Diagnosing Sarc when on Immunosuppressants

[Guest guest]

Tracie,

I noticed in your reply to Darian that you mentioned prednisone

masking sarcoidosis in body systems. My son was diagnosed with

Crohn's Disease (which may, or may not, have really been sarcoidosis

presenting in the GI tract). His internist is trying to figure out

how to test him for neurosarc because so many of the symptoms fit.

But the problem is that he has been on immunosuppressants

(prednisone, methotrexate, and/or imuran) for four years now. The

doses used to treat " Crohn's " are lower than those used for

sarcoidosis, so these may not be slowing the disease. But our

internist internist thinks they may well be interfering with some of

the tests. E.g., his ACE test was normal, but that could be due to

the immunosuppressants.

We're going to do a lung x-ray, but he doesn't have pulmonary

symptoms and nothing may show up there. The biopsy from his Crohn's

disease shows granulomas that are " sarcoid " --the granulomas in

Crohn's are identical to those in sarcoidosis. But granulomas from

the GI tract usually aren't taken as diagnostic of sarcoidosis.

Anyone have thoughts as to other diagnostic tests that might work if

one has been on medium-dose immunosuppressants and the sarcoidosis

(if that's what it is) is manifesting just in the nervous system

(hard to biopsy) and intestines? Debby

[Guest guest]

His internist is trying to figure out

how to test him for neurosarc because so many of the symptoms fit.

Neuropsych testing would be good, along with TNF-a and TNF-b blood tests. (Tumor necrosing Factor) We produce to much TNF-b and our bodies don't clear it out as they should. This would show any cognitive changes, as well as hand/eye coordination, etc.

EMG's are not a big deal. What they will show is delayed response time in the muscle response to the brain-- and if there is a specific area that is impeded-- it would show up on the EMG. (For instance, my legs don't show the correct response in the reaction time to protect my balance).

It's not like they are implanting the electrodes, it is more that they have small electrodes on your extremities, and then give you a simple poke (not piercing anything) to see if you respond and the electrical current is timed from that point to the place in the brain that should respond.

Other tests they can do are listed in the Sarcoidosissharma.com website. I have others in the LINKS and ARCHIVES.

I'm assuming that his mD's have done the IGe and auto-immune antibody blood tests.

Unfortunately, we don't yet have any single test that confirms systemic or NS. So truly, they have to rule out the other autoimmune diseases and go from there.

Let us know if you need more help, we're here-- I'm fighting a flare myself, so if I don't get back to you the same day-- give me a day or so. I will answer as soon as I can

Blessings

Tracie

NS co-owner/moderator

[Guest guest]

Tracie,Just wanted to say something about you being in a flare too. There are so many of us that are flaring right now. Someone in an earlier post mentioned that Fall might be a problem for flares or something like that. Sure sounds like that could be a problem. Even tho we all live all over the place, there's too many of us that are having flares...yikes!Beckytiodaat@... wrote: In a message dated 10/7/06 12:49:45

PM Pacific Daylight Time, merritt.52 (AT) osu (DOT) edu writes: His internist is trying to figure out how to test him for neurosarc because so many of the symptoms fit. Neuropsych testing would be good, along with TNF-a and TNF-b blood tests. (Tumor necrosing Factor) We produce to much TNF-b and our bodies don't clear it out as they should. This would show any cognitive changes, as well as hand/eye coordination, etc. EMG's are not a big deal. What they will show is delayed response time in the muscle response to the brain-- and if there is a specific area that is impeded-- it would show up on the EMG. (For instance, my legs don't show the correct response in the reaction time to protect my balance). It's not like they are implanting the electrodes, it is more that they have small electrodes on your extremities, and then give you a simple poke (not piercing anything) to see if you respond and the electrical current is timed from that point to the place in the brain that should respond. Other

tests they can do are listed in the Sarcoidosissharma.com website. I have others in the LINKS and ARCHIVES. I'm assuming that his mD's have done the IGe and auto-immune antibody blood tests. Unfortunately, we don't yet have any single test that confirms systemic or NS. So truly, they have to rule out the other autoimmune diseases and go from there. Let us know if you need more help, we're here-- I'm fighting a flare myself, so if I don't get back to you the same day-- give me a day or so. I will answer as soon as I can Blessings Tracie NS co-owner/moderator

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[Guest guest]

I also am frustated by the diagnosis dilemma. I've gone through all the tests

but I have

been on lots of immunosupressants as well. My one neurologist said it doesn't

matter. My

symptoms are so sarcoid-like. He said it would be nice if they got a biopsy to

get a firm

diagnosis, but either way they would be treating it the same. They consider it a

diagnosis

of neurosarcoidosis by exclusion. It would be nice if they could point to a

specific test and

say " ah ha, this is it, definitely " but that's not the case for me, as least not

yet. He says that

is not uncommon with sacoidosis.

-

>

> In a message dated 10/7/06 12:49:45 PM Pacific Daylight Time,

> merritt.52@... writes:

>

>

> > His internist is trying to figure out

> > how to test him for neurosarc because so many of the symptoms fit.

> >

>

> Neuropsych testing would be good, along with TNF-a and TNF-b blood tests.

> (Tumor necrosing Factor) We produce to much TNF-b and our bodies don't clear

> it out as they should. This would show any cognitive changes, as well as

> hand/eye coordination, etc.

>

> EMG's are not a big deal. What they will show is delayed response time in

> the muscle response to the brain-- and if there is a specific area that is

> impeded-- it would show up on the EMG. (For instance, my legs don't show the

> correct response in the reaction time to protect my balance).

>

> It's not like they are implanting the electrodes, it is more that they have

> small electrodes on your extremities, and then give you a simple poke (not

> piercing anything) to see if you respond and the electrical current is timed

from

> that point to the place in the brain that should respond.

>

> Other tests they can do are listed in the Sarcoidosissharma.com website. I

> have others in the LINKS and ARCHIVES.

>

> I'm assuming that his mD's have done the IGe and auto-immune antibody blood

> tests.

>

> Unfortunately, we don't yet have any single test that confirms systemic or

> NS. So truly, they have to rule out the other autoimmune diseases and go from

> there.

>

> Let us know if you need more help, we're here-- I'm fighting a flare myself,

> so if I don't get back to you the same day-- give me a day or so. I will

> answer as soon as I can

>

> Blessings

> Tracie

> NS co-owner/moderator

>

[Guest guest]

Hi, . It is crazy, isn't it? I think my son's new neurologist

may be getting close to the point your doctor is at. He's testing

my son for MNGIE (one of the mitochondrial diseases that

particularly attacks the GI tract) and a few other mitochondrial

diseases. I think he will also do a few more NS tests. If all of

these are inconclusive, I think we'll just have to choose among

the " by exclusion " diagnoses and see if some treatment helps. I

think he does " get it " (as some previous doctors have not) that all

of these symptoms are real and, if we don't try *some* treatment, my

son will just suffer horribly for a few more years and then probably

die.

Here's a number I just calculated that blew my mind: Since my son's

most serious symptoms started two years ago, doctors, labs, and

hospitals have billed our insurance company $260,993.42 for visits,

tests, and hospitalizations attempting to diagnose this disease.

Isn't that an amazing number? I'm sure many of you have similar

ones. And that doesn't even count the cost of all the drugs they've

prescribed (mostly just to control symptoms), my reduced salary from

cutting back work to care for my son, traveling to doctors in other

states, etc. I'm very happy that we have good insurance, which paid

for most of this, but what really staggers me is the huge amount of

testing, illness, and suffering that number represents for my son.

And he still doesn't have a diagnosis or much in the way of

treatment! A lot of that money has been spent in specialists

shuttling us back and forth. It's all pretty depressing. And

that's not even counting the basic problem of being sick! Take care

everyone, Debby

[Guest guest]

Tracie,

Thanks very much for this info--it's very helpful. And I'm so sorry

to hear that you're having a flare from a disease that's pretty bad

even when not flared! Please take care of yourself.

For others who are considering emgs, though, I think it's important

to note that it sounds like you had a " surface emg. " That is a much

less invasive type of procedure than the tradional emg and nerve

conduction study. Most neurologists, though (at least in our area),

won't accept the surface emg and insist on the traditional one. A

conventional emg and nerve conduction study does require inserting

needles deep into several muscles and applying electric shocks.

Almost everyone finds this painful, and doctors themselves admit

that it's a " painful and invasive " test. For patients like my son,

with a small fiber neuropathy, everyone agrees that the test will

not only be painful while it's being done but that it will trigger

hours of burning, cutting pain in each of the areas where needles

are inserted (usually several different muscles in different parts

of the body). The doctors agree that this almost certainly will

happen. The only real question is whether those pains will become

permanent or will flare periodically in the future--as has happened

with other intramuscular needles (like last year's flu shot) that he

has gotten. So it's a pretty serious question for patients like my

son whether the emg will give enough info to be worth all the pain

and risks.

I'm really glad that your doctor was willing to settle for the

surface emg. You've given me a thought: I think I'll try to sell

our neurologist on at least trying that first! Hope you start

feeling better soon, Debby