and the hits just keep on a comin VOLII

[Guest guest]

So yesterday I waited all day for the neuro to call me back after thee

happy little episode I had experienced earlier that day, (see and the

hits just keep on a comin VOLI to fully enjoy this little novella) By

the time the evening was over I was feeling pretty good, after all the

neuros office hadnt thought what happened was so bad that they had to

call right away so I must be

ok....................................................................

................................WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

8aM THis morning I recieved a call from his office which doesnt even

open until 9, it was his nurse, no jnot just any nurse, but the top

dog, you know the one, she knows everytning that goes on and get s

anything he wants done taken care before anybody else e ven has a

chance to scratch their heads, she wants me in his office as soon as

possible! Well now, that just about shoots the crap out of my happy

happt joy joy feelings, so I wiggled my tail in there as soon as I could!

Usually I can read a situation pretty well by the demeanor of the

peolple involved, and this mornings sit. was relaxed for the most part

when I walked in, by th time I had been in the office for 1/2 hour,

and the nurse practicioner had spent that time examining me, relaxed

went away and hurried concern replased it,,,,,,,,,,by now happy happy

joy jopy had been rreplaced with OH ^$$$^$^!!!! whats going on!!!

By the end of my little visit my neuro sarc which had been rediagnosed

as systemic sarc two or three months ago was re-diagnosed as CNS with

a major inflamation of the nerve root in the spinal

column.................................................DAMN

Not the answer I wanted,,,,,,,,,,,,,,,,,,,,,,,,really really not the

answer I wanted!!!

After a billion and four blood tsets, scheduling a lumbar puncture for

next week as well as appts. with my rheumy and neuro for the same day

next week (NEVER NEVER DONE!!!), and a trip to urgent care for a load

of solumedrol, I am home, feeling a bit used up and not feeling

particularly up beat. Ah the joys of Sarc!!!!!

YA GOTTA LOVE THIS STUFF

Talk at you guys later, Im goin to

bed,,,,,,,,,,,,,,,,,,,,,,,,,,,,after a stiff drink!!

[Guest guest]

Been-there-done-that surely fits here. lol, Sorry that you are going through so much crap, And I hope that the stiff drink helped you to get a good nights sleep at least. Lots of Love Lynnelizzyandstu wrote: So yesterday I waited all day for the neuro to call me back after theehappy little episode I had experienced earlier that day, (see and thehits just

keep on a comin VOLI to fully enjoy this little novella) Bythe time the evening was over I was feeling pretty good, after all theneuros office hadnt thought what happened was so bad that they had tocall right away so I must beok...................................................................................................WRONG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!8aM THis morning I recieved a call from his office which doesnt evenopen until 9, it was his nurse, no jnot just any nurse, but the topdog, you know the one, she knows everytning that goes on and get sanything he wants done taken care before anybody else e ven has achance to scratch their heads, she wants me in his office as soon aspossible! Well now, that just about shoots the crap out of my happyhappt joy joy feelings, so I wiggled my tail in there as soon as I could!Usually I can

read a situation pretty well by the demeanor of thepeolple involved, and this mornings sit. was relaxed for the most partwhen I walked in, by th time I had been in the office for 1/2 hour,and the nurse practicioner had spent that time examining me, relaxedwent away and hurried concern replased it,,,,,,,,,,by now happy happyjoy jopy had been rreplaced with OH ^$$$^$^!!!! whats going on!!!By the end of my little visit my neuro sarc which had been rediagnosedas systemic sarc two or three months ago was re-diagnosed as CNS witha major inflamation of the nerve root in the spinalcolumn.................................................DAMNNot the answer I wanted,,,,,,,,,,,,,,,,,,,,,,,,really really not theanswer I wanted!!!After a billion and four blood tsets, scheduling a lumbar puncture fornext week as well as appts. with my rheumy and neuro for the same daynext week

(NEVER NEVER DONE!!!), and a trip to urgent care for a loadof solumedrol, I am home, feeling a bit used up and not feelingparticularly up beat. Ah the joys of Sarc!!!!!YA GOTTA LOVE THIS STUFFTalk at you guys later, Im goin tobed,,,,,,,,,,,,,,,,,,,,,,,,,,,,after a stiff drink!!

To My New Family

Love Lynne

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[Guest guest]

Stu,

I know the feeling == man, don't let this be CNS-- and what can they do...

I do hope that your neuro and your rheumi are up on the alternatives to the solu-medrol, prednisone route. Although you'll need to taper off the steroids- if they get you on Methotrexate, Imuran, Arava, Humira, Enbrel or Remicade-- Plaquenil, etc-- a combination of them-- introducing one at a time-- then it is possible to get this bugger back in it's box.

Do hang in there, and I hope that you enjoy that stiff drink!

To better days,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Thanks Tracie:

Fortunately I have found (finallllllllllyyyyy) a good Neuro who turned

me onto a good Rhuemy. I was supposed to start on Methotrexate

several months ago but my Vitamin D level was dangerously low so I

hav3 been on high dose Vit. D capsules until last week when they

finally ran out. I see both of the Docs this Wed. and with a little

luck and a push from the big guy upstairs am expecting to start the

Methotrexate then, the onlly big worry about that is that my liver

function tests havent been consistent, sometimes shooting out of sight

then going right back to normal, (sarc??????), but as long as its ok

right now they will start the new med. If not then I will have to go

through an insurance appeal for any of the other drugs available as

they arent listed as treatment for sarc, and since my wife works for

the ins company I can tell you that they wont make it easy, sometimes

taking as long as 6 months before making a decision, and usually going

against the patient and their docs!

So we keep on praying to avoid that pitfall.

take care,

Stu

>

> Stu,

> I know the feeling == man, don't let this be CNS-- and what can they

do...

> I do hope that your neuro and your rheumi are up on the alternatives

to the

> solu-medrol, prednisone route. Although you'll need to taper off

the steroids-

> if they get you on Methotrexate, Imuran, Arava, Humira, Enbrel or

Remicade--

> Plaquenil, etc-- a combination of them-- introducing one at a time--

then it

> is possible to get this bugger back in it's box.

> Do hang in there, and I hope that you enjoy that stiff drink!

>

> To better days,

> Tracie

> NS Co-owner/moderator

>

>

> **************************************

> See what's free

> at http://www.aol.com.

>

[Guest guest]

I don't mean to butt in here but my vitamin D level was also low about a month ago at 21.6 and my endocrinologist prescribed 50,000 IU every two weeks. I was a little concerned since sarcoidosis pts have to watch their vitamin D and calcium intake. So, I talked with my rheum, my pcp, and my doc from s Hopkins Sarcoidosis Clinic and was told to NOT take that much at one time since it can cause problems. So, I was placed on vitamin D 400 IU twice a day. Just an fyi since I don't know how much you were taking. lizzyandstu wrote: Thanks Tracie: Fortunately I have found (finallllllllllyyyyy) a good Neuro who turned me onto a good Rhuemy. I was supposed to start on Methotrexate several months ago but my Vitamin D level was dangerously low so I hav3 been on high dose Vit. D capsules until last week when they finally ran out. I see both of the Docs this Wed. and with a little luck and a push from the big guy upstairs am expecting to start the Methotrexate then, the onlly big worry about that is that my liver function tests havent been consistent, sometimes shooting out of sight then going right back to normal, (sarc??????), but as long as its ok right now they will start the new med. If not then I will have to go through an insurance appeal for any of the other drugs available as they arent listed as treatment for sarc, and since my wife works for the ins company I can tell you that they wont make it easy,

sometimes taking as long as 6 months before making a decision, and usually going against the patient and their docs! So we keep on praying to avoid that pitfall. take care, Stu > > Stu, > I know the feeling == man, don't let this be CNS-- and what can they do... > I do hope that your neuro and your rheumi are up on the alternatives to the > solu-medrol, prednisone route. Although you'll need to taper off the steroids- > if they get you on Methotrexate, Imuran, Arava, Humira, Enbrel or Remicade-- > Plaquenil, etc-- a combination of them-- introducing one at a time-- then it > is possible to get this bugger back in it's box. > Do hang in there, and I hope that you enjoy that stiff drink! > > To better

days, > Tracie > NS Co-owner/moderator > > > ************************************** > See what's free > at http://www.aol.com. >

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[Guest guest]

Stu,

I'm so glad that you finally got both a Neuro and Rheumi to help you.

Make sure to invest and TAKE the Milk Thistle Capsules. This is proven to reverse cirrhosis and helps detox the liver, many Oncologists have their liver cancer patients use it.

It was incredible, a dear friend of mine used it all thru her cancer--stomach and liver, along with a lifetime of childhood Hodgkins - which she survived the radiation that they had just started to use back in the 1960's. It fried the rest of her body, but she lived to 53-- and it was the side effects of the radiation that killed her. Her liver was fine even tho she did have liver cancer.

My LFT's are all normal now that I'm on the Remicade. I do take 4 Milk thistle capsules daily, and my GP is all for it.

Take care,

Tracie

NS Co-owner/moderator

PS. Imuran, Arava, MTX, Plaquenil, Cytoxan, Cyclosporin are all approved for sarcoidosis.

************************************** See what's free at http://www.aol.com.

[Guest guest]

Oh great! My bone doc has me on 50,000 vitamin D a week.grannylunatic@...

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[Guest guest]

Woo! All of my docs have recommended 400 IU twice a day, which would be 5600/week. Might be a good idea to have your doc explain the rationale for that high a dose.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: and the hits just keep on a comin VOLIIDate: Tue, 22 May 2007 03:09:30 -0700 (PDT)

Oh great! My bone doc has me on 50,000 vitamin D a week.grannylunatic (AT) yahoo (DOT) com

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[Guest guest]

The bone doc prescribed the vitamin D after my bone density scan & some blood tests he did. I'm on Actonel also.grannylunatic@...

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