap that day - bad hair, no makeup, old faded jeans, and my husband with his long hair and tattoos, perhaps we didnt fit her stereotype of what professionals should look like. It was like she didnt get it or believe it when I said do not worry about me, I CAN afford it!!
Did your doctor refer you, to any support groups or websites?
MS Society of Alberta, MS Society of Canada
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
Said to call his office if experiencing a relapse which he described as any new symptom, or worsening of ongoing or previous symptom, that lasts more than 48 hours.
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
As per above, plus said to call his nurse if any questions in general about MS, treatment decision, etc. Suggested we meet again after I had time to review the literature to discuss treatment decision.
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Yes although as he is such an even keeled, hard to read person, and maybe because he is an academic type, it wasnt a warm and fuzzy thing but not cold and abrupt either. He was respectful, seemed interested in my well being and was open to my questions. He isnt arrogant and didnt talk down to me. He was and is willing to treat my symptoms but is most definitely not a pill pusher. He always wants me on as few meds as possible. He recommended I try things like yoga for overall well being. He offered info about clinical studies but didnt push it on me, focusing on my treatment decision first.
He also gave me the choice of whether I wanted to be followed by him, one of the on-call neuros I saw a few weeks earlier, or the neuro I saw the previous year when I had my first symptom Lhermittes. I chose him as he is a practicing MS specialist at a MS clinic at a major teaching hospital and also a professor and researcher; the others I saw are general neuros. I point this out for two reasons: one, that this demonstrates respect of his patients - his ego wouldnt be bruised if I went elsewhere nor did he try to pawn me off; and two, to refute the mistaken assumption that in Canada, the government controls our health decisions including which doctor we can see, which is untrue but something I notice said again and again by some U.S. politicians and media.
Hi jensequitur,
Would you mind to let me know who is your doctor with MS clinic over at UTSW in Dallas? Did you just call in and make an appointment?
Thanks.
Would you mind to let me know who is your doctor with MS clinic over at UTSW in Dallas? Did you just call in and make an appointment?
Thanks.
Like Bob, my neuro (at the same MS Center as his) wanted to watch and wait to see how many lesions I was getting and at what rate. Because of this, he also suggested that I wait to start Copaxone, but gave me the choice to decide for myself. He did tell me that he didn't really like the other DMDs, because of the flu-like symptoms associated with them.
He did wonder who the neuro was that I had been seeing before him. He seemed disappointed in the care I was given and the lack of diagnosis. Especially, when he could Dx me on the first day that he saw me.
He did wonder who the neuro was that I had been seeing before him. He seemed disappointed in the care I was given and the lack of diagnosis. Especially, when he could Dx me on the first day that he saw me.
When your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
Just how many lesions he found on my previous MRIs when he looked them over (I had switched from my old neuro to an MS Center to see if they could figure me out). And what he found when he examined my eyes – pale discs and afferent pupillary defect.
What information did he/she tell you or give you, about MS?
He just said that I’d have the RRMS and he thought that I should start taking Copaxone.
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Didn’t mention anything about it.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
Nothing was given to me.
Did your doctor refer you, to any support groups or websites?
He didn’t tell me about any support groups or websites.
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
No.
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
No.
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Hmmm, I can’t say for sure on this one. I guess he cares. ???
Just how many lesions he found on my previous MRIs when he looked them over (I had switched from my old neuro to an MS Center to see if they could figure me out). And what he found when he examined my eyes – pale discs and afferent pupillary defect.
What information did he/she tell you or give you, about MS?
He just said that I’d have the RRMS and he thought that I should start taking Copaxone.
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Didn’t mention anything about it.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
Nothing was given to me.
Did your doctor refer you, to any support groups or websites?
He didn’t tell me about any support groups or websites.
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
No.
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
No.
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Hmmm, I can’t say for sure on this one. I guess he cares. ???
• When your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
Mine started with ON. When I was going through the diagnostic process, my doctor told me that my symptoms might indicate MS. I had one lesion on my MRI and an abnormal VEP. He suggested a spinal tap, so I had one and it had ZERO o-bands. He asked if I was OK watching and waiting for 6 months and doing another MRI. I was fine with that and about 4 months later developed TN. The second MRI had more lesions and showed decreased size in my right optic nerve and my left optic tract. After that we talked. My partner and I talked and then the Neuro and I talked again. That was when we decided a diagnosis and DMDs would be the best bet for maintaining my eye sight.
• What information did he/she tell you or give you, about MS?
He asked if I had questions, but for the most part I knew what demyelination was and what I could expect. I'd already found this forum and the National MS site, so I figured I was pretty well informed.
• What did he/she tell you to look forward to, in the "short-term" and "long-term"?
My Neuro and I have no clue what the short term and long term issues may be. I;m older and male with no O-bands. That may be a bad thing. I started Copaxone pretty early (less than a year after the first symptoms. That may be a good thing. I still drive (I do have some vision issues, so I drive less at night.) I still work...full time, with global travel. I limit myself (with a Drs. recommendation) to 50 hours a week and frequent breaks. My company treats it as an ADA accommodation. I wobble and fall over sometimes, so I keep a small backpacking cane with me.
• Did your doctor give you any information (ex. pamphlets, printouts, etc.)? Nope
• Did your doctor refer you, to any support groups or websites? Nope
• Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
Yes. We discussed relapse and what I should do if I thought I was in a relapse or thought one was occurring. For the most part it involved calling him or someone else at the MS center and getting set up for IVSM ASAP. Other than that, he'll see you in a year.
• Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
Yes. Either him or someone else in the RMMS center
• Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Yes, we kind of talked about what was going on and the increasing number of lesions and my fear of loosing my vision. I seem to have more sensory and less motor issues than some. My work and my vision kind of led to the decision to diagnose and treat rather than continuing to watch and wait for another 6 months. I have to say that I always seemed to be part of the process and not a victim of the process.
Bob
Mine started with ON. When I was going through the diagnostic process, my doctor told me that my symptoms might indicate MS. I had one lesion on my MRI and an abnormal VEP. He suggested a spinal tap, so I had one and it had ZERO o-bands. He asked if I was OK watching and waiting for 6 months and doing another MRI. I was fine with that and about 4 months later developed TN. The second MRI had more lesions and showed decreased size in my right optic nerve and my left optic tract. After that we talked. My partner and I talked and then the Neuro and I talked again. That was when we decided a diagnosis and DMDs would be the best bet for maintaining my eye sight.
• What information did he/she tell you or give you, about MS?
He asked if I had questions, but for the most part I knew what demyelination was and what I could expect. I'd already found this forum and the National MS site, so I figured I was pretty well informed.
• What did he/she tell you to look forward to, in the "short-term" and "long-term"?
My Neuro and I have no clue what the short term and long term issues may be. I;m older and male with no O-bands. That may be a bad thing. I started Copaxone pretty early (less than a year after the first symptoms. That may be a good thing. I still drive (I do have some vision issues, so I drive less at night.) I still work...full time, with global travel. I limit myself (with a Drs. recommendation) to 50 hours a week and frequent breaks. My company treats it as an ADA accommodation. I wobble and fall over sometimes, so I keep a small backpacking cane with me.
• Did your doctor give you any information (ex. pamphlets, printouts, etc.)? Nope
• Did your doctor refer you, to any support groups or websites? Nope
• Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
Yes. We discussed relapse and what I should do if I thought I was in a relapse or thought one was occurring. For the most part it involved calling him or someone else at the MS center and getting set up for IVSM ASAP. Other than that, he'll see you in a year.
• Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
Yes. Either him or someone else in the RMMS center
• Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Yes, we kind of talked about what was going on and the increasing number of lesions and my fear of loosing my vision. I seem to have more sensory and less motor issues than some. My work and my vision kind of led to the decision to diagnose and treat rather than continuing to watch and wait for another 6 months. I have to say that I always seemed to be part of the process and not a victim of the process.
Bob
Before I begin to answer your questions, I believe you deserve better than you are receiving from your neuro. I hope you begin a search and land with one that is listening to you and answering your questions.
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you? She actually sent my husband to tell me but I was already prepared to hear it.
What information did he/she tell you or give you, about MS? I told her that at this point, I probably knew as much as she did about MS ...I had found this site about six months before being dxed.
What did he/she tell you to look forward to, in the "short-term" and "long-term"? She refused to talk about "if's". She wanted to work aggressively (her words) to bring things under control.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)? I was given a nice big fat book about Rebif.
Did your doctor refer you, to any support groups or websites? No. She understood I had already been searching.
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise? She told me she was available 24/7 and not to hesitate to call.
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS? Yes and I liked that she was listening to ME. I like that she has never forgotten what I told her I needed.
I have a lot of respect for this woman. I wish all our MSers could have a neuro just like her.
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you? She actually sent my husband to tell me but I was already prepared to hear it.
What information did he/she tell you or give you, about MS? I told her that at this point, I probably knew as much as she did about MS ...I had found this site about six months before being dxed.
What did he/she tell you to look forward to, in the "short-term" and "long-term"? She refused to talk about "if's". She wanted to work aggressively (her words) to bring things under control.
Did your doctor give you any information (ex. pamphlets, printouts, etc.)? I was given a nice big fat book about Rebif.
Did your doctor refer you, to any support groups or websites? No. She understood I had already been searching.
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise? She told me she was available 24/7 and not to hesitate to call.
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS? Yes and I liked that she was listening to ME. I like that she has never forgotten what I told her I needed.
I have a lot of respect for this woman. I wish all our MSers could have a neuro just like her.
• When your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
When I was going through the diagnostic process, my doctor told me that my symptoms indicated MS. However, the McDonald criteria required a positive spinal tap (he said) and so I had to get that done as well. Most painful experience ever, aside from my blood clot. Now that I know a little more, I realize that the symptoms plus the positive MRI was enough for a diagnosis.
• What information did he/she tell you or give you, about MS?
Very little. I told him my symptoms, half of which he discounted as being within the norm. (Including my confusion and complete right leg numbness.)
• What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Neuro gave me no real information about MS at all. He did tell me that MS damage could cover a wide range of symptoms, but he seemed to be focused on the conventional ones - tingling, numbness, weakness.
• Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
• Did your doctor refer you, to any support groups or websites?
• Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
• Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
That's a big no to all of these.
• Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Yes, actually - despite his ignorance about MS, he did exhibit concern when I went in for flareups I was having.
My regular neurologist, aside from the fact that he diagnosed me, has been inconsistent when it comes to proper treatment of MS. All DMDs should be tracked with regular MRIs, for example. I only got one when I had new symptoms - and my neuro didn't pay attention to whether the clinic had a .7T machine or a 3T machine. Betaseron users should have a blood test every six months - no mention of that by my regular neuro. My neuro didn't write down in my clinical records when I had a flare. The records were actually very spare - the only information in them was the negative .7T MRI, which really irked me.
I didn't really find this out until I requested to be seen by the MS clinic over at UTSW in Dallas. I had a really nice, informative visit with the MS specialist there, and found out a lot of information. She scheduled me for an OCT and visual acuity test, and talked about what the results of my 3T MRI meant. Even better, she pulled up the MRI and pointed to areas in my brain so I could understand what I was looking at.
So I'm not dumping my old neuro. He's in town, and I'll need somebody to call to get my prescriptions filled and deal with the hassles. But I'm glad I'm also seeing a neuro who understands MS better.
One thing the MS specialist mentioned was that my MRI showed a relatively light lesion load for the amount of symptoms I was having. That's why she scheduled me for the optical coherence tomography (OCT) - it's to check the thickness of my optic nerve. Well, I glanced at the screen and saw some green, some blue, and a lot of red and yellow. There were a couple of spots that were white. I'm not sure what that means - I'll find out in March!
When I was going through the diagnostic process, my doctor told me that my symptoms indicated MS. However, the McDonald criteria required a positive spinal tap (he said) and so I had to get that done as well. Most painful experience ever, aside from my blood clot. Now that I know a little more, I realize that the symptoms plus the positive MRI was enough for a diagnosis.
• What information did he/she tell you or give you, about MS?
Very little. I told him my symptoms, half of which he discounted as being within the norm. (Including my confusion and complete right leg numbness.)
• What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Neuro gave me no real information about MS at all. He did tell me that MS damage could cover a wide range of symptoms, but he seemed to be focused on the conventional ones - tingling, numbness, weakness.
• Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
• Did your doctor refer you, to any support groups or websites?
• Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
• Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
That's a big no to all of these.
• Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Yes, actually - despite his ignorance about MS, he did exhibit concern when I went in for flareups I was having.
My regular neurologist, aside from the fact that he diagnosed me, has been inconsistent when it comes to proper treatment of MS. All DMDs should be tracked with regular MRIs, for example. I only got one when I had new symptoms - and my neuro didn't pay attention to whether the clinic had a .7T machine or a 3T machine. Betaseron users should have a blood test every six months - no mention of that by my regular neuro. My neuro didn't write down in my clinical records when I had a flare. The records were actually very spare - the only information in them was the negative .7T MRI, which really irked me.
I didn't really find this out until I requested to be seen by the MS clinic over at UTSW in Dallas. I had a really nice, informative visit with the MS specialist there, and found out a lot of information. She scheduled me for an OCT and visual acuity test, and talked about what the results of my 3T MRI meant. Even better, she pulled up the MRI and pointed to areas in my brain so I could understand what I was looking at.
So I'm not dumping my old neuro. He's in town, and I'll need somebody to call to get my prescriptions filled and deal with the hassles. But I'm glad I'm also seeing a neuro who understands MS better.
One thing the MS specialist mentioned was that my MRI showed a relatively light lesion load for the amount of symptoms I was having. That's why she scheduled me for the optical coherence tomography (OCT) - it's to check the thickness of my optic nerve. Well, I glanced at the screen and saw some green, some blue, and a lot of red and yellow. There were a couple of spots that were white. I'm not sure what that means - I'll find out in March!
Well -During my dx process, I only saw my neuro for about 20 minutes and was dx by my PA (in consult with the neuro of course) so my answers relate to my physician's assistant:
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
I had researched MS (my sis had been dx with cis) - so I knew a lot about the disease already by the time I was dx. MY PA basically told me I had serious things going on that looked like MS (even though I wasn't clincially definitive) and said my neuro and another neuro they consulted with strongly recommended beginning on DMDs - He explained my MRI.s and what was happening in the brain, and the effect this could have - physicially, cognitvely and emotionally.
Suggested I take some time off from work - work was getting very difficult (teach first grade)
told me there were meds for the fatigue and other things that may occur as a result of having MS
What information did he/she tell you or give you, about MS?
I know when I asked about mimics (when we were in rule out process) he told me if I had to pick between MS and lupus - to go with ms
gave me info from drug manuf re MS - again - I already knew a lot from my sis
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
short term - get on therapy and may have to deal with side affects - long term - they don't know - can't predict - but said my case seemed pretty mild - but it was nothing to mess with - get on meds - told me to keep working out as I had been the best I could - may have to do less (was a runner) shorter less strenous workouts - by try to do something every day
Told me depression can occur and to get help for that (drugs and counseling as needed) - I was already seeing a therapist so he was happy about that. Told me not to discount the impact cogitivly - this is one of my difficulties with work (along with fatigue)
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
He gave me info re the therapies I could choose from and they all had info about MS.
Did your doctor refer you, to any support groups or websites?
Yes - educational program as well - as far as support groups - he pushed it but I wasn't interested
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
I asked how I would know if I needed to be seen and he said that if something wasn't working or symptoms changed and got worse - call
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
see above
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
My PA did for sure! I am very sad as he has left the practice to work in a hospital setting Any time I called he got right back to me, and would explain and discuss as long as I needed to. Very patient and understanding of the emotional part of this disease, and my difficulty in accepting that this was happening. Also encouraged me to remain as active as possible, recommended fun books to read (not just about MS) - tried to get me to realize that life needed to go on as usual to some degree.! Would also see me as needed initially - probably more often than was needed - because I was so afraid of this disease! Much more secure now.
. Now I have to see the neuro - had follow up MRI today - so I have to see neuro next week and I'm not looking forward to that. I just know that he is not going to care for me the same way the PA did!
Whey your Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
I had researched MS (my sis had been dx with cis) - so I knew a lot about the disease already by the time I was dx. MY PA basically told me I had serious things going on that looked like MS (even though I wasn't clincially definitive) and said my neuro and another neuro they consulted with strongly recommended beginning on DMDs - He explained my MRI.s and what was happening in the brain, and the effect this could have - physicially, cognitvely and emotionally.
Suggested I take some time off from work - work was getting very difficult (teach first grade)
told me there were meds for the fatigue and other things that may occur as a result of having MS
What information did he/she tell you or give you, about MS?
I know when I asked about mimics (when we were in rule out process) he told me if I had to pick between MS and lupus - to go with ms
gave me info from drug manuf re MS - again - I already knew a lot from my sis
What did he/she tell you to look forward to, in the "short-term" and "long-term"?
short term - get on therapy and may have to deal with side affects - long term - they don't know - can't predict - but said my case seemed pretty mild - but it was nothing to mess with - get on meds - told me to keep working out as I had been the best I could - may have to do less (was a runner) shorter less strenous workouts - by try to do something every day
Told me depression can occur and to get help for that (drugs and counseling as needed) - I was already seeing a therapist so he was happy about that. Told me not to discount the impact cogitivly - this is one of my difficulties with work (along with fatigue)
Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
He gave me info re the therapies I could choose from and they all had info about MS.
Did your doctor refer you, to any support groups or websites?
Yes - educational program as well - as far as support groups - he pushed it but I wasn't interested
Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
I asked how I would know if I needed to be seen and he said that if something wasn't working or symptoms changed and got worse - call
Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
see above
Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
My PA did for sure! I am very sad as he has left the practice to work in a hospital setting Any time I called he got right back to me, and would explain and discuss as long as I needed to. Very patient and understanding of the emotional part of this disease, and my difficulty in accepting that this was happening. Also encouraged me to remain as active as possible, recommended fun books to read (not just about MS) - tried to get me to realize that life needed to go on as usual to some degree.! Would also see me as needed initially - probably more often than was needed - because I was so afraid of this disease! Much more secure now.
. Now I have to see the neuro - had follow up MRI today - so I have to see neuro next week and I'm not looking forward to that. I just know that he is not going to care for me the same way the PA did!
That is kind of sad. I have a wonderful neurologist. I have received a diagnosis as "probable" MS based on symptoms, spinal tap and MRIs. I'm supposed to start drug therapy soon.
My doctor has been there every step of the way and has been very thorough with going over all my results and answering all my questions. She even gave me the information for an MS seminar that was being hosted by their office which was very informative.
She explained when I should call her versus seeing my internist and said I would be seeing her about every 6 months to track my condition. I couldn't ask for a better doctor.
If you aren't happy with your doctor and his bedside manner, you should certainly look for a new one. You need to trust and feel confident in your neurologist!
My doctor has been there every step of the way and has been very thorough with going over all my results and answering all my questions. She even gave me the information for an MS seminar that was being hosted by their office which was very informative.
She explained when I should call her versus seeing my internist and said I would be seeing her about every 6 months to track my condition. I couldn't ask for a better doctor.
If you aren't happy with your doctor and his bedside manner, you should certainly look for a new one. You need to trust and feel confident in your neurologist!
*Neurologist/Doctor Dx you w/ MS, what did your doctor tell you?
My doctor read my LP o-band results and said "positive MS." I being a smarty pants said, I thought there were not specific tests for MS, lol He corrected himself and said, the CSF was positive for o-bands, and then named everyother reason he could as to why he was dxing MS.
*What information did he/she tell you or give you, about MS?
My neuro described the disease process and what the demyelination does and what treatment hopes to do.
*What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Um, I can't be certain I was given a short or long term plan. Things kind of went appt. by appt. and basically needs based plans. He does make a point to tel me each appt. to workout.
*Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
Was given all the therapy information before making a decision. But nothing on MS in general.
*Did your doctor refer you, to any support groups or websites?
Not mentioned that I remember.
*Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
No
*Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
No.
*Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Not so much in advance of the dx or during. But seems caring enough on follow-ups.
*Please relate your experiences.
I use to think my follow up appointments post dx were like that movie 50 first dates with Drew Barrymore and Adam Sandler. Felt as if I had to remind him of what was going on last in order to update. Since then more is remembered and I'm comfortable with that now. My doc is very good in terms of offering me symptom relief but I don't always feel I'm offered my status in terms of comparision from visit to visit or yr. to year. Maybe it's because I look well and pass most all my testing, I just don't know.
Maybe it's because I wasn't a believer in my MS diagnosis early on, I just don't know. I was given it and did all I could do to disprove the Dr. I thought for sure I had a stroke and something went unnoticed.
In the end, I learned all I could learn about MS once my attack subsided - most all from here and then external sources which has made me more confident in where I'm at in this phase of my life.
I can relate to your position of feeling failed. Basically anything I learned that helped was through developing coping mechanisms I used to get through each minute of my days back in 07.
In hindsight, the lack of help produced those mechanisms have served me well because now I know what to- or not- to do in many scenarios. I use them daily now.
I hope this helps.....
-shell
My doctor read my LP o-band results and said "positive MS." I being a smarty pants said, I thought there were not specific tests for MS, lol He corrected himself and said, the CSF was positive for o-bands, and then named everyother reason he could as to why he was dxing MS.
*What information did he/she tell you or give you, about MS?
My neuro described the disease process and what the demyelination does and what treatment hopes to do.
*What did he/she tell you to look forward to, in the "short-term" and "long-term"?
Um, I can't be certain I was given a short or long term plan. Things kind of went appt. by appt. and basically needs based plans. He does make a point to tel me each appt. to workout.
*Did your doctor give you any information (ex. pamphlets, printouts, etc.)?
Was given all the therapy information before making a decision. But nothing on MS in general.
*Did your doctor refer you, to any support groups or websites?
Not mentioned that I remember.
*Did your doctor sit down, and tell you, what you should do, should particular symptoms arise?
No
*Did your doctor tell you, when to call him/her, when you have any particular symptoms or questions?
No.
*Did your doctor "seem" to genuinely care about you, as an individual, and want to help you in anyway, in living w/ MS?
Not so much in advance of the dx or during. But seems caring enough on follow-ups.
*Please relate your experiences.
I use to think my follow up appointments post dx were like that movie 50 first dates with Drew Barrymore and Adam Sandler. Felt as if I had to remind him of what was going on last in order to update. Since then more is remembered and I'm comfortable with that now. My doc is very good in terms of offering me symptom relief but I don't always feel I'm offered my status in terms of comparision from visit to visit or yr. to year. Maybe it's because I look well and pass most all my testing, I just don't know.
Maybe it's because I wasn't a believer in my MS diagnosis early on, I just don't know. I was given it and did all I could do to disprove the Dr. I thought for sure I had a stroke and something went unnoticed.
In the end, I learned all I could learn about MS once my attack subsided - most all from here and then external sources which has made me more confident in where I'm at in this phase of my life.
I can relate to your position of feeling failed. Basically anything I learned that helped was through developing coping mechanisms I used to get through each minute of my days back in 07.
In hindsight, the lack of help produced those mechanisms have served me well because now I know what to- or not- to do in many scenarios. I use them daily now.
I hope this helps.....
-shell
My answer, to this Q? is:
My Neurologist, simply told me, I had MS, and that he had a treatment (drug - Rebif), that would help me. He also told me, that I would never return to work, and that I would never be able to drive a motor vehicle again.
[Well, he was correct, I was never able to return to work, and have consequently been granted Social Security Disability, thank God]
[As far as driving, I didn't drive for about a year, until I had too, when my wife broke her left ankle, and someone had to drive her to the ER, home from surgery, and to subsequent doctor follow up appointments. However, I do not drive unless it's completely necessary]
I learned more, about MS, from the Rebif Representative RN that came to my home to show me how to give myself the shots. She told me (what my Neurologist failed to) that Rebif would not cure me, would not prevent "flair-ups" altogether, and could not reverse the damage. She told me, it was designed to slow down the progression of the disease, and therefore make "flair-ups" occur, less often.
So, basically, for myself, my Neurologist failed me, in practically every way, except Dx me w/ MS.
I guess he figured, (his work was done) the rest was up to me.
-- Socrates2k1
My Neurologist, simply told me, I had MS, and that he had a treatment (drug - Rebif), that would help me. He also told me, that I would never return to work, and that I would never be able to drive a motor vehicle again.
[Well, he was correct, I was never able to return to work, and have consequently been granted Social Security Disability, thank God]
[As far as driving, I didn't drive for about a year, until I had too, when my wife broke her left ankle, and someone had to drive her to the ER, home from surgery, and to subsequent doctor follow up appointments. However, I do not drive unless it's completely necessary]
I learned more, about MS, from the Rebif Representative RN that came to my home to show me how to give myself the shots. She told me (what my Neurologist failed to) that Rebif would not cure me, would not prevent "flair-ups" altogether, and could not reverse the damage. She told me, it was designed to slow down the progression of the disease, and therefore make "flair-ups" occur, less often.
So, basically, for myself, my Neurologist failed me, in practically every way, except Dx me w/ MS.
I guess he figured, (his work was done) the rest was up to me.
-- Socrates2k1
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