Aa
And the verdict is.....
Well went to see my neuro again today. He asked me what has been going on. I told him about the stiffness in my upper leg. He had me walk for him, checked my reflexes, and told me that my VER/VEP results were normal. HE then went on to say well I guess I will see you back in three months.
He did say that the stiffness is probably due to the massive spasms I was having last month. And just blew off the pressure and pain I had in my rib cage. Told me that it passed so no need to worry, he did explain to me that my diaphram and liver is there so if I have trouble breathing then I need to contact him.
He is always so rushed. I stopped him and told him to talk to me. I said, what kind of diagnosis do I have at this point? He said early MS, but it he wants to see more lesions before he starts me on the meds, because the meds don't help in the early stages. WHAT!!!!! I told him that doesn't make sense because the meds are suppose to help with preventing more lesions so that I don't become disabled any sooner than nessary. He said that it is too early to start the meds and told me that if I get worse before now and the three months then I need to call him asap.
Is anyone as confused as I am with this? I mean isn't it better to start the meds sooner than later? Is he right or just being a complete idiot?
I guess the good news is that I got a diagnosis, but the bad is he wants to wait to start the meds.
Thanks for listening,
Paula
He did say that the stiffness is probably due to the massive spasms I was having last month. And just blew off the pressure and pain I had in my rib cage. Told me that it passed so no need to worry, he did explain to me that my diaphram and liver is there so if I have trouble breathing then I need to contact him.
He is always so rushed. I stopped him and told him to talk to me. I said, what kind of diagnosis do I have at this point? He said early MS, but it he wants to see more lesions before he starts me on the meds, because the meds don't help in the early stages. WHAT!!!!! I told him that doesn't make sense because the meds are suppose to help with preventing more lesions so that I don't become disabled any sooner than nessary. He said that it is too early to start the meds and told me that if I get worse before now and the three months then I need to call him asap.
Is anyone as confused as I am with this? I mean isn't it better to start the meds sooner than later? Is he right or just being a complete idiot?
I guess the good news is that I got a diagnosis, but the bad is he wants to wait to start the meds.
Thanks for listening,
Paula
Thanks Sarah,
Yeah I am still confused as to what to think about it all. It is kind of a relief to have him finally give a name to what I have, but then I don't know what to think about him saying it is too early to start the meds. I guess we will just wait and see what comes of everything.
I go back to see him in December and he mentioned another LP and MRI but we'll see what he does when I go.
Thank you
Paula
Yeah I am still confused as to what to think about it all. It is kind of a relief to have him finally give a name to what I have, but then I don't know what to think about him saying it is too early to start the meds. I guess we will just wait and see what comes of everything.
I go back to see him in December and he mentioned another LP and MRI but we'll see what he does when I go.
Thank you
Paula
Hi Paula
Nothing ever seems to be straightforward with MS and the more posts we all read, the more probelms seem to surface.
I was trying to think how I would feel after your appointmnet today and I just kept getting mixed feelings...sort of relief, defintely irritation and anger about the treatment but the main feeling was frustration and exasperation. You are probably still so numb from it all that your real feelings have not arisen yet...and allow yourself time. I also felt worried having read of other people's experiences about getting other opinions that it could go two ways..and you may see another neuro who disagrees and tries to take the dx away as poor Red has experienced.
Anyhow, just listen to your inner voice, keep strong and do what you feel is best.
With love and support
Sarah x
Hi Paula,
I too am at the same exact place that you are. My last neuro appt I outright asked him what he thought was wrong with me after these past 7 years. He finally said the "MS" words. I was really stunned because I had diagnosed myself 6 years ago, when he always said it was stress etc.
Anyway, I told him that the ophthalmologist I had just seen put in her letter to him MS. He told me if I applied for any new insurance, not to list her as a physician because my insurance would go up.
I totally understood what he was saying, because I do not want my insurance to go up right now, since it just did anyway.
Over the past 6 years, I did get second and third opinions from neurologist including the last one at The Cleveland Clinic 3 years ago in which they said I did not have MS.
I am sticking with my first neurologist because now we are on the same page, he is treating all my symptoms, and I just do not want to go through "the whole medical history again."
I do think it is the insurance companies causing us--the patients, the doctors a whole lot of grief.
terri
I too am at the same exact place that you are. My last neuro appt I outright asked him what he thought was wrong with me after these past 7 years. He finally said the "MS" words. I was really stunned because I had diagnosed myself 6 years ago, when he always said it was stress etc.
Anyway, I told him that the ophthalmologist I had just seen put in her letter to him MS. He told me if I applied for any new insurance, not to list her as a physician because my insurance would go up.
I totally understood what he was saying, because I do not want my insurance to go up right now, since it just did anyway.
Over the past 6 years, I did get second and third opinions from neurologist including the last one at The Cleveland Clinic 3 years ago in which they said I did not have MS.
I am sticking with my first neurologist because now we are on the same page, he is treating all my symptoms, and I just do not want to go through "the whole medical history again."
I do think it is the insurance companies causing us--the patients, the doctors a whole lot of grief.
terri
Sumanadevii,
Thank you for your support. I will fight and fight, I am not a quiter I am just having a moment because of my visit with the neuro yesterday.
Thanks again,
Paula
Thank you for your support. I will fight and fight, I am not a quiter I am just having a moment because of my visit with the neuro yesterday.
Thanks again,
Paula
You said you hoped you would get treatment before being in a wheelchair. If you don't want that to happen, you are going to have to do the battles of all battles.
I gave in. After so many doctors not finding anything, I had no choice but use the wheelchair. How humiliating it was to me. At fifty six years old in a wheelchair for a pinched nerve. My legs wouldn't hold me. No one would listen to me. Luckily, I had the fortitude to make myself move with a walker at home.
Please don't let this happen to you. Fight with all your might.
I gave in. After so many doctors not finding anything, I had no choice but use the wheelchair. How humiliating it was to me. At fifty six years old in a wheelchair for a pinched nerve. My legs wouldn't hold me. No one would listen to me. Luckily, I had the fortitude to make myself move with a walker at home.
Please don't let this happen to you. Fight with all your might.
Ren,
Thank you for your input. I have thought and thought about this all day. Heck it is 12am and I am not in bed asleep. I am usually asleep by 11 at the latest. But I will rest soon. I am just trying to wrap my head around all of this.
And no worries you didn't upset me. I am pretty much numb from everything today. But I am keeping my head up.
Thank you
Paula
Thank you for your input. I have thought and thought about this all day. Heck it is 12am and I am not in bed asleep. I am usually asleep by 11 at the latest. But I will rest soon. I am just trying to wrap my head around all of this.
And no worries you didn't upset me. I am pretty much numb from everything today. But I am keeping my head up.
Thank you
Paula
I'm sorry you didn't get the welcome basket to MS complete with DMDs but at least you are in the neighborhood. You have a name for your illness and now the last hurdle will be to get another neuro to weigh in and prescribe those DMDs so you can get treatment early.
Even if your doc is being audited, has he not thought of the potential damage to your nervous system? I bet a pharmaceutical audit and overrun of prescriptions is still cheaper than one failure to diagnose and treatment lawsuit. I am NOT advocating that you file a law suit but I wonder what his reaction would be to that question.
I hope I did not upset you after you had just gotten settled with today's news. That wasn't my intent, I just should have posted earlier in the day.
I hope you rest well and remember we are here anytime that roller coaster takes you for a ride.
Hugs,
Ren
Even if your doc is being audited, has he not thought of the potential damage to your nervous system? I bet a pharmaceutical audit and overrun of prescriptions is still cheaper than one failure to diagnose and treatment lawsuit. I am NOT advocating that you file a law suit but I wonder what his reaction would be to that question.
I hope I did not upset you after you had just gotten settled with today's news. That wasn't my intent, I just should have posted earlier in the day.
I hope you rest well and remember we are here anytime that roller coaster takes you for a ride.
Hugs,
Ren
I just read through all your wonderful comments again after I have had time to let everything sink in and am ok now.
I will work on finding a new neruologist even if I have to drive 4 hours to see one. I have only checked on ones around here, havent really checked out of my area.
My sisters neuro doesn't take my insurance, so that is out of the question.
I am almost to the point of letting what happens happen. I am tired of being stress about what is going on with me. Either I have MS or I don't. I will find out one day, just hope it isn't when I am disabled and in a wheel chair.
Once again thank you everyone for your wonderful comments :)
Paula
I will work on finding a new neruologist even if I have to drive 4 hours to see one. I have only checked on ones around here, havent really checked out of my area.
My sisters neuro doesn't take my insurance, so that is out of the question.
I am almost to the point of letting what happens happen. I am tired of being stress about what is going on with me. Either I have MS or I don't. I will find out one day, just hope it isn't when I am disabled and in a wheel chair.
Once again thank you everyone for your wonderful comments :)
Paula
Thank you everyone for your responses. I am just confused right now, I don't know what to think. I will get through this. I went out for a nice dinner with my son. I joined weight watchers today, gotta do something to help with the weight gain from the lyrica. Not to mention make myself feel better.
Thanks again for all your input.
Paula
Thanks again for all your input.
Paula
I got the "you have MS but it really has to develop" from half a dozen Neurologists over two years. I think it is the insurance companies scaring Doctors from treating MS until they are absolutely sure. In the future Doctors will shake their heads.
It will be a little weird for awhile. I still wake up and wonder if I really have MS like it is a bad dream I will wake up from.
Alex
It will be a little weird for awhile. I still wake up and wonder if I really have MS like it is a bad dream I will wake up from.
Alex
i have been suspecting for awhile why it seems some doc.'s particularily in the states are so reluctant at diagnosing m.s. that it could have something to do with insurance practices.
how can it be allowed that they can be selectively audited dependent on the amount of diagnoses the doctor makes!!?? that should be made entirely illegal. seriously, perhaps we should start a global campaign against the policy. something sure smells rotten in the state of denmark alright.
paula, i wish i could give you a giant hug right now. sounds to me like you have both a diagnosis and a reason for the delay in getting one.
i think your neuro knew for a long, long time you've had m.s. and for similar reasons of not wanting to put you on meds yet, he held off in telling you. i'd be pretty upset right now with him if i were you, but i guess conflicted at the same time, cause i'm sure you are grateful that atleast now you have finally been told.
i would get hard at work researching the benefits of going on dmd's early on in the disease, and also i would research exactly what qualifies for "early ms". it seems to me you've progressed quite a bit over the years and i'm not sold that that constitutes as early m.s.
anyway, i would gather this research, perhaps try to get a few separate neuro's to weigh in on it...could your sister's neuro provide you with any help in this department?--so, after having gathered it i would schedule an appt. with your neuro to discuss it all.
go at it with the slant that you had lots of time to think about it and are genuinely worried about not getting started on the dmd's--if that is indeed how you feel.
i would also ask him directly for a second opinion if he can't help you with what you decide and find out.
wow!! big news for you today hun!!!!!!
treat yourself to something nice tonight...bubble bath, great movie, glass of wine...whatever you enjoy and be in touch!!!!!
as always, thinking of you!!!!!
xoxoxoxoxoxo michelle
how can it be allowed that they can be selectively audited dependent on the amount of diagnoses the doctor makes!!?? that should be made entirely illegal. seriously, perhaps we should start a global campaign against the policy. something sure smells rotten in the state of denmark alright.
paula, i wish i could give you a giant hug right now. sounds to me like you have both a diagnosis and a reason for the delay in getting one.
i think your neuro knew for a long, long time you've had m.s. and for similar reasons of not wanting to put you on meds yet, he held off in telling you. i'd be pretty upset right now with him if i were you, but i guess conflicted at the same time, cause i'm sure you are grateful that atleast now you have finally been told.
i would get hard at work researching the benefits of going on dmd's early on in the disease, and also i would research exactly what qualifies for "early ms". it seems to me you've progressed quite a bit over the years and i'm not sold that that constitutes as early m.s.
anyway, i would gather this research, perhaps try to get a few separate neuro's to weigh in on it...could your sister's neuro provide you with any help in this department?--so, after having gathered it i would schedule an appt. with your neuro to discuss it all.
go at it with the slant that you had lots of time to think about it and are genuinely worried about not getting started on the dmd's--if that is indeed how you feel.
i would also ask him directly for a second opinion if he can't help you with what you decide and find out.
wow!! big news for you today hun!!!!!!
treat yourself to something nice tonight...bubble bath, great movie, glass of wine...whatever you enjoy and be in touch!!!!!
as always, thinking of you!!!!!
xoxoxoxoxoxo michelle
Paula,
I echo what Lulu said. My neuro admitted to me he was being audited (the process was started by a couple insurance companies) so he needed more proof than his gut feeling I have MS. Once my second bout of vertigo, and a VEP showed a 2 millisecond delay increase in 4 months time, he gave me the option of starting DMD. He also said I'm in early MS, and hopes the DMD will keep me in early MS for years to come.
I'm thinking your neuro doesn't want to think outside the box, doesn't trust his gut, or is not as informed as he should be...or all three. Or like Lulu said, maybe he is just a dufus.
Can you tell your neuro that you would like a second opinion and ask him to refer you? Would that get around the insurance and the 2 year rule?
I'm sorry Paula :-(
I hope something gets figured out soon!
~Jess
I echo what Lulu said. My neuro admitted to me he was being audited (the process was started by a couple insurance companies) so he needed more proof than his gut feeling I have MS. Once my second bout of vertigo, and a VEP showed a 2 millisecond delay increase in 4 months time, he gave me the option of starting DMD. He also said I'm in early MS, and hopes the DMD will keep me in early MS for years to come.
I'm thinking your neuro doesn't want to think outside the box, doesn't trust his gut, or is not as informed as he should be...or all three. Or like Lulu said, maybe he is just a dufus.
Can you tell your neuro that you would like a second opinion and ask him to refer you? Would that get around the insurance and the 2 year rule?
I'm sorry Paula :-(
I hope something gets figured out soon!
~Jess
I don't understand why he won't prescribe the DMDs. As you say, they're best at preventing damage early, before more lesions are acquired. So yes, he's being a complete idiot. I have no idea how to deal with that sort of idiot... but maybe somebody else will!
I'm sorry you are going through this neuro 'don't know' period right now. I am a little jaded about them right now. Is there a neighboring town and even a city where you can get a second opinion?
Maybe calling this doc and leaving a message that you prefer to start treatment now.
I think he knows you have it but doesn't want to deal with the paperwork to get treatment for you or something.
Here is a neuro type of message to a patient.
"well, you may have 'early pregnancy' but it could be alot of other things. So come back in 6 months and we will see how you are then", if a baby comes out-then we will know for sure"....
Hugs, Red
Maybe calling this doc and leaving a message that you prefer to start treatment now.
I think he knows you have it but doesn't want to deal with the paperwork to get treatment for you or something.
Here is a neuro type of message to a patient.
"well, you may have 'early pregnancy' but it could be alot of other things. So come back in 6 months and we will see how you are then", if a baby comes out-then we will know for sure"....
Hugs, Red
Thanks Lulu,
I am not sure what to make of this whole thing. He said it is early MS but to early to start meds. I am so not understanding that.
I have tried to get second opions, but the trouble I have is that the ones who take my insurance aren't taking new patients and the other docs in his practice won't see me because I am an established patient of his. I have to stop seeing him for 2 years before they will see me.
It is kinda of a relief to finally have a diagnosis, but now I have to get worse before he will prescribe any DMD's which makes no sense. But I will survive.
Thanks,
Paula
I am not sure what to make of this whole thing. He said it is early MS but to early to start meds. I am so not understanding that.
I have tried to get second opions, but the trouble I have is that the ones who take my insurance aren't taking new patients and the other docs in his practice won't see me because I am an established patient of his. I have to stop seeing him for 2 years before they will see me.
It is kinda of a relief to finally have a diagnosis, but now I have to get worse before he will prescribe any DMD's which makes no sense. But I will survive.
Thanks,
Paula
Wow, Paula .... welcome up over the mountain, sort of! You got the dx, sort of. If only you could just sort of have MS when you felt like it!!!
It sounds to me like this neuro is under the gun from insurance companies to keep his rx rate reduced. I understand that they do keep track and sometimes audit prescription practices with doctors looking for specific cost saving methods and/or abuses.
What a dufus!!!
Can you say second opinion ? I would get one and leave this neuro's practice.
Sorry to hear you have MS, sort of! That's sort of MS and not a sort of Sorry.
hugs, Lulu
It sounds to me like this neuro is under the gun from insurance companies to keep his rx rate reduced. I understand that they do keep track and sometimes audit prescription practices with doctors looking for specific cost saving methods and/or abuses.
What a dufus!!!
Can you say second opinion ? I would get one and leave this neuro's practice.
Sorry to hear you have MS, sort of! That's sort of MS and not a sort of Sorry.
hugs, Lulu
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