Re: This is a serious question Ive already made all the jokes!

[Guest guest]

Stu, it could be your trigeminal nerve.. you need to see you neurologist or at least give them a call and let them know this is happening.

This is a serious question Ive already made all the jokes!

Foot in mouth disease,Pull yer foot outa yer mouth,etc., etc., etc.,yup Ive made every joke you can think of but this really has gottenserious and I dont have a clue what to do about it. I have the exactsame burning numbness in my tongue that we call neuropathy in ourfeet! Just over the last few weeks and its getting worse, at firstit was mostly in the evenings, just like the neuropathy in my feetusually is, but now the side of my tongue is extremely sore all thetime and the neuropathic feeling is still there in the evenings. About the only thing that makes it feel better, and at that only alittle is ice cream or cool fruit, ok so the ice cream isnt all thatbad, but just how fat can one lard butt afford to get already!?Well anyway, if you have any insight it sure would help, they arerunning out of new flavors at b & r!!!Stu

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.0/957 - Release Date: 8/16/2007 1:46 PM

[Guest guest]

Stu, it could be your trigeminal nerve.. you need to see you neurologist or at least give them a call and let them know this is happening.

This is a serious question Ive already made all the jokes!

Foot in mouth disease,Pull yer foot outa yer mouth,etc., etc., etc.,yup Ive made every joke you can think of but this really has gottenserious and I dont have a clue what to do about it. I have the exactsame burning numbness in my tongue that we call neuropathy in ourfeet! Just over the last few weeks and its getting worse, at firstit was mostly in the evenings, just like the neuropathy in my feetusually is, but now the side of my tongue is extremely sore all thetime and the neuropathic feeling is still there in the evenings. About the only thing that makes it feel better, and at that only alittle is ice cream or cool fruit, ok so the ice cream isnt all thatbad, but just how fat can one lard butt afford to get already!?Well anyway, if you have any insight it sure would help, they arerunning out of new flavors at b & r!!!Stu

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.484 / Virus Database: 269.12.0/957 - Release Date: 8/16/2007 1:46 PM

[Guest guest]

Thanks T I have an appointment with his Nurse Pract. Monday about the

headaches so Ill spring this on her at the same time, nothing like a

twofer! Have a great weekend.

Stu

>

> Stu, it could be your trigeminal nerve.. you need to see you

neurologist or at least give them a call and let them know this is

happening.

> This is a serious question Ive already

made all the jokes!

>

>

> Foot in mouth disease,

> Pull yer foot outa yer mouth,

> etc., etc., etc.,

> yup Ive made every joke you can think of but this really has gotten

> serious and I dont have a clue what to do about it. I have the exact

> same burning numbness in my tongue that we call neuropathy in our

> feet! Just over the last few weeks and its getting worse, at first

> it was mostly in the evenings, just like the neuropathy in my feet

> usually is, but now the side of my tongue is extremely sore all the

> time and the neuropathic feeling is still there in the evenings.

> About the only thing that makes it feel better, and at that only a

> little is ice cream or cool fruit, ok so the ice cream isnt all that

> bad, but just how fat can one lard butt afford to get already!?

>

> Well anyway, if you have any insight it sure would help, they are

> running out of new flavors at b & r!!!

>

> Stu

>

>

>

>

>

>

>

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>

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.484 / Virus Database: 269.12.0/957 - Release Date:

8/16/2007 1:46 PM

>

[Guest guest]

Stu, in my practice as a nurse-midwife, I encouraged my clients to write down their questions & concerns, but it was always hard to keep a cheery face when someone dug out a list with 10 or 15 things on it! Depending on how much time I had, I would say, "Let's deal with the top 3 or 4 today" & offer to make another appt for the rest. I always take in a typed note to my docs with symptom updates, questions, etc. One copy for me & one for them. My neurologist often makes notes on his copy & puts it into the chart. I try to keep it to one page, but once in awhile I'll make about a 3-page list, just to panic him! It's fun to watch his face & see the gears turning in his head. He's got a great sense of humor, so he never gets upset. I can't do it too often, or he won't fall for it. One of his favorite questions for me is "What do you expect as the end result of this treatment?" So I usually conclude my list with that, and answers such as preventing further organ damage, improving short-term memory, etc. One time I wrote "Become rich and famous!" Then on the next line, "Beautiful, too!" He got a good laugh out of it. I don't deliberately suck up to my doctors, but I know that if you are someone that they look forward to seeing, you will usually have a more relaxed doctor, who gives you all the time you need, listens & values what you say, etc. The ol' sugar beats vinegar thing. That being said, I have on occasion been very assertive (I try not to get hostile, because that shuts doors faster than anything, even whining.), once telling a doctor in the sarc clinic at Indiana Univ. Med. Center that I felt he blew me off when I talked about the fatigue, and that maybe he didn't realize fatigue was such an issue with sarc patients because the ones with the worst fatigue couldn't make it into the clinic. I said all this in front of a medical student. My feeling was that, as a midwife, I would want to know that a client/patient was unhappy or unsatisfied with the care I provided. It worked, because the next visit his attitude was different, he brought it up & apologized. He even included it in his note that day, and not in a critical way of me, but as a communication breakdown on his part.

Whoops, another long answer to a simple post! BTW, glad you see a nurse-practitioner; as a nurse-midwife, I'm always encouraging folks to see advanced practice nurses.

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: This is a serious question Ive already made all the jokes!Date: Fri, 17 Aug 2007 22:18:16 -0000

Thanks T I have an appointment with his Nurse Pract. Monday about theheadaches so Ill spring this on her at the same time, nothing like atwofer! Have a great weekend.Stu>> Stu, it could be your trigeminal nerve.. you need to see youneurologist or at least give them a call and let them know this ishappening.> This is a serious question Ive alreadymade all the jokes!> > > Foot in mouth disease,> Pull yer foot outa yer mouth,> etc., etc., etc.,> yup Ive made every joke you can think of but this really has gotten> serious and I dont have a clue what to do about it. I have the exact> same burning numbness in my tongue that we call neuropathy in our> feet! Just over the last few weeks and its getting worse, at first> it was mostly in the evenings, just like the neuropathy in my feet> usually is, but now the side of my tongue is extremely sore all the> time and the neuropathic feeling is still there in the evenings. > About the only thing that makes it feel better, and at that only a> little is ice cream or cool fruit, ok so the ice cream isnt all that> bad, but just how fat can one lard butt afford to get already!?> > Well anyway, if you have any insight it sure would help, they are> running out of new flavors at b & r!!!> > Stu> > > > > > >----------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.484 / Virus Database: 269.12.0/957 - Release Date:8/16/2007 1:46 PM>

Find a local pizza place, movie theater, and more….then map the best route!

[Guest guest]

Hey Rose:

I usually take a list with me and the doc has started making a joke

out of those lists because the only one who can read them is me, and

then only sometimes if the tremors werent too bad when i wrote them,

but I wouldnt ruin all his fun for anything.You had a great idea

though, last month when we were still fighting to get my sons tuition

reduced at Wash. State Univ. they had asked for SOME of my medical

bills and other information so we sent them a three inch stack of

papers and got the approval for the reduction in less than the two

weeks it was supposed to take just to get the paperwork intothe

committee! Maybe Ill deluge them in paper Monday just for the heck of

it!!!!!

Hee Hee I love to see Dr. Carlson and His Nurse Pat with panic on

their faces, they both have a great sense of humor and at least so far

neither has ever resorted to retaliation so I think Im safe. As far

as the honey and vinegar thing, ive been preaching that for years. In

fact I have a sister in law who had a round with breast cancer this

past year and did nothing but commplain how the doc and nurses wereent

very nice to her, I said i have never had ANY problems in fact they

all go way out of the way to make things easier for me at every office

I have to go to, and she couldnt understand it. I finally figured out

what the difference was, she started telling me that it was her RIGHT

to be treated nicely, and when I said it was her responsibility to

treat them nicely so they would WANT to treat her better she didnt get

it, guess it just goes to show you get back exactly what you put out

there, and you probably deserve it too.

Gob Bless,

Cya, Stu

[Guest guest]

Stu, I keep all of "lists" in my computer, dated. This has really been useful when trying to remember when a particular symptom started, whatever. And it's simple to type an update & print it out. Then we can all read it!1

Ramblin' Rose

Moderator

A merry heart is good medicine. Proverbs 17:22

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: This is a serious question Ive already made all the jokes!Date: Sat, 18 Aug 2007 20:28:23 -0000

Hey Rose:I usually take a list with me and the doc has started making a jokeout of those lists because the only one who can read them is me, andthen only sometimes if the tremors werent too bad when i wrote them,but I wouldnt ruin all his fun for anything.You had a great ideathough, last month when we were still fighting to get my sons tuitionreduced at Wash. State Univ. they had asked for SOME of my medicalbills and other information so we sent them a three inch stack ofpapers and got the approval for the reduction in less than the twoweeks it was supposed to take just to get the paperwork intothecommittee! Maybe Ill deluge them in paper Monday just for the heck ofit!!!!!Hee Hee I love to see Dr. Carlson and His Nurse Pat with panic ontheir faces, they both have a great sense of humor and at least so farneither has ever resorted to retaliation so I think Im safe. As faras the honey and vinegar thing, ive been preaching that for years. Infact I have a sister in law who had a round with breast cancer thispast year and did nothing but commplain how the doc and nurses wereentvery nice to her, I said i have never had ANY problems in fact theyall go way out of the way to make things easier for me at every officeI have to go to, and she couldnt understand it. I finally figured outwhat the difference was, she started telling me that it was her RIGHTto be treated nicely, and when I said it was her responsibility totreat them nicely so they would WANT to treat her better she didnt getit, guess it just goes to show you get back exactly what you put outthere, and you probably deserve it too.Gob Bless,Cya, Stu

Learn.Laugh.Share. Reallivemoms is right place!

[Guest guest]

Hey Rose

I just recently started keeping a blog on which I plan,,,,, on

starting a list similar to what you describe as well as history and

talking about how all this affects my and my familys lives. So far

its about as interesting as watching the Sahara dry but if you get

REAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAALY bored sometime heres the addy:

http://stuandsarc.wordpress.com/ Its been an interesting

experiment, but not as interesting as the day that Lizzy stumbled upon

it by accident and came home accusing me of cheating on her! To say I

was somewhat flumoxed would be a huge understatement but I guess she

just typed my name into Google and up came the blog and she said she

felt like I had cheated because I was talking behind her

back????????????????????????? Oh well wont do that again!!

Of course we had quite a laugh when we started trying to figure out

how far Id have to go to accomplish cheating on her in my present

condition!!!!!

then i shot myself

cya