Re: thyroid

[Guest guest]

Sarc can effect the thyroid as well as the parathyroid glands. The parathyroids control calcium levels.

Why did they decide Cytoxan wasn't for you? I know you were doing well on it. What about the other BRM's? Enbrel, Humira or Remicade-- and now there is a new one-- don't know much about it. What about Imuran or Arava or Plaquenil and Methotrexate? Have they given these any thought.

So the MRI showed arthritis-- they use these same drugs for that. Check out

www.ArthritisToday.org or and look up the drug guide. There is so much wonderful info.

Here is an excellant article on sarcoidosis and the endocrine system, it includes all the glands that are controlled (including thyroid) and explains alot of what is going on.

http://qjmed.oxfordjournals.org/cgi/content/full/96/8/553 Print it out and take it with you to the Rheumi.

It sounds as if she wants to rerun all the tests and figure out exactly what is going on--- that's great if you have good insurance, but if you already have biopsy proven sarc-- it's not totally necessary.

I know she wants to make sure that nothing is "masking" what is going on-- so she doesn't get any false positives (or negatives) behind whatever autoimmune process is going on. She'll want to exclude all the other possiblities before she treats with more than pred.

I wouldn't worry about the "it's all in your head" theory-- just let her know that you want her to help you get this puzzle figured out-- and that you know that it's not in your head. If you are dealing with some depression, it would be secondary to whatever is going on-- not the root cause of what is going on.

Remember that you understand that with chronic pain, chronic illness that yes, depression can become an issue, and that you know that your seratonin and norephnephrine hormones can get whacked out by the chronic pain and disruption of sleep cycles, etc-- but that "if you knew what was going on with your body, and had some relief via treatment-- and Cytoxan was doing that; that you'd be alot more comfortable. With the previous doc, he wanted to go to the depression issue and blow off the sarc induced problems (arthritis) and you know that is not right." Don't back down-- work with her, talk to her, and let her know that you study on this disease--and you want her to be part of your healing team-- not the competition. Get her on your side!

Hope this helps,

Tracie NS Co-owner/moderator

thyroid

Hey Guys,Is the thyroid suseptible to sarcoid. I am still having lots ofnegative blood tests and MRI's but the vitamin D and thyroid are off. Iam starting up with this new rheumatologist and my first visit shebrought up the fact that one idiot thought it was in my head and alsosaid that I looked healthy as a horse. Doesn't bode well for me doesit?I am trying not to get upset; I am seeing her next week. She doesn'tknow that I know the MRI's just showed arthritis. Another doc let itslip (they were not aware I had not received the results yet) during avisit. She is going to let me have a prednisone IM injection but shewill discuss treatment with me next week.Please say a prayer for me that there will be some type of resolution. I have accepted the fact that I will not be able to get Cytoxan anymorebut there has got to be something out there for me. I had evenentertained the idea

during the cytoxan treatment that I may be able togo back to work or to school. That is out now....Well, thanks for listening guys. I really appreciate it.Terri G.

[Guest guest]

Terri, I am sorry you are going through all this, I can totally relate, I was taken off my Remicade due to high liver enzymes and had to have a liver biopsy yesterday, that was a real experience. and now I have to wait for results to see if I can go back on Remicade, I can't take Methotrexate anymore either. and since I've been off Methotrexate and Remicade many symptoms are returning, not fun. So I'm in the holding pattern too, not a fun place to be, but " it can only get better " right??

I will keep you in my thoughts and prayers Terri. Blessings, Marla

Hey Guys,

Is the thyroid suseptible to sarcoid. I am still having lots of

negative blood tests and MRI's but the vitamin D and thyroid are off. I

am starting up with this new rheumatologist and my first visit she

brought up the fact that one idiot thought it was in my head and also

said that I looked healthy as a horse. Doesn't bode well for me does

it?

I am trying not to get upset; I am seeing her next week. She doesn't

know that I know the MRI's just showed arthritis. Another doc let it

slip (they were not aware I had not received the results yet) during a

visit. She is going to let me have a prednisone IM injection but she

will discuss treatment with me next week.

Please say a prayer for me that there will be some type of resolution.

I have accepted the fact that I will not be able to get Cytoxan anymore

but there has got to be something out there for me. I had even

entertained the idea during the cytoxan treatment that I may be able to

go back to work or to school. That is out now....

Well, thanks for listening guys. I really appreciate it.

Terri G.

[Guest guest]

,

Thanks so much for the advice and the great info. I do not have proven

sarc. It is a presumptive diagnosis and the working diagnosis during

the cytoxan is lupus of the nervous system. I do not have proven lupus

of the nervous. The can't seem to prove anything. All of my sumptons

have now returned and it really sucks. I actually thought while I was

on the cytoxan that I may be able to go to work or back to school. Now,

I am lucky to get on errand done during the day and maybe make dinner at

night.

I did terrible on Imuran and she did mention cellcept when we spoke. I

think she is doing the steroid injection as a stop gap until we decide

what to do. I will probably have to go back to Hopkins again before she

will do a long term therapy for me. She wants me to see a rheumy there

in conjunction with Dr , the neurologist. I am just tired.

I am going to talk to her about the " all inyour head " theory and let her

know that she can speak to my therapist. When this issue first came up,

I told them to give me the meds to fix that problem but everyone backed

down on that. I will sign a release for them to talk. My anger at this

is just about sky high. I have been so sick that I have not been able

to have a life for over 4 years. I have two new grandchildren due next

year. Why wouldn't I want to be well so I could enjoy such a gift. The

medical system is such a friggin joke.

I hope our next visit will be more productive. I appreciate all the

info and will take it to her.

Thanks for everything.

Terri G.

>

> Sarc can effect the thyroid as well as the parathyroid glands. The

parathyroids control calcium levels.

> Why did they decide Cytoxan wasn't for you? I know you were doing

well on it. What about the other BRM's? Enbrel, Humira or Remicade--

and now there is a new one-- don't know much about it. What about

Imuran or Arava or Plaquenil and Methotrexate? Have they given these

any thought.

> So the MRI showed arthritis-- they use these same drugs for that.

Check out

> www.ArthritisToday.org or and look up the drug guide. There is so

much wonderful info.

> Here is an excellant article on sarcoidosis and the endocrine system,

it includes all the glands that are controlled (including thyroid) and

explains alot of what is going on.

> http://qjmed.oxfordjournals.org/cgi/content/full/96/8/553 Print it

out and take it with you to the Rheumi.

> It sounds as if she wants to rerun all the tests and figure out

exactly what is going on--- that's great if you have good insurance, but

if you already have biopsy proven sarc-- it's not totally necessary.

> I know she wants to make sure that nothing is " masking " what is going

on-- so she doesn't get any false positives (or negatives) behind

whatever autoimmune process is going on. She'll want to exclude all the

other possiblities before she treats with more than pred.

> I wouldn't worry about the " it's all in your head " theory-- just let

her know that you want her to help you get this puzzle figured out-- and

that you know that it's not in your head. If you are dealing with some

depression, it would be secondary to whatever is going on-- not the root

cause of what is going on.

> Remember that you understand that with chronic pain, chronic illness

that yes, depression can become an issue, and that you know that your

seratonin and norephnephrine hormones can get whacked out by the chronic

pain and disruption of sleep cycles, etc-- but that " if you knew what

was going on with your body, and had some relief via treatment-- and

Cytoxan was doing that; that you'd be alot more comfortable. With the

previous doc, he wanted to go to the depression issue and blow off the

sarc induced problems (arthritis) and you know that is not right. "

Don't back down-- work with her, talk to her, and let her know that you

study on this disease--and you want her to be part of your healing

team-- not the competition. Get her on your side!

> Hope this helps,

> Tracie NS Co-owner/moderator

>

>

>

> thyroid

>

>

>

> Hey Guys,

>

> Is the thyroid suseptible to sarcoid. I am still having lots of

> negative blood tests and MRI's but the vitamin D and thyroid are off.

I

> am starting up with this new rheumatologist and my first visit she

> brought up the fact that one idiot thought it was in my head and also

> said that I looked healthy as a horse. Doesn't bode well for me does

> it?

>

> I am trying not to get upset; I am seeing her next week. She doesn't

> know that I know the MRI's just showed arthritis. Another doc let it

> slip (they were not aware I had not received the results yet) during a

> visit. She is going to let me have a prednisone IM injection but she

> will discuss treatment with me next week.

>

> Please say a prayer for me that there will be some type of resolution.

> I have accepted the fact that I will not be able to get Cytoxan

anymore

> but there has got to be something out there for me. I had even

> entertained the idea during the cytoxan treatment that I may be able

to

> go back to work or to school. That is out now....

>

> Well, thanks for listening guys. I really appreciate it.

>

> Terri G.

>

[Guest guest]

Marla,

Thanks for the prayers and I will pray for you too.

Terri G.

>

> >

> > Hey Guys,

> >

> > Is the thyroid suseptible to sarcoid. I am still having lots of

> > negative blood tests and MRI's but the vitamin D and thyroid are

off. I

> > am starting up with this new rheumatologist and my first visit she

> > brought up the fact that one idiot thought it was in my head and

also

> > said that I looked healthy as a horse. Doesn't bode well for me does

> > it?

> >

> > I am trying not to get upset; I am seeing her next week. She doesn't

> > know that I know the MRI's just showed arthritis. Another doc let it

> > slip (they were not aware I had not received the results yet) during

a

> > visit. She is going to let me have a prednisone IM injection but she

> > will discuss treatment with me next week.

> >

> > Please say a prayer for me that there will be some type of

resolution.

> > I have accepted the fact that I will not be able to get Cytoxan

anymore

> > but there has got to be something out there for me. I had even

> > entertained the idea during the cytoxan treatment that I may be able

to

> > go back to work or to school. That is out now....

> >

> > Well, thanks for listening guys. I really appreciate it.

> >

> > Terri G.

> >

> >

> >

>

[Guest guest]

Terri, I believe there are specific markers that show Lupus--- but I know sarc doesn't have any. Many symptoms are common in both sarc and Lupus, and I know MS has specific protein markers in the spinal fluid, as well as specific changes in the brain that are significant for MS-- but aren't present with NS.

Ours is a diagnosis of elimination-- when they've run out of tests and answers-- and all the other AI diseases have been ruled out, they hesitantly give you the dx of NS.

I know for me, I have no signs of NS in my brain, but can't pass the Neuropsych tests-- so we know that whatever this is effects the frontal lobe of my brain- (executive cortex functions) where the problem solving, multitasking, personality, sexuality, stuff all gets processed-- so when I'm in flare-- my personality (I know, you've all experienced it) changes.

This can be caused by intermittent vasculitis-- where a blood vessel in the brain is inflammed, and the inflammation presses on a certain area, blocking the conduction to that area, thus changing the way I cope with a task at that time.

When the inflammation settles down, I'm back to a better functioning capability. Since vasculitis doesn't show up on any CT's or MRI's-- we can't see it, we can't biopsy it (hit and miss biopsy of the brain is not a good idea at all) so it is guess work to a big part.

The neuropsych tests do require specific parts of the brain to function to do the test at hand, and if there is some delay or inability to do that test-- then they know something is up, but not necessarily what that something is.

I have to laugh-- my neurologist told me that I don't have NS because there is nothing in my scans, but I do have nerve and muscle damage from the sarc, so even if the brain sends out the message to do something-- it may not get the signal to the legs or hands to do whatever-- as the nerve pathway is blocked. (This is also NS)

He thinks it is my other meds-- and the fact my thyroid is screwed up (I don't have one) and need meds to supplement the gland I no longer have and we can't get it synced up (hmm, NS screws with the hormones and endocrine system) and that this is my real problem.

I so wish he is correct. However, I'm not putting down any money on his theory. ...

And as our dear ie always said,

That's my story and I'm sticking to it,

Tracie

nS Co-owner/moderator

thyroid>>>> Hey Guys,>> Is the thyroid suseptible to sarcoid. I am still having lots of> negative blood tests and MRI's but the vitamin D and thyroid are off.I> am starting up with this new rheumatologist and my first visit she> brought up the fact that one idiot thought it was in my head and also> said that I looked healthy as a horse. Doesn't bode well for me does> it?>> I am trying not to get upset; I am seeing her next week. She doesn't> know that I know the MRI's just showed arthritis. Another doc let it> slip (they were not aware I had not received the results yet) during a> visit. She is going to let me have a prednisone IM injection but she> will

discuss treatment with me next week.>> Please say a prayer for me that there will be some type of resolution.> I have accepted the fact that I will not be able to get Cytoxananymore> but there has got to be something out there for me. I had even> entertained the idea during the cytoxan treatment that I may be ableto> go back to work or to school. That is out now....>> Well, thanks for listening guys. I really appreciate it.>> Terri G.>

[Guest guest]

Tracie,

I have had the neuropsych tests which shows I cannot multi task, slow

processing etc but since they can't find anything on MRI, it must be

psychosomatic. They really piss me off. Since my new rheumy is a

female, I am hoping when I speak with her next week that I can reach her

in ways I have been unable to with the male docs (the only exception is

my urologist). If she could just understand I don't want this

disability, that I want treatment to be able to function in my life. I

have had some positive test results, but they are positive then negative

then positive again.

Well, I appreciate your friendship and assistance and I will let you

know what happens.

Terri G.

>

> Terri, I believe there are specific markers that show Lupus--- but I

know sarc doesn't have any. Many symptoms are common in both sarc and

Lupus, and I know MS has specific protein markers in the spinal fluid,

as well as specific changes in the brain that are significant for MS--

but aren't present with NS.

> Ours is a diagnosis of elimination-- when they've run out of tests and

answers-- and all the other AI diseases have been ruled out, they

hesitantly give you the dx of NS.

> I know for me, I have no signs of NS in my brain, but can't pass the

Neuropsych tests-- so we know that whatever this is effects the frontal

lobe of my brain- (executive cortex functions) where the problem

solving, multitasking, personality, sexuality, stuff all gets

processed-- so when I'm in flare-- my personality (I know, you've all

experienced it) changes.

> This can be caused by intermittent vasculitis-- where a blood vessel

in the brain is inflammed, and the inflammation presses on a certain

area, blocking the conduction to that area, thus changing the way I cope

with a task at that time.

> When the inflammation settles down, I'm back to a better functioning

capability. Since vasculitis doesn't show up on any CT's or MRI's-- we

can't see it, we can't biopsy it (hit and miss biopsy of the brain is

not a good idea at all) so it is guess work to a big part.

> The neuropsych tests do require specific parts of the brain to

function to do the test at hand, and if there is some delay or inability

to do that test-- then they know something is up, but not necessarily

what that something is.

> I have to laugh-- my neurologist told me that I don't have NS because

there is nothing in my scans, but I do have nerve and muscle damage from

the sarc, so even if the brain sends out the message to do something--

it may not get the signal to the legs or hands to do whatever-- as the

nerve pathway is blocked. (This is also NS)

> He thinks it is my other meds-- and the fact my thyroid is screwed up

(I don't have one) and need meds to supplement the gland I no longer

have and we can't get it synced up (hmm, NS screws with the hormones and

endocrine system) and that this is my real problem.

> I so wish he is correct. However, I'm not putting down any money on

his theory. ...

> And as our dear ie always said,

> That's my story and I'm sticking to it,

> Tracie

> nS Co-owner/moderator

>

>