Re: No more doctors care - I am done even though I am still having problems?

[Guest guest]

This is more then weird, I can't even believe he's a doctor.  He was more into his extended vacation then his patients, you still need to find a new doctor, if they don't put you on something else before you go off the Pred. you will be sicker then you are now. 

I'm sure you said and I can't remember what I ate for lunch, where do you live? MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

Okay, the new news is as follows after meeting with my Neurologist today:

My optic nerve has permanent damage.

My facial palsy is the same or a little better.

I have a slight reduction of vision in my eye, along with a pupil problem due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30 this week. I told him, that since my vision is so low in the eye and we have not been able to get it anywhere near good - just keep on reducing the meds...as what use it to take medicine so I can have like no vision - I can't read with that eye - even at 200.

AND NOW>>>>>

He is on vacation from Nov 23rd until March....and that is it. No more appointments. He said that my eye doctor will determine what is going to happen. But he is not concerned with my taper off ...I should be just fine. If need be the eye doctor can refer me to an neur-ophthalmologist.

Is this right...what do I do now...I have been looking for someone for a second opinion...but what is the deal? Will I be fine - he said he has no concerns with me and tapering off - what happens now? Am I suppose to still be under doctor's care? This seems so weird to me, but what about to you guys?

Hope I explained it enough..help help help!

[Guest guest]

An immediate new doctor is in order. When I read posts like this i get very upset. You have to become proactive and find medical assistance. I only hope that there is a doctor out there who will take up your case and listen to you. I will keep you in my prayersMatt

Okay, the new news is as follows after meeting with my Neurologist today:

My optic nerve has permanent damage.

My facial palsy is the same or a little better.

I have a slight reduction of vision in my eye, along with a pupil problem due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30 this week. I told him, that since my vision is so low in the eye and we have not been able to get it anywhere near good - just keep on reducing the meds...as what use it to take medicine so I can have like no vision - I can't read with that eye - even at 200.

AND NOW>>>>>

He is on vacation from Nov 23rd until March....and that is it. No more appointments. He said that my eye doctor will determine what is going to happen. But he is not concerned with my taper off ...I should be just fine. If need be the eye doctor can refer me to an neur-ophthalmologist.

Is this right...what do I do now...I have been looking for someone for a second opinion...but what is the deal? Will I be fine - he said he has no concerns with me and tapering off - what happens now? Am I suppose to still be under doctor's care? This seems so weird to me, but what about to you guys?

Hope I explained it enough..help help help!

[Guest guest]

Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was

that. Remember that I have had tingling in my hands and feet telling me that it

was anxiety...I also got moon face, which is still there (down a bit now) and am

tapering off the pred. until Dec. 16th. Now nothing...he is just done with me?

What do I do...how do I get another doctor...I know that is a dumb question but

I am really confused now. He said he saw bumps or nodes on my brain...and my

vision is still very limited - going down as I am going down on the pred. He

thinks I will be fine...I guess...seriously is this weird or am I the one who

just doesn't know stuff?

>

> >

> >

> > Okay, the new news is as follows after meeting with my Neurologist today:

> >

> > My optic nerve has permanent damage.

> >

> > My facial palsy is the same or a little better.

> >

> > I have a slight reduction of vision in my eye, along with a pupil problem

> > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30

> > this week. I told him, that since my vision is so low in the eye and we have

> > not been able to get it anywhere near good - just keep on reducing the

> > meds...as what use it to take medicine so I can have like no vision - I

> > can't read with that eye - even at 200.

> >

> > AND NOW>>>>>

> >

> > He is on vacation from Nov 23rd until March....and that is it. No more

> > appointments. He said that my eye doctor will determine what is going to

> > happen. But he is not concerned with my taper off ...I should be just fine.

> > If need be the eye doctor can refer me to an neur-ophthalmologist.

> >

> > Is this right...what do I do now...I have been looking for someone for a

> > second opinion...but what is the deal? Will I be fine - he said he has no

> > concerns with me and tapering off - what happens now? Am I suppose to still

> > be under doctor's care? This seems so weird to me, but what about to you

> > guys?

> >

> > Hope I explained it enough..help help help!

> >

> >

> >

>

[Guest guest]

Madison, Dr. Brad Binlech. University of Wisconsin. He is great and very caring.

Jackie I can get you his number if you want. He comes to Mauston too.

Re: No more doctors care - I am done even though I am still having problems?

Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?> > >> >> > Okay, the new news is as follows after meeting with my Neurologist today:> >> > My optic nerve has permanent damage.> >> > My facial palsy is the same or a little better.> >> > I have a slight reduction of vision in my eye, along with a pupil problem> > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > this week. I told him, that since my vision is so low in the eye and we have> > not been able to get it anywhere near good - just keep on reducing the> > meds...as what use it to take medicine so I can have like no vision - I> > can't read with that eye - even at 200.> >> > AND NOW>>>>>> >> > He is on vacation from Nov 23rd until March....and that is it. No more> > appointments. He said that my eye doctor will determine what is going to> > happen. But he is not concerned with my taper off ...I should be just fine.> > If need be the eye doctor can refer me to an neur-ophthalmologist.> >> > Is this right...what do I do now...I have been looking for someone for a> > second opinion...but what is the deal? Will I be fine - he said he has no> > concerns with me and tapering off - what happens now? Am I suppose to still> > be under doctor's care? This seems so weird to me, but what about to you> > guys?> >> > Hope I explained it enough..help help help!> >> > > >>

[Guest guest]

Who is this jerk. He needs to be outed.

No more doctors care - I am done even though I am still having problems?

Okay, the new news is as follows after meeting with my Neurologist today:My optic nerve has permanent damage.My facial palsy is the same or a little better.I have a slight reduction of vision in my eye, along with a pupil problem due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30 this week. I told him, that since my vision is so low in the eye and we have not been able to get it anywhere near good - just keep on reducing the meds...as what use it to take medicine so I can have like no vision - I can't read with that eye - even at 200.AND NOW>>>>>He is on vacation from Nov 23rd until March....and that is it. No more appointments. He said that my eye doctor will determine what is going to happen. But he is not concerned with my taper off ...I should be just fine. If need be the eye doctor can refer me to an neur-ophthalmologist.Is this right...what do I do now...I have been looking for someone for a second opinion...but what is the deal? Will I be fine - he said he has no concerns with me and tapering off - what happens now? Am I suppose to still be under doctor's care? This seems so weird to me, but what about to you guys? Hope I explained it enough..help help help!

[Guest guest]

You are not weird. I know that it's hard for many of us to defy our doctors (even as a nurse, it took many years for me to overcome the "doctors are gods" syndrome), but some are just bozos. Heck, somebody had to be at the bottom of the class, right? Maybe it was this guy. I have known doctors over the years that didn't seem bright enough to graduate from high school, let alone medical school. It's probably divine intervention that this guy is taking an extended vacation; it will give you the opportunity (and excuse) to find someone else. Check into the doctor that Jackie recommended. Please don't delay; I'm very worried about your vision. You said that this departing neuro said your opthamalogist could refer you to a neuro-opthamalogist, so call & ask for that referral. I know I've about beaten this topic to death, but do you need an advocate to help you do these things? Often chronic or serious illness saps our energy & initiative; sarc is notorious for this. Plus you are likely affected by at least some degree of depression over the vision loss, so that can make it difficult to act. Now is the time; don't wait. And when you contact another doctor, don't let them give you an initial appt 2 months from now. It would be better for your opth. to contact a neuro-opth directly & request an immediate evaluation. These docs can always get someone in on an immediate basis. I actually got a same-day MRI & neurologist appt for a ruptured disc in my neck because I dragged myself into my family doctor's office (no appt) in obvious excruciating pain & broke into tears. I didn't plan that, but it was very effective because they knew it took a lot for me to cry. I had been unable to get an MRI or neuro eval until the following week, but these folks escorted me right into the office, grabbed the doctor to do a brief exam, he ordered the MRI & I was on my way. You have to be assertive, insistent & persistent, but not aggressive or threatening. If you can get the ear of a nurse or even office manager, they will often intervene with the doctor. Like Larry the Cable Guy says, "Let's git 'er done!"

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Wed, 27 Oct 2010 01:17:47 +0000> Subject: Re: No more doctors care - I am done even though I am still having problems?> > Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?> > > > > > >> > >> > > Okay, the new news is as follows after meeting with my Neurologist today:> > >> > > My optic nerve has permanent damage.> > >> > > My facial palsy is the same or a little better.> > >> > > I have a slight reduction of vision in my eye, along with a pupil problem> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > > this week. I told him, that since my vision is so low in the eye and we have> > > not been able to get it anywhere near good - just keep on reducing the> > > meds...as what use it to take medicine so I can have like no vision - I> > > can't read with that eye - even at 200.> > >> > > AND NOW>>>>>> > >> > > He is on vacation from Nov 23rd until March....and that is it. No more> > > appointments. He said that my eye doctor will determine what is going to> > > happen. But he is not concerned with my taper off ...I should be just fine.> > > If need be the eye doctor can refer me to an neur-ophthalmologist.> > >> > > Is this right...what do I do now...I have been looking for someone for a> > > second opinion...but what is the deal? Will I be fine - he said he has no> > > concerns with me and tapering off - what happens now? Am I suppose to still> > > be under doctor's care? This seems so weird to me, but what about to you> > > guys?> > >> > > Hope I explained it enough..help help help!> > >> > > > > >> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

No seriously, this is the Dr from Hell, you are on the right track, I have tingling in my hands and feet a lot too, sometimes they go numb completely, and I can even stand up, there was a time I couldn't even get out of bed, if left ignored who knows where I'd be today.

This is only the beginning, the doctors want to blow off Sarcoid, it will burn itself out, that's the old school of thinking, not the new.  Do you have a teaching hospital near by, that would be a good place to start, as more doctors are learning about the dangers of NeuroSarcoid, call them and see if they have a Neurologist you could see for a second opinion.  If you don't live near a teaching hosp. call your local hosp. and ask them for the name of there best Neuro, call and ask to talk to the nurses on the neuro unit, they will tell you who they think is the best as they work with them, and make an appt.  ASAP. 

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?

>

> >

> >

> > Okay, the new news is as follows after meeting with my Neurologist today:

> >

> > My optic nerve has permanent damage.

> >

> > My facial palsy is the same or a little better.

> >

> > I have a slight reduction of vision in my eye, along with a pupil problem

> > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30

> > this week. I told him, that since my vision is so low in the eye and we have

> > not been able to get it anywhere near good - just keep on reducing the

> > meds...as what use it to take medicine so I can have like no vision - I

> > can't read with that eye - even at 200.

> >

> > AND NOW>>>>>

> >

> > He is on vacation from Nov 23rd until March....and that is it. No more

> > appointments. He said that my eye doctor will determine what is going to

> > happen. But he is not concerned with my taper off ...I should be just fine.

> > If need be the eye doctor can refer me to an neur-ophthalmologist.

> >

> > Is this right...what do I do now...I have been looking for someone for a

> > second opinion...but what is the deal? Will I be fine - he said he has no

> > concerns with me and tapering off - what happens now? Am I suppose to still

> > be under doctor's care? This seems so weird to me, but what about to you

> > guys?

> >

> > Hope I explained it enough..help help help!

> >

> >

> >

>

[Guest guest]

Thanks, Marla. That's a good idea, to ask the nurses. So KP, you have several options here--call the doctor Jackie recommended, try to get a referral from your opth for a neuro-opth; that would at least get a 2nd opinion on your eyes & probably a referral to a neurologist; or try your local hospital. Is insurance an issue? Most will cover 2nd opinions; if not, find our what an initial visit would cost & try to come up with the money. Let us know what happens, but I really encourage you to act on this before the weekend. It's just a month until Thanksgiving, then Christmas, so you want to get things moving before you get into the holiday season.

Ramblin' RoseModerator

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Tue, 26 Oct 2010 23:29:28 -0600Subject: Re: Re: No more doctors care - I am done even though I am still having problems?

No seriously, this is the Dr from Hell, you are on the right track, I have tingling in my hands and feet a lot too, sometimes they go numb completely, and I can even stand up, there was a time I couldn't even get out of bed, if left ignored who knows where I'd be today. This is only the beginning, the doctors want to blow off Sarcoid, it will burn itself out, that's the old school of thinking, not the new. Do you have a teaching hospital near by, that would be a good place to start, as more doctors are learning about the dangers of NeuroSarcoid, call them and see if they have a Neurologist you could see for a second opinion. If you don't live near a teaching hosp. call your local hosp. and ask them for the name of there best Neuro, call and ask to talk to the nurses on the neuro unit, they will tell you who they think is the best as they work with them, and make an appt. ASAP. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?> > >> >> > Okay, the new news is as follows after meeting with my Neurologist today:> >> > My optic nerve has permanent damage.> >> > My facial palsy is the same or a little better.> >> > I have a slight reduction of vision in my eye, along with a pupil problem> > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > this week. I told him, that since my vision is so low in the eye and we have> > not been able to get it anywhere near good - just keep on reducing the> > meds...as what use it to take medicine so I can have like no vision - I> > can't read with that eye - even at 200.> >> > AND NOW>>>>>> >> > He is on vacation from Nov 23rd until March....and that is it. No more> > appointments. He said that my eye doctor will determine what is going to> > happen. But he is not concerned with my taper off ...I should be just fine.> > If need be the eye doctor can refer me to an neur-ophthalmologist.> >> > Is this right...what do I do now...I have been looking for someone for a> > second opinion...but what is the deal? Will I be fine - he said he has no> > concerns with me and tapering off - what happens now? Am I suppose to still> > be under doctor's care? This seems so weird to me, but what about to you> > guys?> >> > Hope I explained it enough..help help help!> >> > > >>

[Guest guest]

Rose, we have so many things in common, kind of freaky, once I blew a disc L4 L5, It was so painful I went straight to the doctor, who set me up with an MRI the next day, and surgery  by the end of the week, no more pain.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

You are not weird.  I know that it's hard for many of us to defy our doctors (even as a nurse, it took many years for me to overcome the " doctors are gods " syndrome), but some are just bozos.  Heck, somebody had to be at the bottom of the class, right?  Maybe it was this guy.  I have known doctors over the years that didn't seem bright enough to graduate from high school, let alone medical school.  It's probably divine intervention that this guy is taking an extended vacation; it will give you the opportunity (and excuse) to find someone else.  Check into the doctor that Jackie recommended.  Please don't delay; I'm very worried about your vision.  You said that this departing neuro said your opthamalogist could refer you to a neuro-opthamalogist, so call & ask for that referral.  I know I've about beaten this topic to death, but do you need an advocate to help you do these things?  Often chronic or serious illness saps our energy & initiative; sarc is notorious for this.  Plus you are likely affected by at least some degree of depression over the vision loss, so that can make it difficult to act.  Now is the time; don't wait.  And when you contact another doctor, don't let them give you an initial appt 2 months from now.  It would be better for your opth. to contact a neuro-opth directly & request an immediate evaluation.  These docs can always get someone in on an immediate basis.  I actually got a same-day MRI & neurologist appt for a ruptured disc in my neck because I dragged myself into my family doctor's office (no appt) in obvious excruciating pain & broke into tears.  I didn't plan that, but it was very effective because they knew it took a lot for me to cry.  I had been unable to get an MRI or neuro eval until the following week, but these folks escorted me right into the office, grabbed the doctor to do a brief exam, he ordered the MRI & I was on my way.  You have to be assertive, insistent & persistent, but not aggressive or threatening.  If you can get the ear of a nurse or even office manager, they will often intervene with the doctor.  Like Larry the Cable Guy says, " Let's git 'er done! "

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

   

> To: Neurosarcoidosis > Date: Wed, 27 Oct 2010 01:17:47 +0000

> Subject: Re: No more doctors care - I am done even though I am still having problems?> > Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?

> > > > > > >

> > >> > > Okay, the new news is as follows after meeting with my Neurologist today:> > >> > > My optic nerve has permanent damage.> > >> > > My facial palsy is the same or a little better.

> > >> > > I have a slight reduction of vision in my eye, along with a pupil problem> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > > this week. I told him, that since my vision is so low in the eye and we have

> > > not been able to get it anywhere near good - just keep on reducing the> > > meds...as what use it to take medicine so I can have like no vision - I> > > can't read with that eye - even at 200.

> > >> > > AND NOW>>>>>> > >> > > He is on vacation from Nov 23rd until March....and that is it. No more> > > appointments. He said that my eye doctor will determine what is going to

> > > happen. But he is not concerned with my taper off ...I should be just fine.> > > If need be the eye doctor can refer me to an neur-ophthalmologist.> > >> > > Is this right...what do I do now...I have been looking for someone for a

> > > second opinion...but what is the deal? Will I be fine - he said he has no> > > concerns with me and tapering off - what happens now? Am I suppose to still> > > be under doctor's care? This seems so weird to me, but what about to you

> > > guys?> > >> > > Hope I explained it enough..help help help!> > >> > > > > >> >> > > > > ------------------------------------

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages

> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

[Guest guest]

The University of Wisconsin also has great Dr. for the eyes. I went blind in one eye from a flair up and it was handled right away. Dr. Strickland I believe his name is.

Jackie

Re: Re: No more doctors care - I am done even though I am still having problems?No seriously, this is the Dr from Hell, you are on the right track, I have tingling in my hands and feet a lot too, sometimes they go numb completely, and I can even stand up, there was a time I couldn't even get out of bed, if left ignored who knows where I'd be today. This is only the beginning, the doctors want to blow off Sarcoid, it will burn itself out, that's the old school of thinking, not the new. Do you have a teaching hospital near by, that would be a good place to start, as more doctors are learning about the dangers of NeuroSarcoid, call them and see if they have a Neurologist you could see for a second opinion. If you don't live near a teaching hosp. call your local hosp. and ask them for the name of there best Neuro, call and ask to talk to the nurses on the neuro unit, they will tell you who they think is the best as they work with them, and make an appt. ASAP. Marla Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?> > >> >> > Okay, the new news is as follows after meeting with my Neurologist today:> >> > My optic nerve has permanent damage.> >> > My facial palsy is the same or a little better.> >> > I have a slight reduction of vision in my eye, along with a pupil problem> > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > this week. I told him, that since my vision is s o low in the eye and we have> > not been able to get it anywhere near good - just keep on reducing the> > meds...as what use it to take medicine so I can have like no vision - I> > can't read with that eye - even at 200.> >> > AND NOW>>>>>> >> > He is on vacation from Nov 23rd until March....and that is it. No more> > appointments. He said that my eye doctor will determine what is going to> > happen. But he is not concerned with my taper off ...I should be just fine.> > If need be the eye doctor can refer me to an neur-ophthalmologist.> >> > Is this right...what do I do now...I have been looking for someone for a> > second opinion...but what is the deal? Will I be fine - he said he has no> > concerns with me and tapering off - what happens now? Am I suppose to still> > be under doctor's care? This seems so weird to me, but what about to you> > guys?> >> > Hope I explained it enough..help help help!> >> > > >>

[Guest guest]

Mine was C6-7; just turned over in bed & felt like I pulled a muscle in my shoulder. By the next day it felt like someone was twisting my arm off at the shoulder. I didn't have surgery for a few weeks, for several reasons. The main one was that I already had plane tickets to Anchorage, Alaska for a nurse-midwifery conference. I had been looking forward to that for 2 years! I was hoping to have the surgery before I went, but the surgeon said NO WAY! I was not going to miss that trip, so I took this pneumatic traction device & a lot of pain pills with me. I really didn't remember anything from the educational sessions & dropped like a stone on the way back from our 6-hour cruise, but I did get to enjoy the 6-hour train ride to the cruise departure site & the first part of the cruise. Then had to take pain pills & zzzzz. I had the surgery right after I got home. By then I had lost the reflexes in my arm, had numbness & weakness. But the pain relief was immediate! I woke up in recovery & the pain was gone. I couldn't believe it, even though he had told me! Of course, I had pain from the neck incision & manipulation, but that was nothing. My reflexes came right back, took a few weeks to regain strength & a few more to lose the numbness. This was before the sarc neuropathy.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: mebramer@...Date: Tue, 26 Oct 2010 23:49:31 -0600Subject: Re: Re: No more doctors care - I am done even though I am still having problems?

Rose, we have so many things in common, kind of freaky, once I blew a disc L4 L5, It was so painful I went straight to the doctor, who set me up with an MRI the next day, and surgery by the end of the week, no more pain. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

You are not weird. I know that it's hard for many of us to defy our doctors (even as a nurse, it took many years for me to overcome the "doctors are gods" syndrome), but some are just bozos. Heck, somebody had to be at the bottom of the class, right? Maybe it was this guy. I have known doctors over the years that didn't seem bright enough to graduate from high school, let alone medical school. It's probably divine intervention that this guy is taking an extended vacation; it will give you the opportunity (and excuse) to find someone else. Check into the doctor that Jackie recommended. Please don't delay; I'm very worried about your vision. You said that this departing neuro said your opthamalogist could refer you to a neuro-opthamalogist, so call & ask for that referral. I know I've about beaten this topic to death, but do you need an advocate to help you do these things? Often chronic or serious illness saps our energy & initiative; sarc is notorious for this. Plus you are likely affected by at least some degree of depression over the vision loss, so that can make it difficult to act. Now is the time; don't wait. And when you contact another doctor, don't let them give you an initial appt 2 months from now. It would be better for your opth. to contact a neuro-opth directly & request an immediate evaluation. These docs can always get someone in on an immediate basis. I actually got a same-day MRI & neurologist appt for a ruptured disc in my neck because I dragged myself into my family doctor's office (no appt) in obvious excruciating pain & broke into tears. I didn't plan that, but it was very effective because they knew it took a lot for me to cry. I had been unable to get an MRI or neuro eval until the following week, but these folks escorted me right into the office, grabbed the doctor to do a brief exam, he ordered the MRI & I was on my way. You have to be assertive, insistent & persistent, but not aggressive or threatening. If you can get the ear of a nurse or even office manager, they will often intervene with the doctor. Like Larry the Cable Guy says, "Let's git 'er done!"

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

> To: Neurosarcoidosis > Date: Wed, 27 Oct 2010 01:17:47 +0000> Subject: Re: No more doctors care - I am done even though I am still having problems?> > Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?> > > > > > >> > >> > > Okay, the new news is as follows after meeting with my Neurologist today:> > >> > > My optic nerve has permanent damage.> > >> > > My facial palsy is the same or a little better.> > >> > > I have a slight reduction of vision in my eye, along with a pupil problem> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > > this week. I told him, that since my vision is so low in the eye and we have> > > not been able to get it anywhere near good - just keep on reducing the> > > meds...as what use it to take medicine so I can have like no vision - I> > > can't read with that eye - even at 200.> > >> > > AND NOW>>>>>> > >> > > He is on vacation from Nov 23rd until March....and that is it. No more> > > appointments. He said that my eye doctor will determine what is going to> > > happen. But he is not concerned with my taper off ...I should be just fine.> > > If need be the eye doctor can refer me to an neur-ophthalmologist.> > >> > > Is this right...what do I do now...I have been looking for someone for a> > > second opinion...but what is the deal? Will I be fine - he said he has no> > > concerns with me and tapering off - what happens now? Am I suppose to still> > > be under doctor's care? This seems so weird to me, but what about to you> > > guys?> > >> > > Hope I explained it enough..help help help!> > >> > > > > >> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Thanks, Jackie, for another suggestion for KP.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Wed, 27 Oct 2010 15:48:03 -0500Subject: Re: Re: No more doctors care - I am done even though I am still having problems?

The University of Wisconsin also has great Dr. for the eyes. I went blind in one eye from a flair up and it was handled right away. Dr. Strickland I believe his name is.

Jackie

Re: Re: No more doctors care - I am done even though I am still having problems?No seriously, this is the Dr from Hell, you are on the right track, I have tingling in my hands and feet a lot too, sometimes they go numb completely, and I can even stand up, there was a time I couldn't even get out of bed, if left ignored who knows where I'd be today. This is only the beginning, the doctors want to blow off Sarcoid, it will burn itself out, that's the old school of thinking, not the new. Do you have a teaching hospital near by, that would be a good place to start, as more doctors are learning about the dangers of NeuroSarcoid, call them and see if they have a Neurologist you could see for a second opinion. If you don't live near a teaching hosp. call your local hosp. and ask them for the name of there best Neuro, call and ask to talk to the nurses on the neuro unit, they will tell you who they think is the best as they work with them, and make an appt. ASAP. Marla Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

Central Wisconsin - he told me to stay on the Inflam. Free Diet...and that was that. Remember that I have had tingling in my hands and feet telling me that it was anxiety...I also got moon face, which is still there (down a bit now) and am tapering off the pred. until Dec. 16th. Now nothing...he is just done with me? What do I do...how do I get another doctor...I know that is a dumb question but I am really confused now. He said he saw bumps or nodes on my brain...and my vision is still very limited - going down as I am going down on the pred. He thinks I will be fine...I guess...seriously is this weird or am I the one who just doesn't know stuff?> > >> >> > Okay, the new news is as follows after meeting with my Neurologist today:> >> > My optic nerve has permanent damage.> >> > My facial palsy is the same or a little better.> >> > I have a slight reduction of vision in my eye, along with a pupil problem> > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > this week. I told him, that since my vision is s o low in the eye and we have> > not been able to get it anywhere near good - just keep on reducing the> > meds...as what use it to take medicine so I can have like no vision - I> > can't read with that eye - even at 200.> >> > AND NOW>>>>>> >> > He is on vacation from Nov 23rd until March....and that is it. No more> > appointments. He said that my eye doctor will determine what is going to> > happen. But he is not concerned with my taper off ...I should be just fine.> > If need be the eye doctor can refer me to an neur-ophthalmologist.> >> > Is this right...what do I do now...I have been looking for someone for a> > second opinion...but what is the deal? Will I be fine - he said he has no> > concerns with me and tapering off - what happens now? Am I suppose to still> > be under doctor's care? This seems so weird to me, but what about to you> > guys?> >> > Hope I explained it enough..help help help!> >> > > >>

[Guest guest]

Thanks Jackie...I appreciate the names I will look them up. I talked with a

nurse from my insurance who was upset with all that was happening and she gave

me two names to contact...neur-optham. I have my records faxed to one of the

doctor's today...we will see from there...

> >

> > >

> > >

> > > Okay, the new news is as follows after meeting with my Neurologist

today:

> > >

> > > My optic nerve has permanent damage.

> > >

> > > My facial palsy is the same or a little better.

> > >

> > > I have a slight reduction of vision in my eye, along with a pupil

problem

> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to

30

> > > this week. I told him, that since my vision is so low in the eye and we

have

> > > not been able to get it anywhere near good - just keep on reducing the

> > > meds...as what use it to take medicine so I can have like no vision - I

> > > can't read with that eye - even at 200.

> > >

> > > AND NOW>>>>>

> > >

> > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > appointments. He said that my eye doctor will determine what is going to

> > > happen. But he is not concerned with my taper off ...I should be just

fine.

> > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > >

> > > Is this right...what do I do now...I have been looking for someone for a

> > > second opinion...but what is the deal? Will I be fine - he said he has

no

> > > concerns with me and tapering off - what happens now? Am I suppose to

still

> > > be under doctor's care? This seems so weird to me, but what about to you

> > > guys?

> > >

> > > Hope I explained it enough..help help help!

> > >

> > >

> > >

> >

>

[Guest guest]

Hi Rose,

Thanks for the support...I am in the process of getting my record's faxed to a

neuro-opthom. today. Sounds like I may get an appointment tomorrow...and he is

looking into who would be the best neuro. for my situation too. I am hopeful

that this is a better track. I really need the doctor's to talk to each other

too - as 2 weeks ago the eye doctor told me my pupil was reacting properly and

now the neur. says it is not. He never looked at my eye records so nothing is

being done about it. I am not usually a timid person...but this has been a bit

overwhelming for me and my husband. I am totally taking your advice and advice

from the others...if not for this site...wow...not sure what would have happened

to me.

Thanks!!!

> > >

> > > >

> > > >

> > > > Okay, the new news is as follows after meeting with my Neurologist

today:

> > > >

> > > > My optic nerve has permanent damage.

> > > >

> > > > My facial palsy is the same or a little better.

> > > >

> > > > I have a slight reduction of vision in my eye, along with a pupil

problem

> > > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to

30

> > > > this week. I told him, that since my vision is so low in the eye and we

have

> > > > not been able to get it anywhere near good - just keep on reducing the

> > > > meds...as what use it to take medicine so I can have like no vision - I

> > > > can't read with that eye - even at 200.

> > > >

> > > > AND NOW>>>>>

> > > >

> > > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > > appointments. He said that my eye doctor will determine what is going to

> > > > happen. But he is not concerned with my taper off ...I should be just

fine.

> > > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > > >

> > > > Is this right...what do I do now...I have been looking for someone for a

> > > > second opinion...but what is the deal? Will I be fine - he said he has

no

> > > > concerns with me and tapering off - what happens now? Am I suppose to

still

> > > > be under doctor's care? This seems so weird to me, but what about to you

> > > > guys?

> > > >

> > > > Hope I explained it enough..help help help!

> > > >

> > > >

> > > >

> > >

> >

> >

> >

> >

> > ------------------------------------

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> >

> >

> > Message Archives:-

> > http://groups.yahoo.com/group/Neurosarcoidosis/messages

> >

> > Members Database:-

> > Listings of locations, phone numbers, and instant messengers.

> > http://groups.yahoo.com/group/Neurosarcoidosis/database

> >

> >

[Guest guest]

Hi Rose,

I am having record's faxed to a neuro-opthom. today. I may get an appointment

right away tomorrow. They are also looking into a neur. to work with him as both

my eye and neur. records are being sent over to a bit bigger hospital with more

specialists. Thanks for your input and support - it means the world to me!

KP

> > >

> > > >

> > > >

> > > > Okay, the new news is as follows after meeting with my Neurologist

> > today:

> > > >

> > > > My optic nerve has permanent damage.

> > > >

> > > > My facial palsy is the same or a little better.

> > > >

> > > > I have a slight reduction of vision in my eye, along with a pupil

> > problem

> > > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to

> > 30

> > > > this week. I told him, that since my vision is so low in the eye and we

> > have

> > > > not been able to get it anywhere near good - just keep on reducing the

> > > > meds...as what use it to take medicine so I can have like no vision - I

> > > > can't read with that eye - even at 200.

> > > >

> > > > AND NOW>>>>>

> > > >

> > > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > > appointments. He said that my eye doctor will determine what is going

> > to

> > > > happen. But he is not concerned with my taper off ...I should be just

> > fine.

> > > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > > >

> > > > Is this right...what do I do now...I have been looking for someone for

> > a

> > > > second opinion...but what is the deal? Will I be fine - he said he has

> > no

> > > > concerns with me and tapering off - what happens now? Am I suppose to

> > still

> > > > be under doctor's care? This seems so weird to me, but what about to

> > you

> > > > guys?

> > > >

> > > > Hope I explained it enough..help help help!

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

Hi Jackie,

Is he taking new patients - boy am I having the problems here, switched to

Marshfield Hospital...eye doctor would not give me a second opinion - looked at

my records and said he could do nothing for me that I needed to see a

neurologist. They got me into a neurologist - Dec. 23rd...seriously.

I am tapering off the pred. and will (suppose) to be off it by then. My vision

has gotten worse since tapering. So, do you think Dr. Strickland and or Dr.

Binlech would see me without a referral?

Thanks for the input..I am on the verge of crying and am so upset about this

lack of care I am getting...KP

> >

> > >

> > >

> > > Okay, the new news is as follows after meeting with my Neurologist

today:

> > >

> > > My optic nerve has permanent damage.

> > >

> > > My facial palsy is the same or a little better.

> > >

> > > I have a slight reduction of vision in my eye, along with a pupil

problem

> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to

30

> > > this week. I told him, that since my vision is so low in the eye and we

have

> > > not been able to get it anywhere near good - just keep on reducing the

> > > meds...as what use it to take medicine so I can have like no vision - I

> > > can't read with that eye - even at 200.

> > >

> > > AND NOW>>>>>

> > >

> > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > appointments. He said that my eye doctor will determine what is going to

> > > happen. But he is not concerned with my taper off ...I should be just

fine.

> > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > >

> > > Is this right...what do I do now...I have been looking for someone for a

> > > second opinion...but what is the deal? Will I be fine - he said he has

no

> > > concerns with me and tapering off - what happens now? Am I suppose to

still

> > > be under doctor's care? This seems so weird to me, but what about to you

> > > guys?

> > >

> > > Hope I explained it enough..help help help!

> > >

> > >

> > >

> >

>

[Guest guest]

I can't say for sure but I think the chances are good.

When I had eye problems (blind in R eye) They raised my pred. for 2 days IV and then lowered me back to 5 mg. I am pretty sure I went up to 40 mg. It helped my eyesight right away and has been good since.

These two Doctors come to Mauston every Tuesday. I could give you the office number here and the girls could tell you if they are taking new patients. Wonderful staff and they both work out of the same place.

I am sorry for your problems I know how hard it is to find a good doctor especially one who knows about NS. I will dig out the phone numbers you need and send them out tomorrow.

Prayers are with you.

Jackie

OH I was in Point today with my sister. Last min trip or I would have let you know I was coming. Maybe next time.

Re: No more doctors care - I am done even though I am still having problems?

Hi Jackie,Is he taking new patients - boy am I having the problems here, switched to Marshfield Hospital...eye doctor would not give me a second opinion - looked at my records and said he could do nothing for me that I needed to see a neurologist. They got me into a neurologist - Dec. 23rd...seriously.I am tapering off the pred. and will (suppose) to be off it by then. My vision has gotten worse since tapering. So, do you think Dr. Strickland and or Dr. Binlech would see me without a referral? Thanks for the input..I am on the verge of crying and am so upset about this lack of care I am getting...KP> > > > >> > >> > > Okay, the new news is as follows after meeting with my Neurologist today:> > >> > > My optic nerve has permanent damage.> > >> > > My facial palsy is the same or a little better.> > >> > > I have a slight reduction of vision in my eye, along with a pupil problem> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > > this week. I told him, that since my vision is so low in the eye and we have> > > not been able to get it anywhere near good - just keep on reducing the> > > meds...as what use it to take medicine so I can have like no vision - I> > > can't read with that eye - even at 200.> > >> > > AND NOW>>>>>> > >> > > He is on vacation from Nov 23rd until March....and that is it. No more> > > appointments. He said that my eye doctor will determine what is going to> > > happen. But he is not concerned with my taper off ...I should be just fine.> > > If need be the eye doctor can refer me to an neur-ophthalmologist.> > >> > > Is this right...what do I do now...I have been looking for someone for a> > > second opinion...but what is the deal? Will I be fine - he said he has no> > > concerns with me and tapering off - what happens now? Am I suppose to still> > > be under doctor's care? This seems so weird to me, but what about to you> > > guys?> > >> > > Hope I explained it enough..help help help!> > >> > > > > >> >>

[Guest guest]

You need to call the Neurologist back and tell them that you can't wait until Dec, you need to see him ASAP, Don't take NO for an answer, push your way into appt. like this week.  Tell them your losing your vision, your going off Pred. and getting sicker and can't wait!!.

MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

Hi Jackie,

Is he taking new patients - boy am I having the problems here, switched to Marshfield Hospital...eye doctor would not give me a second opinion - looked at my records and said he could do nothing for me that I needed to see a neurologist. They got me into a neurologist - Dec. 23rd...seriously.

I am tapering off the pred. and will (suppose) to be off it by then. My vision has gotten worse since tapering. So, do you think Dr. Strickland and or Dr. Binlech would see me without a referral?

Thanks for the input..I am on the verge of crying and am so upset about this lack of care I am getting...KP

> >

> > >

> > >

> > > Okay, the new news is as follows after meeting with my Neurologist today:

> > >

> > > My optic nerve has permanent damage.

> > >

> > > My facial palsy is the same or a little better.

> > >

> > > I have a slight reduction of vision in my eye, along with a pupil problem

> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30

> > > this week. I told him, that since my vision is so low in the eye and we have

> > > not been able to get it anywhere near good - just keep on reducing the

> > > meds...as what use it to take medicine so I can have like no vision - I

> > > can't read with that eye - even at 200.

> > >

> > > AND NOW>>>>>

> > >

> > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > appointments. He said that my eye doctor will determine what is going to

> > > happen. But he is not concerned with my taper off ...I should be just fine.

> > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > >

> > > Is this right...what do I do now...I have been looking for someone for a

> > > second opinion...but what is the deal? Will I be fine - he said he has no

> > > concerns with me and tapering off - what happens now? Am I suppose to still

> > > be under doctor's care? This seems so weird to me, but what about to you

> > > guys?

> > >

> > > Hope I explained it enough..help help help!

> > >

> > >

> > >

> >

>

[Guest guest]

KP,

Call the Neurologists office and ask them to speak with the triage nurse about an upcoming appointment you have. If the front desk asks anything other then that just say to them "It's because your losing your vision" That should get you to the nurse. If they tell you to see an Ophthalmologist tell them that's who sent you to them, that he could go no further and transferred you to them but now your losing your eye sight and as far as your concerned they are you Doctors and you want to see them before you slowly go blind waiting for your appointment. This should work.

If everyone in your town is an Asshole then what you should do next is go to one of the 24 hour walk in centers and tell them your side effects from a medicine you think. Once they see you and start writing up they case then best case scenario you get someone who actually isn't a putz, worst case scenario you get them to call on your account to get you to the Neurologist after concurring you need to see them STAT.

That should be the easiest and fastest but their are other ways also.

Mitch

Re: Re: No more doctors care - I am done even though I am still having problems?

You need to call the Neurologist back and tell them that you can't wait until Dec, you need to see him ASAP, Don't take NO for an answer, push your way into appt. like this week. Tell them your losing your vision, your going off Pred. and getting sicker and can't wait!!.

Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

Hi Jackie,

Is he taking new patients - boy am I having the problems here, switched to Marshfield Hospital...eye doctor would not give me a second opinion - looked at my records and said he could do nothing for me that I needed to see a neurologist. They got me into a neurologist - Dec. 23rd...seriously.

I am tapering off the pred. and will (suppose) to be off it by then. My vision has gotten worse since tapering. So, do you think Dr. Strickland and or Dr. Binlech would see me without a referral?

Thanks for the input..I am on the verge of crying and am so upset about this lack of care I am getting...KP

> >

> > >

> > >

> > > Okay, the new news is as follows after meeting with my Neurologist today:

> > >

> > > My optic nerve has permanent damage.

> > >

> > > My facial palsy is the same or a little better.

> > >

> > > I have a slight reduction of vision in my eye, along with a pupil problem

> > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30

> > > this week. I told him, that since my vision is so low in the eye and we have

> > > not been able to get it anywhere near good - just keep on reducing the

> > > meds...as what use it to take medicine so I can have like no vision - I

> > > can't read with that eye - even at 200.

> > >

> > > AND NOW>>>>>

> > >

> > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > appointments. He said that my eye doctor will determine what is going to

> > > happen. But he is not concerned with my taper off ...I should be just fine.

> > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > >

> > > Is this right...what do I do now...I have been looking for someone for a

> > > second opinion...but what is the deal? Will I be fine - he said he has no

> > > concerns with me and tapering off - what happens now? Am I suppose to still

> > > be under doctor's care? This seems so weird to me, but what about to you

> > > guys?

> > >

> > > Hope I explained it enough..help help help!

> > >

> > >

> > >

> >

>

[Guest guest]

Yes, to both - numbers and let me know if you come to Point. The nurse with my

insurance (only one who has been nice to me) looked up both doctors and was

unable to locate any information, so numbers would be great.

Thanks - KP

> > >

> > > >

> > > >

> > > > Okay, the new news is as follows after meeting with my Neurologist

today:

> > > >

> > > > My optic nerve has permanent damage.

> > > >

> > > > My facial palsy is the same or a little better.

> > > >

> > > > I have a slight reduction of vision in my eye, along with a pupil

problem

> > > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to

30

> > > > this week. I told him, that since my vision is so low in the eye and

we have

> > > > not been able to get it anywhere near good - just keep on reducing the

> > > > meds...as what use it to take medicine so I can have like no vision -

I

> > > > can't read with that eye - even at 200.

> > > >

> > > > AND NOW>>>>>

> > > >

> > > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > > appointments. He said that my eye doctor will determine what is going

to

> > > > happen. But he is not concerned with my taper off ...I should be just

fine.

> > > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > > >

> > > > Is this right...what do I do now...I have been looking for someone for

a

> > > > second opinion...but what is the deal? Will I be fine - he said he has

no

> > > > concerns with me and tapering off - what happens now? Am I suppose to

still

> > > > be under doctor's care? This seems so weird to me, but what about to

you

> > > > guys?

> > > >

> > > > Hope I explained it enough..help help help!

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Thanks Mitch,

Yes, this has been and is a nightmare. My husband and I are thinking of taking a

trip to Madison - a town with a Univ. Hospital. At which point I will be so

ill..that I go to the ER there and see what happens. I am flabbergasted that

the nero-optomologist refused to see me based on my records, not talking to me!

And my nero who is off from Nov. - March telling me, oh...you will be okay not

even seeing me before he leaves, which is also so weird...I am trapped in some

twilight zone...I never even mentioned it took eye doctors 6 weeks to get my

prescription lenses right...so every step has been a major production...you'd

think I am living in a foreign country. Thanks again for your suggestions -

these are desperate times for me now.

KP

> > >

> > > >

> > > >

> > > > Okay, the new news is as follows after meeting with my Neurologist

today:

> > > >

> > > > My optic nerve has permanent damage.

> > > >

> > > > My facial palsy is the same or a little better.

> > > >

> > > > I have a slight reduction of vision in my eye, along with a pupil

problem

> > > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to

30

> > > > this week. I told him, that since my vision is so low in the eye and

we have

> > > > not been able to get it anywhere near good - just keep on reducing the

> > > > meds...as what use it to take medicine so I can have like no vision -

I

> > > > can't read with that eye - even at 200.

> > > >

> > > > AND NOW>>>>>

> > > >

> > > > He is on vacation from Nov 23rd until March....and that is it. No more

> > > > appointments. He said that my eye doctor will determine what is going

to

> > > > happen. But he is not concerned with my taper off ...I should be just

fine.

> > > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > > >

> > > > Is this right...what do I do now...I have been looking for someone for

a

> > > > second opinion...but what is the deal? Will I be fine - he said he has

no

> > > > concerns with me and tapering off - what happens now? Am I suppose to

still

> > > > be under doctor's care? This seems so weird to me, but what about to

you

> > > > guys?

> > > >

> > > > Hope I explained it enough..help help help!

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Here is what I have.

Dr. Brad Beinlich

800 Highland Ave.

UWest Neurology clinic

Madison Number is

Mauston Number is

Dr. Janet Cushing

Dr. W. Sterken

Madison Phone Number is

I saw Dr. Cushing first and she is great. Dr. Sterken was for a small cataract they are watching.

Sorry about the confusion in the spelling of names . Got to remember I am old. 60 ya know. lol

I will let you know when I come up that way again.

Best wishes and my prayers.

Jackie

Re: No more doctors care - I am done even though I am still having problems?

Yes, to both - numbers and let me know if you come to Point. The nurse with my insurance (only one who has been nice to me) looked up both doctors and was unable to locate any information, so numbers would be great.Thanks - KP> > > > > > >> > > >> > > > Okay, the new news is as follows after meeting with my Neurologist today:> > > >> > > > My optic nerve has permanent damage.> > > >> > > > My facial palsy is the same or a little better.> > > >> > > > I have a slight reduction of vision in my eye, along with a pupil problem> > > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way to 30> > > > this week. I told him, that since my vision is so low in the eye and we have> > > > not been able to get it anywhere near good - just keep on reducing the> > > > meds...as what use it to take medicine so I can have like no vision - I> > > > can't read with that eye - even at 200.> > > >> > > > AND NOW>>>>>> > > >> > > > He is on vacation from Nov 23rd until March....and that is it. No more> > > > appointments. He said that my eye doctor will determine what is going to> > > > happen. But he is not concerned with my taper off ...I should be just fine.> > > > If need be the eye doctor can refer me to an neur-ophthalmologist.> > > >> > > > Is this right...what do I do now...I have been looking for someone for a> > > > second opinion...but what is the deal? Will I be fine - he said he has no> > > > concerns with me and tapering off - what happens now? Am I suppose to still> > > > be under doctor's care? This seems so weird to me, but what about to you> > > > guys?> > > >> > > > Hope I explained it enough..help help help!> > > >> > > > > > > >> > >> >>

[Guest guest]

Hi Jackie -

Thanks thanks thanks...I will see what I can do with these numbers.

KP

> > > >

> > > > >

> > > > >

> > > > > Okay, the new news is as follows after meeting with my Neurologist

today:

> > > > >

> > > > > My optic nerve has permanent damage.

> > > > >

> > > > > My facial palsy is the same or a little better.

> > > > >

> > > > > I have a slight reduction of vision in my eye, along with a pupil

problem

> > > > > due to the optic nerve damage. I am now on 40 mg of Pred. on my way

to 30

> > > > > this week. I told him, that since my vision is so low in the eye and

we have

> > > > > not been able to get it anywhere near good - just keep on reducing

the

> > > > > meds...as what use it to take medicine so I can have like no vision

- I

> > > > > can't read with that eye - even at 200.

> > > > >

> > > > > AND NOW>>>>>

> > > > >

> > > > > He is on vacation from Nov 23rd until March....and that is it. No

more

> > > > > appointments. He said that my eye doctor will determine what is

going to

> > > > > happen. But he is not concerned with my taper off ...I should be

just fine.

> > > > > If need be the eye doctor can refer me to an neur-ophthalmologist.

> > > > >

> > > > > Is this right...what do I do now...I have been looking for someone

for a

> > > > > second opinion...but what is the deal? Will I be fine - he said he

has no

> > > > > concerns with me and tapering off - what happens now? Am I suppose

to still

> > > > > be under doctor's care? This seems so weird to me, but what about to

you

> > > > > guys?

> > > > >

> > > > > Hope I explained it enough..help help help!

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>