Re: Re: Return to Camp Baughman ROSE

[Guest guest]

Deaer Rose

I would love to meet up at Baughmans again just about now, maybe we could tag team him and have a dual appt. You have to admire him though dont you? at least he takes the time to respond to even emails , no matter the answers are brief and might not get to each and every question....... hes one of the best in this regard ... kudos to dr baughman.. a plus for patient communication.

im sure i will see him again someday maybe our appts will coincide anotgher time.

ive surely missed hearing from you rose,

take care

kim

[Guest guest]

Dear Kim, I'm sorry for not writing sooner. I read your post about doctors & was quite impressed.

How are the kids? Are the twins adjusting to college life? Is Mom adjusting to college life?

I don't know if you saw my message about my treatment plan. Baughman thinks that I need to stop the MTX for awhile to see if my symptoms are from active disease or from scarring & previous damage. If it's previous damage, Cytoxan or Remicade, etc., aren't going to reverse that. If it's active disease, then the drugs should at least slow or stop progression of symptoms & maybe reverse some of them. I talked it over with my local neuro, prayed about it, and decided to stop the MTX. It may take 2-3 months to know if there if a significant worsening of my symptoms. I'm going to make a chart of the current symptoms, so that I can compare & also ask family & friends to compare. I am also tapering off the Lyrica I take for neuropathic pain. Several doctors have commented that I'm taking drugs that can affect memory & mental ability. So I talked it over with Larry the Neuro (I just realized my two top docs are Larry & Bob, like Larry the Cucumber & Bob the Tomato in Veggie Tales. If you have never watched Veggie Tales, they are hilarious kids' videos.) at my Monday appt. He felt like the only drug that was a likely culprit was the Lyrica. So I'm tapering off. I know my feet will get worse, but I want to get this checked out once and for all. I really don't think it's the meds, but I could be wrong & that would be the easist way to get some brain function back. I just have to look for alternative ways to cope with the neuropathic pain.

So that's where I'm at right now. I'm thinking of you every day & watching for that email address! But don't push yourself too hard, sweet pea. Love and prayers from Indiana,

Ramblin' Rose

Moderator

From: NeuroSarcoid66@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Return to Camp Baughman ROSEDate: Wed, 15 Feb 2006 10:08:27 EST

Deaer Rose

I would love to meet up at Baughmans again just about now, maybe we could tag team him and have a dual appt. You have to admire him though dont you? at least he takes the time to respond to even emails , no matter the answers are brief and might not get to each and every question....... hes one of the best in this regard ... kudos to dr baughman.. a plus for patient communication.

im sure i will see him again someday maybe our appts will coincide anotgher time.

ive surely missed hearing from you rose,

take care

kim

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[Guest guest]

dear rose

interesting approach to stop the meds to see if there is active disease. isnt it awful that there isnt a better way than that? I have been wodnering lately with all this new research about sarc and the process of the formation of hte granulomas and all, sorry im tired now and wont be so informative or elequont, but why arent there or are there?? , some new blood tests to show disease activity with the tnf activity or whatever that remicade blocks for example. i mean it just seems if they know so much more about how sarc granulomas form now and the disease process itself, there simply MUST BE a way to tell if the disease is active or not thats more predictive than ace levels and such.

so anyone have any info on that cause i surely havent had much luck looking it all up. or deiphering what i am reading is probably more the problem.

and now on to the subject of cytoxan and remicade not working on old damage. i know he says that remicade will not work on old damage. but i thought cytoxan would, that it crossed the blood brain barrier and would help with "old damage". i will have to pay attention to the tape again. or ask the question again. i am probably confused as usual and nothing making sense.

your plan sounds like a good one and it sounds like you have all your ducks in a row in a way that makes sense for trying to decide whther or not to go onto another stronger medication and how to decipher if its maybe drug side effects or disease activity thats causing the troubles your experiencing and prove it to your drs and insurance people so you can get approval for the more pricey meds when the time comes i guess.

keep in mind when tapering the neurontin at least, i always felt like symptoms got worse before getting better. i did feel that drug made alot of my neuro symptoms like burning , electric feelings very bad...and i was right... i hated that medication. but most people have no troubel with it. i knew it was the med though cause when they would increase it to make the trouble go away it would get worse instead of better. when i decreased it though to get off, i also went through troubles of worsening symptoms through each decrease, if i stuck with it though it got better, and when i was off the drug the symptoms went away. i had had these symptoms before being on the neurontin, from teh sarc.. then they went away with treatment, but then they came back and the drs kept increasing the neurontin and the symptons got worse each time, i just felt it was from teh neurontin. those burning electric feelings went away for a long time.

but rose be careful coming off the meds, if you start feeling symptoms you get to the dr....and get back on the meds.

why isnt there a way by now to tell if our disease is active or not without putting us at risk? this just isnt really okay...... is it?

love to you and worried for you......

kim

[Guest guest]

dear rose

interesting approach to stop the meds to see if there is active disease. isnt it awful that there isnt a better way than that? I have been wodnering lately with all this new research about sarc and the process of the formation of hte granulomas and all, sorry im tired now and wont be so informative or elequont, but why arent there or are there?? , some new blood tests to show disease activity with the tnf activity or whatever that remicade blocks for example. i mean it just seems if they know so much more about how sarc granulomas form now and the disease process itself, there simply MUST BE a way to tell if the disease is active or not thats more predictive than ace levels and such.

so anyone have any info on that cause i surely havent had much luck looking it all up. or deiphering what i am reading is probably more the problem.

and now on to the subject of cytoxan and remicade not working on old damage. i know he says that remicade will not work on old damage. but i thought cytoxan would, that it crossed the blood brain barrier and would help with "old damage". i will have to pay attention to the tape again. or ask the question again. i am probably confused as usual and nothing making sense.

your plan sounds like a good one and it sounds like you have all your ducks in a row in a way that makes sense for trying to decide whther or not to go onto another stronger medication and how to decipher if its maybe drug side effects or disease activity thats causing the troubles your experiencing and prove it to your drs and insurance people so you can get approval for the more pricey meds when the time comes i guess.

keep in mind when tapering the neurontin at least, i always felt like symptoms got worse before getting better. i did feel that drug made alot of my neuro symptoms like burning , electric feelings very bad...and i was right... i hated that medication. but most people have no troubel with it. i knew it was the med though cause when they would increase it to make the trouble go away it would get worse instead of better. when i decreased it though to get off, i also went through troubles of worsening symptoms through each decrease, if i stuck with it though it got better, and when i was off the drug the symptoms went away. i had had these symptoms before being on the neurontin, from teh sarc.. then they went away with treatment, but then they came back and the drs kept increasing the neurontin and the symptons got worse each time, i just felt it was from teh neurontin. those burning electric feelings went away for a long time.

but rose be careful coming off the meds, if you start feeling symptoms you get to the dr....and get back on the meds.

why isnt there a way by now to tell if our disease is active or not without putting us at risk? this just isnt really okay...... is it?

love to you and worried for you......

kim

[Guest guest]

I used Turbo tax last year & it was very easy. It was

also free for me because of my income bracket. Ditto

on the state. I haven't looked at this years because

my independent insurance money was so small & I didn't

have them take out those taxes. They would only

withhold almost the entire check & I need that

extra.That's my 2 cents on taxes & that's about what's

in my wallet. LOL

grannylunatic@...

__________________________________________________

[Guest guest]

I used Turbo tax last year & it was very easy. It was

also free for me because of my income bracket. Ditto

on the state. I haven't looked at this years because

my independent insurance money was so small & I didn't

have them take out those taxes. They would only

withhold almost the entire check & I need that

extra.That's my 2 cents on taxes & that's about what's

in my wallet. LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Jan

I don't think I've met you. Congrats on the new

grandbaby! I have 3 but they're all teenagers now.

Hope you continue to feel better. My sarc is in the

brain & cns so far nowhere else.

grannylunatic@...

__________________________________________________

[Guest guest]

Jan

I don't think I've met you. Congrats on the new

grandbaby! I have 3 but they're all teenagers now.

Hope you continue to feel better. My sarc is in the

brain & cns so far nowhere else.

grannylunatic@...

__________________________________________________

[Guest guest]

Jan

I don't think I've met you. Congrats on the new

grandbaby! I have 3 but they're all teenagers now.

Hope you continue to feel better. My sarc is in the

brain & cns so far nowhere else.

grannylunatic@...

__________________________________________________