Re: Positive too soon

[Guest guest]

I am sorry to hear of all the trouble you are having. Marshfield has a wonderful medical center. Have you thought of going in to the E R? If they see it is a big emergency maybe they can do something for you. I can't believe you are having so much trouble with the DR.s

Who is taking you down on Prednisone? I mean if you don't have a neuro then who is doing the big deed? confusing.

Let me know if there is anything I can do.

Jackie

Positive too soon

Records were sent, doctor looked them over - refused to see me. Found out he is not a Neur-optmo. He would not even see me for a second opinion as he said it is more a neuro. issue. The office made an appointment to see a neruoligst- Dec 23rd. So, I am no longer under any neuro. care, have lost vision since reducing the meds, and suppose to be off by Dec. 16th. This is just cryable if that is a word. My spouse was so made he called the doctor's office and is now trying to move any appointment up.KP

[Guest guest]

Hi Jackie,

I am doing it myself..I guess. I see my eye doctor on the 9th of Nov, who

referred me to the neurologist, who is going on vacation starting the 23rd until

March, but I won't be off the pred until Dec. 16th with no one monitoring me. I

am suppose to call if anything seems weird...but he would not tell me anything

specific to watch out...just if I feel funny. Meanwhile he did tell me i have

permanent damage to my optic nerve...but I guess I am not suppose to worry about

that either. I am also having constant numbness in my left hand and arm (eye

left side, lid and facial palsy left side) - but that is just my imagination

according to the neurologist...but he would give me anti-anxiety meds. I also

have enlarged lymph nodes, high inflammation rate, and other things going

on...but no follow ups nothing - guess I am suppose to be just fine...except I

am going blind in my left eye...oh well..

>

> I am sorry to hear of all the trouble you are having. Marshfield has a

wonderful medical center. Have you thought of going in to the E R? If they

see it is a big emergency maybe they can do something for you. I can't believe

you are having so much trouble with the DR.s

> Who is taking you down on Prednisone? I mean if you don't have a neuro then

who is doing the big deed? confusing.

>

> Let me know if there is anything I can do.

>

> Jackie

>

> Positive too soon

>

>

>

> Records were sent, doctor looked them over - refused to see me. Found out he

is not a Neur-optmo. He would not even see me for a second opinion as he said it

is more a neuro. issue. The office made an appointment to see a neruoligst- Dec

23rd. So, I am no longer under any neuro. care, have lost vision since reducing

the meds, and suppose to be off by Dec. 16th. This is just cryable if that is a

word. My spouse was so made he called the doctor's office and is now trying to

move any appointment up.

>

> KP

>

[Guest guest]

Do you have a an absolute dx of Sarcoidosis?  You have swollen lymph nodes, have on biopsied, that's how I found out I had sarcoid I had NO symptoms, I just had one swollen lymph node, and they thought for sure I had lymphoma, and it took forever to get the results as they had every pathologist they could find to look at the slide, then told me I have Sarcoidosis, nothing to worry about, because only 10-15 % of people have problems with it, with in 2 months I was having trouble breathing only the beginning.  So get a lymph node bx, once you get a sound dx, then the rest is so much easier to know how to treat and what there treating. and that tapering off the Pred. is a big problem.

 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,

I am doing it myself..I guess. I see my eye doctor on the 9th of Nov, who referred me to the neurologist, who is going on vacation starting the 23rd until March, but I won't be off the pred until Dec. 16th with no one monitoring me. I am suppose to call if anything seems weird...but he would not tell me anything specific to watch out...just if I feel funny. Meanwhile he did tell me i have permanent damage to my optic nerve...but I guess I am not suppose to worry about that either. I am also having constant numbness in my left hand and arm (eye left side, lid and facial palsy left side) - but that is just my imagination according to the neurologist...but he would give me anti-anxiety meds. I also have enlarged lymph nodes, high inflammation rate, and other things going on...but no follow ups nothing - guess I am suppose to be just fine...except I am going blind in my left eye...oh well..

>

> I am sorry to hear of all the trouble you are having. Marshfield has a wonderful medical center. Have you thought of going in to the E R? If they see it is a big emergency maybe they can do something for you. I can't believe you are having so much trouble with the DR.s

> Who is taking you down on Prednisone? I mean if you don't have a neuro then who is doing the big deed? confusing.

>

> Let me know if there is anything I can do.

>

> Jackie

>

> Positive too soon

>

>

>

> Records were sent, doctor looked them over - refused to see me. Found out he is not a Neur-optmo. He would not even see me for a second opinion as he said it is more a neuro. issue. The office made an appointment to see a neruoligst- Dec 23rd. So, I am no longer under any neuro. care, have lost vision since reducing the meds, and suppose to be off by Dec. 16th. This is just cryable if that is a word. My spouse was so made he called the doctor's office and is now trying to move any appointment up.

>

> KP

>

[Guest guest]

Hi,

I am not sure if I have a for sure diagnosis...the MRI the nerol. said showed

nodes on the mynelles of my brain..plus the facial and lid palsy on top of the

optic nerve stuff...as far as I can tell all are symptoms of the nero-sarc.

The nero. is ignoring the lymph nodes so far...I am in to see a new doctor that

my insurance suggested...a internal medicine doctor who will become my primary

care physician since I don't have one. They think the new doctor will help run

the show and maybe get things done that my nero. is not doing? I can only hope

and pray.

Not sure what are the issues with sarc and the lymph node system?

KP

> > >

> > > I am sorry to hear of all the trouble you are having. Marshfield has a

> > wonderful medical center. Have you thought of going in to the E R? If they

> > see it is a big emergency maybe they can do something for you. I can't

> > believe you are having so much trouble with the DR.s

> > > Who is taking you down on Prednisone? I mean if you don't have a neuro

> > then who is doing the big deed? confusing.

> > >

> > > Let me know if there is anything I can do.

> > >

> > > Jackie

> > >

> > > Positive too soon

> > >

> > >

> > >

> > > Records were sent, doctor looked them over - refused to see me. Found out

> > he is not a Neur-optmo. He would not even see me for a second opinion as he

> > said it is more a neuro. issue. The office made an appointment to see a

> > neruoligst- Dec 23rd. So, I am no longer under any neuro. care, have lost

> > vision since reducing the meds, and suppose to be off by Dec. 16th. This is

> > just cryable if that is a word. My spouse was so made he called the doctor's

> > office and is now trying to move any appointment up.

> > >

> > > KP

> > >

> >

> >

> >

>

[Guest guest]

Sacoidosis is an Auto Immune disease, and our lymph system is like a filter system, it's there to filter out the bad stuff, so when the Sarcoid is found in different areas of the body, it's usually in the lymph system, which is trying to get rid of it.

So if they biopsy a lymph node, they may find out what there dealing with, and if it comes back as Sarcoidosis then there is no more guessing, Does that  make sense? 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,

I am not sure if I have a for sure diagnosis...the MRI the nerol. said showed nodes on the mynelles of my brain..plus the facial and lid palsy on top of the optic nerve stuff...as far as I can tell all are symptoms of the nero-sarc.

The nero. is ignoring the lymph nodes so far...I am in to see a new doctor that my insurance suggested...a internal medicine doctor who will become my primary care physician since I don't have one. They think the new doctor will help run the show and maybe get things done that my nero. is not doing? I can only hope and pray.

Not sure what are the issues with sarc and the lymph node system?

KP

> > >

> > > I am sorry to hear of all the trouble you are having. Marshfield has a

> > wonderful medical center. Have you thought of going in to the E R? If they

> > see it is a big emergency maybe they can do something for you. I can't

> > believe you are having so much trouble with the DR.s

> > > Who is taking you down on Prednisone? I mean if you don't have a neuro

> > then who is doing the big deed? confusing.

> > >

> > > Let me know if there is anything I can do.

> > >

> > > Jackie

> > >

> > > Positive too soon

> > >

> > >

> > >

> > > Records were sent, doctor looked them over - refused to see me. Found out

> > he is not a Neur-optmo. He would not even see me for a second opinion as he

> > said it is more a neuro. issue. The office made an appointment to see a

> > neruoligst- Dec 23rd. So, I am no longer under any neuro. care, have lost

> > vision since reducing the meds, and suppose to be off by Dec. 16th. This is

> > just cryable if that is a word. My spouse was so made he called the doctor's

> > office and is now trying to move any appointment up.

> > >

> > > KP

> > >

> >

> >

> >

>

[Guest guest]

Hi,

Thanks, you are the first person to explain that to me...I did not know that.

My doctor (Nero) did not seem all that worried about my lymph nodes in my neck

being inflamed..so I really did not know. In fact, he now said to do nothing

until I am off the pred. which seems like I will not be able to ween off at

least not now, as my eye lid is starting to droop again. I am meeting with a

Internal Med. doctor today to hopefully become my primary care doctor (which I

do not have one) and hopefully she will be able to coordinate things for me. I

will talk to her about the lymph nodes.

Thanks again for all the support and information.

KP

> > > > >

> > > > > I am sorry to hear of all the trouble you are having. Marshfield has

> > a

> > > > wonderful medical center. Have you thought of going in to the E R? If

> > they

> > > > see it is a big emergency maybe they can do something for you. I can't

> > > > believe you are having so much trouble with the DR.s

> > > > > Who is taking you down on Prednisone? I mean if you don't have a

> > neuro

> > > > then who is doing the big deed? confusing.

> > > > >

> > > > > Let me know if there is anything I can do.

> > > > >

> > > > > Jackie

> > > > >

> > > > > Positive too soon

> > > > >

> > > > >

> > > > >

> > > > > Records were sent, doctor looked them over - refused to see me. Found

> > out

> > > > he is not a Neur-optmo. He would not even see me for a second opinion

> > as he

> > > > said it is more a neuro. issue. The office made an appointment to see a

> > > > neruoligst- Dec 23rd. So, I am no longer under any neuro. care, have

> > lost

> > > > vision since reducing the meds, and suppose to be off by Dec. 16th.

> > This is

> > > > just cryable if that is a word. My spouse was so made he called the

> > doctor's

> > > > office and is now trying to move any appointment up.

> > > > >

> > > > > KP

> > > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>