Re: Opinion of docs

[Guest guest]

Any body? 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIVSubject: Opinion of docsTo: neurosarcoidosis Date: Tuesday, June 16, 2009, 10:16 AM

I was wondering what kind of doc everyone has and what kind of doc has helped you the most? I have an appt. with a neurologist on Friday and canceled my second cat-scan until i see him cuz the ent is on vacation anyway. Geez...I haven't even gotten the bill from the first one yet so I don't want to have to pay for another one just yet. But now that I've lost my primary doc ...I am at a loss at what to look for in a doc. They all seem so

clueless about sarc. ANY suggestions would be appreciated... Thanks!

S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV)."No one whose hope is in You will ever be put to shame….Show me Your ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long." Psalm 25:3,4,5 NIV

[Guest guest]

, I saw forget the ENT, I had a bad experience with one too. He didn't know anything about Sarc. so I went to a Neuro doc, he was better, I just posted a list of my docs. and an ENT is not one of them.  I think you were

right waiting on the CT until you see the Neuro.  Good luck. Marla

I was wondering what kind of doc everyone has and what kind of doc has helped you the most?  I have an appt. with a neurologist on Friday and canceled my second cat-scan until i see him cuz the ent is on vacation anyway.  Geez...I haven't even gotten the bill from the first one yet so I don't want to have to pay for another one just yet.  But now that I've lost my primary doc ...I am at a loss at what to look for in a doc.  They all seem so clueless about sarc. ANY suggestions would be appreciated...   Thanks!  

S. 29:11, For I know the plans I have for you, " declares the

Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). " No one whose hope is in You will ever be put to shame….Show me Your

ways, O LORD, teach me Your paths; guide me in Your truth and teach me, for You are God my Savior, and My hope is in You all day long. " Psalm 25:3,4,5 NIV

[Guest guest]

, my primary care doc is an internist, but it took a few years to get into one I liked. My neuro used the good ol' boy network to get me in. (Isn't that ridiculous?) Anyway, I have a better than average PCP, a local neuro that diagnosed me at the first visit by my history, even though he had only seen one other case of NS in his career. He wasn't terribly knowledgeable, but was open to information. He's since had two more (probably getting better at diagnosing!). I have a local pulmonologist/sleep specialist who's probably better than average, plus I see a pulmonologist at the sarc clinic in Indianapolis (Indiana Univ. Medical Center). I see him every 6 months & the local guy once a year, so that he's in the loop. I've also seen Dr. Baughman at Univ. of Cincinnati (3 times, I think), and can go back if I feel it's necessary. I've seen 2 neurologists at IUMC, one for second neuro opinion & the other for consult about peripheral neuropathy (apparently he's the "go-to guy" at IU for PN). He didn't have any additional recommendations. I've seen my own dermatologist, to biopsy a odd rash on my arms (indeterminate), and I see my own ENT for thyroid issues. I've seen a nephrologist at IU for chronic kidney disease, stage 3, cause indeterminate. I've also seen Dr. Barney Stern, when he was at Emory Univ. in Atlanta several years ago; at that time he was one of the top NS docs, but moved to land or somewhere & specialized in young women with strokes. I saw him initially as a consult for treatment options, then a year later for a follow-up visit. I found him on the Internet & my neuro agreed to the consult. I also see a psychiatrist for my antidepressant & adult ADD, a SW counselor, my ob-gyn doc & NP, and my opthamologist (sp?). In the past I have seen a local urologist & one at IU, 2 psychologists (for neuropsych evals), and probably others. Now of all these people, my PCP is excellent for general medical needs & is also pretty strong on nutrition, I see my local neuro at least every 6 months (I've been in remission for about 3 years, or I would see him more often). I really don't think the sarc doc at IU adds much at this point, but it's probably a CYA (cover your assETS) situation.

So the long & the short of it is that over the past 8 years, since my NS diagnosis, I've seen a lot of "ologists," but currently the majority of my care is handled by my local neuro & my PCP. I'm happy with both of them, for their knowledge, caring manner & open attitude. Was this any help, or did it make you more confused?!? Oh, as far as distance to care, I went from Indiana to Atlanta to see Dr. Stern, Indiana to Cincinnati (about 3 hours) for Dr. Baughman, and about a 45-min. drive to IUMC.

I've pretty much confused myself at this point. I actually have all these providers listed in my computer records, from current to past, so that I can refer to it if needed.

Ramblin' RoseModerator Hotmail® has ever-growing storage! Don’t worry about storage limits. Check it out.

[Guest guest]

Rose,

It is intereresting that you list an ENT in your post for thyroid

issues. Can I ask if you thyroid issues are sarc related? I had an

ultrasound of the thyroid Friday which showed a nodule. I will get

offical report on Tuesday or so but wanted to know about your

experience. I have had this nodue since January and no one told me

about it. I had to have a CT of the neck because of some enlarge tissue

under my jaw/ear of the right. In the report (but not listed in the

findings) is a mention of probable thyroid nodules but no one really

paid any attention since it wasn't listed as a finding. My neurologist

asked what was being done for my thyroid nodules on my last visit. I

had to bring it up to my pcp to get it investigated.

My new neurpsych did testing the beginning of this year and she finally

has overridden the other jerks and the somatoform disorder bullcrap. So

finally I have that monkey off my back. Friday I also had BAER and

SSE's of both legs. Each test had to be performed 2 times so I am sure

they did they to be sure they were getting the correct readings. I

overheard the tech speaking to the student about the readings not

looking normal. My neurologist is out of town for 2 weeks but I am

going to see if my PCP can get the results before then. It looks like

things may be coming to a head so I can get a definitive diagnosis

and/or treatment.

Thanks to all of you for always being there for me. I know I have not

been very active, but what little time and energy I have I spend on my

grandchildren. God Bless all of you!

Terri G.

[Guest guest]

Terry, don't apologize for knowing your priorities & honoring them. I've had multiple thyroid nodules for many years. My thyroid function tests have always been normal. A biopsy was attempted several years ago, but was unsuccessful due to the location of the nodule. The largest nodule has grown slightly over the last year or so, and more smaller ones have developed, so we are considering another biopsy attempt. My brother died at 55 of medullary thyroid cancer, which has a genetic component, so my ENT has kept a close eye on my nodules, along with calcitonin levels. Calcitonin is a marker for this type of thyroid cancer. My doctors think sarc in my thyroid is unlikely. I'm having another ultrasound in July to check for any change. I've been taking thyroid medication even though my blood tests were normal; sometimes that will help decrease the size of the nodules. We'll see.

Ramblin' RoseModerator

> To: Neurosarcoidosis > Date: Mon, 22 Jun 2009 00:47:56 +0000> Subject: Re: Opinion of docs> > > Rose,> > It is intereresting that you list an ENT in your post for thyroid> issues. Can I ask if you thyroid issues are sarc related? I had an> ultrasound of the thyroid Friday which showed a nodule. I will get> offical report on Tuesday or so but wanted to know about your> experience. I have had this nodue since January and no one told me> about it. I had to have a CT of the neck because of some enlarge tissue> under my jaw/ear of the right. In the report (but not listed in the> findings) is a mention of probable thyroid nodules but no one really> paid any attention since it wasn't listed as a finding. My neurologist> asked what was being done for my thyroid nodules on my last visit. I> had to bring it up to my pcp to get it investigated.> > My new neurpsych did testing the beginning of this year and she finally> has overridden the other jerks and the somatoform disorder bullcrap. So> finally I have that monkey off my back. Friday I also had BAER and> SSE's of both legs. Each test had to be performed 2 times so I am sure> they did they to be sure they were getting the correct readings. I> overheard the tech speaking to the student about the readings not> looking normal. My neurologist is out of town for 2 weeks but I am> going to see if my PCP can get the results before then. It looks like> things may be coming to a head so I can get a definitive diagnosis> and/or treatment.> > > Thanks to all of you for always being there for me. I know I have not> been very active, but what little time and energy I have I spend on my> grandchildren. God Bless all of you!> > Terri G.> > > > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....> > 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]

Rose,

Thanks for the info; my doc is on vacation so I have not been able to

talk to him yet. He won't be back until next week so I will let you

know what is decided. I assume it will be a biopsy but I will let you

know when I find out.

Terri G.

>

>

> Terry, don't apologize for knowing your priorities & honoring them.

I've had multiple thyroid nodules for many years. My thyroid function

tests have always been normal. A biopsy was attempted several years ago,

but was unsuccessful due to the location of the nodule. The largest

nodule has grown slightly over the last year or so, and more smaller

ones have developed, so we are considering another biopsy attempt. My

brother died at 55 of medullary thyroid cancer, which has a genetic

component, so my ENT has kept a close eye on my nodules, along with

calcitonin levels. Calcitonin is a marker for this type of thyroid

cancer. My doctors think sarc in my thyroid is unlikely. I'm having

another ultrasound in July to check for any change. I've been taking

thyroid medication even though my blood tests were normal; sometimes

that will help decrease the size of the nodules. We'll see.

>

>

> Ramblin' Rose

> Moderator

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