Relapsing remitting vs chronic progressive

April 9, 2007

As I read more and more post, it appears that many here have a

chronic – progressive (CP) form of NS. Personally, and perhaps

fortunately, I believe the NS that I have is more of a relapsing –

remitting (RR) form at the current time. I might go months or even a

year or two between major flares, even though there may be minor

events in between whose symptoms are more of an annoyance than

anything.

My background:

My first flare hit my peripheral nervous system about 16 years ago

and left me with diminished feeling in my fingers & toes. This is

more of a minor inconvenience than anything else even though it

sometimes tests my patience when I try to manipulate small parts or

tools. Another major flare around 10 years ago was far more

worrisome as it affected my eyes. I recovered fully, or at least I

thought that I did, until another flair around 6 years ago. That

flare resulted in 30 months of doctor visits, multiple tests, and a

diagnosis of `depression' despite having no clinical signs of such.

Sadly, the untreated illness resulted in permanent damage in the form

of chronic diplopia. Now almost every flare affects my already

compromised vision. I realize that the damage may increase with each

subsequent flare. I also realize that other affected organs which

have been asymptomatic up to this point may become problematic as the

damage accumulates during subsequent flares.

That said, I figure that the more I know, the better off I will be

able to deal with what possibly lies ahead…as if anyone could know.

With MS, resource shows that the majority of patients with RR will

convert to CP within 10 years. I'm wondering if there is a similar

correlation with NS. I haven't located any information on the

internet related to this topic so I thought that I would ask you, the

real experts, some questions:

- What form of NS do you have?

- Anyone else with a long term (>10 years) RR form?

- For those of you with a chronic form of neurosarc…did you start

with the RR form?

- How long before your symptoms became chronic?

Thanks for sharing…peace to all.

April 9, 2007

Tony, that's an interesting perspective. I don't know where I'd fit in. I was initially diagnosed with sarc in 1994 when a chest xray showed enlarged hilar nodes. A biopsy of the nodes confirmed sarc, but my lungs were clear & I had no symptoms, so was told that it would probably go away on its own. Ha! Anyway, I pretty much forgot about it. In 1999, within a 6 mo. period, I lost hearing in both ears and had a left facial palsy, which were all blamed on viruses. No one, including myself, thought of NS. The palsy resolved, I got hearing aids, and went on for another year. Then the second big shoe fell--sudden onset of fatigue, muscle weakness, weird sensations on my face. That was Nov. 2000, and I've never recovered, despite 2 years of Pred & Imuran and another 2 years of MTX. My disease is not believed to be active now, and I'm on no treatment. I don't feel any worse without treatment, but no better, and I worry about the sarc monster popping up somewhere else without warning. I will be going to see a top sarc specialist, Dr. Baughman in Cincinnati, in a couple of months, and I'm looking forward to his opinion.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Relapsing remitting vs chronic progressiveDate: Mon, 09 Apr 2007 16:10:11 -0000

As I read more and more post, it appears that many here have a chronic – progressive (CP) form of NS. Personally, and perhaps fortunately, I believe the NS that I have is more of a relapsing – remitting (RR) form at the current time. I might go months or even a year or two between major flares, even though there may be minor events in between whose symptoms are more of an annoyance than anything.My background:My first flare hit my peripheral nervous system about 16 years ago and left me with diminished feeling in my fingers & toes. This is more of a minor inconvenience than anything else even though it sometimes tests my patience when I try to manipulate small parts or tools. Another major flare around 10 years ago was far more worrisome as it affected my eyes. I recovered fully, or at least I thought that I did, until another flair around 6 years ago. That flare resulted in 30 months of doctor visits, multiple tests, and a diagnosis of `depression' despite having no clinical signs of such. Sadly, the untreated illness resulted in permanent damage in the form of chronic diplopia. Now almost every flare affects my already compromised vision. I realize that the damage may increase with each subsequent flare. I also realize that other affected organs which have been asymptomatic up to this point may become problematic as the damage accumulates during subsequent flares.That said, I figure that the more I know, the better off I will be able to deal with what possibly lies ahead…as if anyone could know. With MS, resource shows that the majority of patients with RR will convert to CP within 10 years. I'm wondering if there is a similar correlation with NS. I haven't located any information on the internet related to this topic so I thought that I would ask you, the real experts, some questions: - What form of NS do you have? - Anyone else with a long term (>10 years) RR form? - For those of you with a chronic form of neurosarc…did you start with the RR form? - How long before your symptoms became chronic? Thanks for sharing…peace to all.

Can’t afford to quit your job? – Earn your AS, BS, or MS degree online in 1 year.

April 9, 2007

mY SARcoidosis started 17 yrs ago, with my lungs and bilateral iritis. I went onto a prednisone regime, 80mg daily, down to 60 and the then weaned off over 2 1/2 yrs. I still had Stage 2 pulm sarc-- but my eyes were "ok."

For the next 5 yrs, my docs said I had severe arthritis of my spine and hips and neck-- along with fibromyalgia.

Turns out those FM trigger points are sarc granulomas. The bone spurs along my spine are sarc-- and when they press on the nerves-- hell would be a good place to be..

About 4 yrs later, the iritis came back, and so did the lung issues. My ACE was 240-- and my CRP was 1.1. The ESR that shows arthritis was negative. But the systemic inflammation was horrible. I ran a constant fever, and still do-- daily. (I have run a lowgrade fever for the last 8 yrs.) This keeps me sitting at the edge of being chronically dehydrated-- so we watch my electrolytes with CBC's and LFT's once a month. My blood sugars went up to 280+-- and so the peripheral neuropathy was made worse. I had also developed small nerve fiber neuropathy.

Needless to say-- that fatigue issue can knock me on my butt.

For me, relapse was short lived, and so the chronic progressive is where i'm at. I do have STage 4 pulm fibrosis from the sarc-- so my lungs are compromised.

MS is quite different from NS. With MS, the demylination happens at the spinal column, with NS-- it hits our nerve ends first== so fingers and toes are the first to show signs.

MS also has major research going on, and can be controlled. My cousin was dx with it 4 yrs ago-- and she did a 2 yr course of immunotherapy, and now shows no sign of it. We pray it stays that way.

Where MS and NS are similar is that we have many of the symptoms, but our spinal fluid won't have the "bands" that MS has. Either way, if we don't stop the progression, we could also lose the muscle strength and control.

Chronic inflammation is a robber of muscle and ligaments. It destroys them. So any amount of simple stretching or walking you can do is to your benefit.

I know that there is an article in the ARCHIVES on chronic progressive sarcoidosis-- and hopefully that is what it says in the subject lines.

Take care,

Tracie

NS Co-owner/moderator

************************************** See what's free at http://www.aol.com.

April 14, 2007

I am glad that I have found this site as I felt like I was going nuts since January with not being able to use my fingers like I use to. It is the wierdest thing where you do not have strength to open things or feel like something is not connected right so that you can use your fingers. I have had a hard time opening up boxes, containers, envelopes and it is so frustrating on top of the floundering for words and short term memory loss and other maladies.

I am so thankful that I found this site by accident. I thought I was going nuts.

Thanks

KatSee what's free at AOL.com.

April 14, 2007

I’ve

had Sarc since 1994, been in and out of remission, until about 2001, but in fall

o f 2003 I’ve been dealing with NS. So no remission since 2001 and it

doesn’t appear that will happen as NS symptoms continue on. I have been

on Methotrexate since 2003 with Plaquanil, my insurance refused Remicade so I am

just hanging in there, good days and bad days. But I was blessed with a

healing in 11/2005, now this probably doesn’t make much sense, but the

healing turned out to be spiritual, more then physical however, it took the

chronic fatigue away and has not returned, so I can’t complain, I can now

get through a whole day without napping or feeling just dead by 3pm. I can

take the rest of it, at least so far.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Tony

Sent: Monday, April 09, 2007 10:10

AM

To: Neurosarcoidosis

Subject:

Relapsing remitting vs chronic progressive

As I read more and more post, it appears that many

here have a