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Goodness, who knew - neurosarcoidosis ....

587 Views 11 Replies 8 Participants Last post by  Raglet
hi all

I got a letter from my neuro yesterday, she is referring me for more tests post my recent nerve conduction studies. Well, that's fine, thanks for sending a copy of the referral to keep me up to date.

Imagine my surprise to read that I have 'documented neurosarcoidosis'. What the ....... ????? So I get busy with google, and start reading about myself. I have hunted forever for information that sounds like me in terms of all the weird brainstem problems, my tongue and swallowing problems, etc etc, but this neuroscarcoidosis just sounds like me. I have been around the block too many times with too many diagnoses and symptoms to get too excited (or worried) it's more that this just seems so weird. It can also cause problems in limbs, which may explain all these weird problems I am having with my arm (which now struggles to hold a knife at the dinner table).

Who knows, I certainly don't, and I have no doubt this is lupus doing its number on me. Of course, in a rare disease (neuroscardosis) I have to have the more unusual symptoms with my tongue and swallowing problems.

It's the 'documented' bit that gets me - when did it get documented, and why wasn't I told ? I am trying to figure out whether this is part of my lupus rather than something separate, and I strongly suspect that it is just part of my lupus. It always is. I am having all the right treatment for either disease, so that's no worry. My neuro repeatedly tells me that my rheumie is giving me the best possible treatment for all my neuro problems, which I know anyway (pred, plaq, cytoxan ,rituxan, etc etc).

This is just so weird. It reminds me of the time when I was having iv cytoxan, just kicking back reading my hospital file (the only good thing about cytoxan is access to my file). Well, I read a letter from another doctor that said 'she has developed a right sided facial drop'. Well I grabbed my iv pole, ran for the nearest mirror and yeap, there it was, a small facial drop on one side. Why the heck he didn't tell me I will never know.

I will stress that this is not common, my doctors generally keep me very up to date with what is going on, which is why I am finding this all very strange.

Also - documented - doesn't that mean 'has tested positive for' ?

hope you all had a fabulous weekend - I did, I've just got back from an overnight trip away, we had a blast. I have Monday/ Tuesday off work (yay!) which is just great.


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I am glad your over night trip was enjoyable. God knows you deserve to have some fun.

I have never heard of this disorder before. Now I am off to Google it too.:lol:

I understand what you mean about finding things out in a report instead of being told by the doctor. I am not sure why they do this?:mad:

Let us know how you get along and good luck.:wink2:
Raglet ive never heard of this either, maybe they didnt want or want to say anything till they know for sure, just a thought ,ireally dont know,
but i know one thing im sure ytou will be asking Questions

so glad you had a good time away though Lin xxx
Hi there :)

As you say, an odd way to find out. Maybe, as they say that God moves in mysterious ways and most docs think that they are God.... just a thought!

Anyway, I just hope that it doesn't keep getting worse whatever it is called,
I hate it when the doctors don't tell you something like that. Sometimes it can mean a difference in treatment or something... but even if not it feels like as the patient we should know what is diagnosed!
It doesn't in this case mean a change in treatment as it is treated by pred, plaq, methotrexate, cytoxan etc so I am ok there. I just can't find any links between it and lupus, even though it is a vasculitic disease, which is very weird.

The only thing I DON'T want is for this to suddenly snatch me out of the realm of my rheumie in terms of treating my neuro stuff, as she is just so good (fiendishly efficient in all directions in the way she operates).

I am putting in a call to my neuro, but she is absolutely hopeless in terms of returning calls so I will give her a week and then get my gp to give her a ring.


a rather confused raglet.
Hey Raglet,

That's really strange that you found out that way.... Have you asked any of your docs about it? Do they have any idea as to how long this has been "documented" for and why you weren't told?!

Your weekend sounds absolutely wonderful! Glad you had such a good time! :)


lin;522363 said:
Raglet ive never heard of this either, maybe they didnt want or want to say anything till they know for sure, just a thought ,ireally dont know,
but i know one thing im sure ytou will be asking Questions

so glad you had a good time away though Lin xxx
maybe they just didn't know how to pronounce it :rolleyes:
Glad you had a good trip as well.Brain Stem is easy to say.
I wonder do they mean they have documented evidence (i.e. clinical symptoms) of neurosarcoidosis as opposed to a definitive diagnosis? Just a quick read up of it seems to suggest that a definitive diagnosis can only be carried out by performing a brain biopsy. In the meantime you are presenting with lots of the classical symptoms of this so this is their best educated guess?

I just read on Wikipedia that some American Acress Karen Duffy wrote 'Model Patient - My life as an incurable wise-ass' on her experiences with the disease. Might be worth getting it out at the library and having a read.

They dont seem to know the cause (much like Lupus I guess) but I found this

The causes of sarcoid disease are not clear. Current evidence suggests that sarcoidosis is due to the abnormal proliferation of a certain cell called a T-helper cell, which functions to help immune cells attack a foreign substance. The abnormal proliferation of T-helper cells is thought to result from an exaggerated response to a foreign substance or to self cells (a condition referred to as autoimmunity, in which for unknown reasons, the body's natural defense cells attack normal cells in organs).

Its all part of that wonderful thing we call our immune system :rolleyes:

it would be interesting to hear what your Rheumy's take on it all is.

Best of luck
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maybe they just didn't know how to pronounce it :rolleyes:
ahahaha, that's a good one :lol:

I have an appointment with my gp this afternoon for something else (I need a referral for a reverse walker which give better posture control, and god knows i need that!) so I will take the letter with me and ask him.

From what I can see, with neurosarco-whatsit it is a dx of exclusion as the definitive dx is biopsy, and they don't do that with brains obviously. And I think I would remember if i'd had a brain biopsy. So they have to exclude other diseases that would do the same things (like lupus) and heck, seeing I have a cast iron lupus dx (classic bloods) then how to they add that up to another unconnected systemic vasculitic disease. The chances of me having two of them similtaneously seems to be a little slim.

this seems to be the story of my life - others are trying to get diagnosed or waiting for bloods to turn positive, I always seem to be trying to shake of diagnoses and I have given up waiting for my bloods to turn negative.
oh well, i've got two days off work so I am kicking back today and enjoying myself. Will catch up with a friend tomorrow ....

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Joan - sounds like we were posting at the same time, and thinking the same thing (or maybe your post was hiding over the page).

I will check today with my gp as to what 'documented' means - I really think this is still just lupus, and really don't have time for a new dx! Honestly I am not short of dx-es, I have thousands - anyone want a few ? Maybe I should trot over to the 'not diagnosed' forum and auction a few off (aren't I awful!)


I think my gp has solved the mystery. He said it is most likely a typo - my neuro will have dictated np-sle or neuro -psychiatric sle and the medical typist googled it in the medical dictionary and come up with neurosarcoidosis. It also explains why the woman on the phone when I rang the neuro this morning was so totally ****ty to me - she was probably the typist who made the error.

This feels about right to me - the only weird thing is that neuro-whatsit described my symptoms so well. But no, it's just lupus, it always is.


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