Re: Idiopathic hypopituitarism

[Guest guest]

I was diagnosed with it several years ago. I was informed by my physician that it is a common occurrence with sarcoidosis!! -Maye (Baltimore)To: Neurosarcoidosis Sent: Tue, May 18, 2010 6:28:04 AMSubject:

Idiopathic hypopituitarism

Hi all,

This is my first post to this forum. I have hypopituitarism but my MRI shows no structural abnormalities. In light of having some strange, transient and worsening neurological symptoms, I'd greatly appreciate some feedback as to whether this is a common occurrence for neurosarcoidosis (i.e. normal MRI but with biochemical hypopituiarism)?

Cheers

[Guest guest]

Thanks for your response... I'm just wondering if there was any sarcoid evidence

on MRI scans of pituitary?

[Guest guest]

I don't know about hypopituitarism as being "common" but what is common is that many of us have totally normal MRI's and still have NS.

So much of NS is transient in nature-- so it wouldn't show up on MRI's or CT's. We can and often do have vasculitis-- inflammation of the blood vessels-- and the neurological deficits will be transient-- the effects will depend upon what nerves are being impinged at the time of testing.

Neuropsych testing is actually a great way for them to see what is going on. Each of the tests requires a different part of the brain to function to complete the task. It seems that alot of us end up with short term memory issues, problem solving, multi-tasking loss, personality changes, all frontal lobe (executive cortex) functions-- that come and go. This would be directly the result of vasculitis.

I know that many of us have hormonal issues, due to adrenals being effected not only by the sarc, but also by the prednisone that is the primary drug of choice. There are now studies out that show that when sarcoidosis is treated with prednisone, then the pred is withdrawn, a large portion of those of us that were on pred-- will have a relapse and additional body systems involved with sarcoidosis.

You can find some of those studies in our MESSAGE ARCHIVES AND LINKS. Just go to the bottom section of this email-- to the area called NEUROSARCOIDOSIS COMMUNITY, and you will see the links to that part of our site!

I do hope this helps,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tue, May 18, 2010 3:28:04 AMSubject: Idiopathic hypopituitarism

Hi all,This is my first post to this forum. I have hypopituitarism but my MRI shows no structural abnormalities. In light of having some strange, transient and worsening neurological symptoms, I'd greatly appreciate some feedback as to whether this is a common occurrence for neurosarcoidosis (i.e. normal MRI but with biochemical hypopituiarism)? Cheers

[Guest guest]

Hi ,

That's really interesting. I recently saw a neurologist and he thinks that it's

either chronic silent migraine or neurosarcoidosis. My symptoms are just

bizarre and include the one's you mentioned. I also have persistent blurred

vision and cognitive fog, which varies in severity, as well as on-and-off

tingling on the right side of my face and in my hands. I have had an xray of my

lungs, blood tests and am getting a lumber puncture next week. Interestingly,

with the hypopituitarism cortisol deficiency was doubted but in light of

persistent symptoms I was put on a physiological dose to see if it helped. I

felt better for a couple of months on 5mg prednisolone, but then had a turn. At

that time my serum calcium was measured and came back slightly higher than

normal, but this was considered - and perhaps rightly so - to be nothing of

concern. My inkling is that they won't find anything concrete and will regarded

it as migraine... but I really don't think that that's what it is...

>

> I don't know about hypopituitarism as being " common " but what is common is

that many of us have totally normal MRI's and still have NS. 

> So much of NS is transient in nature-- so it wouldn't show up on MRI's or

CT's.  We can and often do have vasculitis-- inflammation of the blood

vessels-- and the neurological deficits will be transient-- the effects will

depend upon what nerves are being impinged at the time of testing.

> Neuropsych testing is actually a great way for them to see what is going on. 

Each of the tests requires a different part of the brain to function to complete

the task.  It seems that alot of us end up with short term memory issues,

problem solving, multi-tasking loss, personality changes, all frontal lobe

(executive cortex) functions-- that come and go.  This would be directly the

result of vasculitis. 

> I know that many of us have hormonal issues, due to adrenals being effected

not only by the sarc, but also by the prednisone that is the primary drug of

choice.  There are now studies out that show that when sarcoidosis is treated

with prednisone, then the pred is withdrawn, a large portion of those of us that

were on pred-- will have a relapse and additional body systems involved with

sarcoidosis. 

> You can find some of those studies in our MESSAGE ARCHIVES AND LINKS.  Just

go to the bottom section of this email-- to the area called NEUROSARCOIDOSIS

COMMUNITY,  and you will see the links to that part of our site!

> I do hope this helps,

> Tracie

> NS Co-owner/moderator

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Tue, May 18, 2010 3:28:04 AM

> Subject: Idiopathic hypopituitarism

>

>  

> Hi all,

> This is my first post to this forum. I have hypopituitarism but my MRI shows

no structural abnormalities. In light of having some strange, transient and

worsening neurological symptoms, I'd greatly appreciate some feedback as to

whether this is a common occurrence for neurosarcoidosis (i.e. normal MRI but

with biochemical hypopituiarism)?

> Cheers

>

[Guest guest]

you got me. What is this you are talking about/ Words I never heard

before.

Idiopathic hypopituitarism

> Hi all,

> This is my first post to this forum. I have hypopituitarism but my MRI

> shows no structural abnormalities. In light of having some strange,

> transient and worsening neurological symptoms, I'd greatly appreciate some

> feedback as to whether this is a common occurrence for neurosarcoidosis

> (i.e. normal MRI but with biochemical hypopituiarism)?

> Cheers

>

>

>

> ------------------------------------

>

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> The Neurosarcoidosis Community

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[Guest guest]

Idiopathic means they don't know what is causing the problem. Hypo means low. Pituitarism is the pituatary gland-- which is a primary gland that controls many of the hormone signals.

So-- this means that the cause of low pituatary hormones is unknown.

Transient means the issues come and go.

Many times we have issues with Transient Ischemic Attacks-- meaning that we have a tiny, intermittent blood clot that will give us the symptoms of a stroke-- and is a HUGE signal that you could be getting ready to have a full blown stroke-- but by the time you get into ER-- the symptoms have resolved, and no blood clot shows up anywhere! This member (share your first name please- we'd like to not have to refer to you as it ) was put on pred to see if it'd help with her problem, and doesn't show any granulomas or abnormal appearance to the pituatary gland.

That as we all know is not at all unusual-- the microscopic changes may not show up, and if it is swollen blood vessels, that would not show up on CT's or MRI's. So the problem is there-- without a known cause.

Hmm, sounds like NS....

Take care,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Tue, May 18, 2010 8:42:17 PMSubject: Re: Idiopathic hypopituitarism

you got me. What is this you are talking about/ Words I never heard before. Idiopathic hypopituitarism> Hi all,> This is my first post to this forum. I have hypopituitarism but my MRI > shows no structural abnormalities. In light of having some strange, > transient and worsening neurological symptoms, I'd greatly appreciate some > feedback as to whether this is

a common occurrence for neurosarcoidosis > (i.e. normal MRI but with biochemical hypopituiarism)?> Cheers>>>> ------------------------------------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>>> 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]

That's uncanny, I went to the ER for the first time three weeks ago because the

neurological symptoms suddenly intensified, but they found nothing.

Thank you so much the insight. I'm more and more convinced that it's

neursarcoidosis. I have hypopituitarism, neurological symptoms and my

endocrinologist has told me he thinks it's autoimmune. I sure am hoping common

sense will prevail if they don't find anything concrete...

Will keep you updated,

Sherrie

[Guest guest]

Sherrie,

Thank you, I love having a name to put with your posts!

One thing I want to STRESS-- IF YOU ARE HAVING SIGNS OF A STROKE-- GET INTO THE ER.

Even if it's not neurosarc, or even if it's not a stroke-- this is one issue you don't want to ignore. Strokes and even TIA-- Transient Ischemic Attacks-- can leave you with permanent loss of function. If you get treatment within the first "Golden Hour" with the TPA clot buster-- the success rate of you recovering from a stroke is extremely high!

I know that we have the Seven Signs of a Stroke in our ARCHIVES-- and I highly suggest that every single member print it out, post it on the refrigerator, and make it a habit to read it often.

Many of our meds raise our blood pressure, and even with the use of blood pressure meds- we can find ourself having problems.

There is a wonderful book written by a neurophyscian, neuroscientist. The title is MY STROKE OF INSIGHT. She had a stroke in her late 30's and even though her proffessional career has been is studying the effects of strokes and brain injuries-- she found herself unable to dial 911-- she had no idea what the buttons on the phone were. She did however, manage to find her business card in a stack of cards on her desk-- and "matched" the squiggly lines on the card to the squiggly lines on the phone-- and called her office, where they sent help via 911 to her!

Her story is incredible, and a true lifesaver for so many-- even my MD was totally blown away when I gave her a copy to read-- it humbled her to realize that her attitude of "well dummy, call 911" was in error-- it may not always be possible!

Blessings to all,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Wed, May 19, 2010 3:24:43 AMSubject: Re: Idiopathic hypopituitarism

That's uncanny, I went to the ER for the first time three weeks ago because the neurological symptoms suddenly intensified, but they found nothing. Thank you so much the insight. I'm more and more convinced that it's neursarcoidosis. I have hypopituitarism, neurological symptoms and my endocrinologist has told me he thinks it's autoimmune. I sure am hoping common sense will prevail if they don't find anything concrete... Will keep you updated,Sherrie