neuro-sarcoidosis

General Topics

Moderators: JohnV, Arron, garym

neuro-sarcoidosis

Postby muppetdog on August 10th, 2013, 3:31 pm

Ok, this is probably a pretty stupid question, but hey, that's what I'm good for.

Any way, what do you guys know about neuro-sarcoidosis. I have been dealing with a sudden progressive upswing in neuropathy type symptoms in my feet, legs, hands, forearms and sometime other parts. I have been doing the twitching, fatigue, buzzing, sick dance for 22 months and am still looking for answers because my condition seems to be debilitation at times. Just assume I have seen a bunch of Dr's so far, which is true.

I have been reading about neuro-sarcoidosis. I know sarcoidosis is more of a lung thing but and I don't hear many people complain about breathing problems on this board - I don't have any ether - but it kind of piqued my interest. It seems like it's really hard to diagnose, sticks around for a couple years and you can get pretty bad neuro symptoms - if that is how it chooses to manifest - while suffering with it. I guess a lot of people can be asymptomatic.

So, what do you all know about it - let the flood gates open: Tests; people that have had it; people you know that have had it; anything.

Thanks in advance to the AboutBFS brain trust.

MD
User avatar
muppetdog
Selfless giver of time
Selfless giver of time
 
Posts: 224
Joined: March 30th, 2012, 2:53 pm
Location: Colorado

Re: neuro-sarcoidosis

Postby chrissi on August 10th, 2013, 3:41 pm

My uncle died of it ( lung/ neuro/ eyes) and I saw it day after day. You can move on with your thoughts, this is a dead end.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: neuro-sarcoidosis

Postby muppetdog on August 10th, 2013, 3:45 pm

Here's a pretty good primer.

http://www.medlink.com/medlinkcontent.asp

Clinical manifestations:

Neurologic disease can be the presenting feature of sarcoidosis or can develop during the course of known sarcoidosis. Neurosarcoidosis tends to occur within the first 2 years of illness onset. Patients can have several neurologic manifestations, but after presentation, it is relatively unlikely that new categories of neurologic disease will develop. Not uncommonly, patients with a sarcoidosis-associated peripheral neuropathy can present with their neurologic disease as the initial feature of sarcoidosis (Said et al 2002).

Neuropathies can take the form of entrapment syndromes, pure sensory (Zuniga et al 1991) or motor (Godwin 1990) axonal disorders, sensorimotor axonopathy, mononeuritis, and mononeuritis multiplex (Scott et al 1993). Reports of an acute or subacute demyelinating motor neuropathy with a presentation similar to the Guillain-Barré syndrome have raised the question of the relationship between sarcoidosis and the Guillain-Barré syndrome (Miller et al 1989; Zuniga et al 1991; Said et al 2002; Faboum et al 2009). Sarcoidosis-associated neuropathies can be of acute or chronic onset. The clinical course may be monophasic, chronically progressive, or remitting-relapsing. The neuropathy is not usually, but can be, painful (Zuniga et al 1991). A patient with painful sensory mononeuropathies evolving to a symmetric sensory neuropathy has been described (Dreyer et al 2004). Patients may also develop subclinical mononeuritis multiplex (Challenor et al 1984) or multifocal motor nerve conduction block (Kono et al 2013).

The sensory or motor loss associated with a neuropathy is dependent on the specific nature of the disturbance. For instance, an intercostal neuropathy or radiculoneuropathy has been described with dermatomal sensory loss (Reshad et al 1993; Burns et al 2002; Uzawa et al 2009). Hypoventilation has been associated with phrenic neuropathy (Robinson et al 1998). A “neuromyopathy” characterized by fatigue, myalgia, and areflexia and associated with selective inflammation of intramuscular nerve fibers has been described (Gemignani et al 1998). Clinically it may be difficult to distinguish a widespread mononeuritis multiplex from a generalized sensorimotor neuropathy.

A recently recognized entity associated with sarcoidosis is small fiber neuropathy, which may present with somatic or autonomic symptoms (Hoitsma et al 2002). Somatic manifestations include painful paresthesias and dysesthesias that often occur in a non-length dependent manner in which the face, trunk, or arms are more affected than the distal lower extremities (Tavee and Culver 2011; Khan and Zhou 2012). Autonomic involvement varies, and symptoms may include gastrointestinal disturbances, bowel or bladder dysfunction, heart rate abnormalities, or orthostasis, depending on which fibers are affected..



Chrissi - Ok, I will do just a bit more reading but I am sure you're probably right. I just can't deal with the debilitating night-time neuropathy stuff at this point.
User avatar
muppetdog
Selfless giver of time
Selfless giver of time
 
Posts: 224
Joined: March 30th, 2012, 2:53 pm
Location: Colorado

Re: neuro-sarcoidosis

Postby chrissi on August 10th, 2013, 4:06 pm

The thing that defines sarcoidosis is the existence of those little " granulosums" in the body. I can tell you that my uncle never had fascicuations, npr were his sx changing like the ups and downs of BFS. See I had a really rough time with my BFS and especially the pain part( the skin on my legs was often burning so bad I could not wear pants and socks for whole dayss, thank god I am self- employed...). I mean really, it was bad. But even in my darkest BFS days I never felt that it was anything like neuro sarcoidosis. I think the severity of some diseases does not come across by the written word in the internet. But once you have seen it with your own eyes, you know that it is a totally different thing.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: neuro-sarcoidosis

Postby muppetdog on August 10th, 2013, 4:55 pm

Chrissi -

Sorry about your uncle, and thanks for the input. I guess it must be worse in reality than than it looks on paper. I can see that.
User avatar
muppetdog
Selfless giver of time
Selfless giver of time
 
Posts: 224
Joined: March 30th, 2012, 2:53 pm
Location: Colorado

Re: neuro-sarcoidosis

Postby chrissi on August 11th, 2013, 3:19 am

Yes. Truly. If I compare my very worst BFS days stuck to the couch not even able to work for more than 10 minutes with all that weird stuff going on, it was still very very different. I now read the descriptions and compared with the sx I saw, and yes, the descriptions do not show what it really is.
I know quite some sarcoidosis sufferers by now and this disease has 1000 faces, but none of those looks like us.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
User avatar
chrissi
Saint
Saint
 
Posts: 1538
Joined: August 10th, 2011, 2:06 am
Location: Germany

Re: neuro-sarcoidosis

Postby muppetdog on August 11th, 2013, 11:55 am

Thanks as always Chrissi

I, just for curiosity reasons, went on some of the sarcoidosis forums. There were a couple on there that had twitching, nerve pain and strange sensations different parts of their bodies. I guess you can twitch from anything. Some were asymptomatic in parts of there bodies but it would flare in others like the neuro side without the pulmonary side. It looks like it would be hard to diagnose because, like you said, they have to find those granulomas; and in order to do that, they have to take some biopsy of something.

I guess I will ask the Dr and maybe she can set me straight. I am just trying to find out why I am so sick 22 months into what has been going on. I really can't stand the foot and hand burning an nerve pain at this point, My sleep has been shot because of it and the fatigue has been really fun. I don't fit the "I'm worried so I twitch" profile that 90% of the folks on this board seem to fit so I am just still looking.

Again thanks
MD
User avatar
muppetdog
Selfless giver of time
Selfless giver of time
 
Posts: 224
Joined: March 30th, 2012, 2:53 pm
Location: Colorado

Re: neuro-sarcoidosis

Sponsor

Sponsor
 


Return to General Topics

Who is online

Users browsing this forum: No registered users and 1 guest