Re: Does this sound like anyone else's symptoms?

April 4, 2004

Hi Neil,

Yes, sarcoid returns and when it does it usually goes systemic. I am

glad your doctor has referred you onwards. You may wish to get a few

blood tests such as an CBC, ESR, CRP, ACE, Ca, Biochem, LFT, - these

are indicators of inflammation, raised calcium, biochemistry, liver

function, and sarcoidosis markers. They will help your doctor be able

to tell you what is going on with your body.

I would also strongly recommend a brain MRI, MRA both with diffusion

weighted sequences.

I have the same thing just happen with me, except I have never had

the chest involvement before. I started out with pure neurological

symptoms and I now have respiratory symptoms also. I see my

ophthalomologist tomorrow for more on going stuff.

MS scares you more than Neurosarcoid? I would actually think the

other way around. There is far more research into MS than there is NS

and NS both can be deadly. With either illness you have to fight for

your life and get on top of the disease fast. You can beat both of

them. You can get well. It has been done with both diseases. Avoid

prednisone long term as that can give you a multitude of problems

long term and don't believe the " You will be disabled for life "

thing. You may be, but you may also heal. You must fight.

Some reference reading I recommend:

http://www.medlineplus.com (look up neurosarcoidosis, prednisone,

whatever you wish)

http://www.elderwyn.com/neurosarcoidosis that has the basics to get

you started on a path of wellness, but isn't updated any longer.

I urge you to get fast and immediate action to stop the disease

activity from spreading and word towards a cure. May your path to

wellness be gentle.

Blessings,

Aisha.

> 3 Years ago Next July I went down with an awful cough, which

although

> it had cleared by the time I saw the chest specialist, was

diagnosed

> as Sarcoidosis. This was confirmed with a biopsy. I had some

> involvement in my lungs and bilateral hilar lyphadenopathy. This

> resolved without steroids. Last August I was discharged as there

was

> no evidence of sarcoid.

>

> A few months ago I developed a tingling and numbness in my hands.

> Particularly in the night and morning. I visited a doctor and was

> told it was Carpal Tunnel Symdrome. (Fine I spend a lot of time on

> the computer so that makes sense as does the pattern of symptoms.)

>

> Then however I developed the same tingling and numbness in my feet

> and lower legs. This was subsequently followed by tingling

sensations

> around the scalp and face. I also got an unexplained bad cough. Not

> as bad as the initial one.

>

> I saw the Chest specialist this week. My lungs are clear. But I

have

> been referred on to a Neurologist. The Chest Specialist told me

that

> the cases of Neurosarcoid he had seen had presented with it (I

> didn't) and it was usually in just one nerve.

>

> The question I have is this. Are my symptoms consistent with

> Neurosarcoidosis as others know them? I otherwise feel fine. Except

> for some anxiety.

> I'd appreciate some feedback. Sarcoid doesn't scare me as much as

the

> prospect of MS.

>

> Neil

April 4, 2004

Hi Neil,

Yours sounds very similar to the path I've gone down with NS. My hands, fingers, ankles, andfeet are very numb. This is in part because of the granulomas in the joints and ligaments.

What I find interesting is that recently my CT showed addl grans in my lungs and lymphs, which can put pressure on the nerves of my spine where the lungs connect to the spine, and this is the same area that controls feeling in hands/feet.

As far as the fear of having MS or NS-- neither one is a cakewalk. However, there is alot study and meds available for MS that can arrest the disease and stop the progression-- with NS, we don't have that kind of care.

The tests to determine this are the same, MS has some very definate markers, NS doesn't so NS becomes a diagnosis by ruling out the other possibilities.

Go to http://www.elderwyn.com/neurosarcoidosis/ and read Aisha's article. It will make this whole process make more sense.

Sincereley,

Tracie

April 4, 2004

Neil, I was first diagnosed with sarc in 1994 after a cxr for heart

arrhythmia showed enlarged hilar nodes; biopsy was positive for sarc. I was

told it would probably go away on its own & I pretty much forgot about it.

I did have an echocardiogram and pulmonary function tests at that time. 5

years later, in a span of 6 months, I had hearing loss in both ears & a left

facial palsy, all attributed to viruses. A year later, I had sudden onset

of several weird symptoms--intense itching of my eyes, feeling like cobwebs

on my face, fever/chills, severe fatigue, weight loss (too tired to eat). I

had an eye exam, which was normal, and told AGAIN that it was a virus. A

couple of months later I started having severe pain in both legs, muscle

cramps everywhere, balance problems, worsening muscle weakness, tremors, &

feeling like pieces of tape stuck to the bottoms of my feet. I finally got

sent to a neurologist, who thought it was neurosarc. But because my ACE,

spinal tap, brain MRI, etc. were all normal, he didn't want to treat. Over

the next few months, I had another left facial palsy, the tape on the feet

became widespread & constant, I developed burning pain in my feet, worsening

balance problems; heck, I know there were more symptoms but I can't remember

them all now. Anyway, I went to see Dr. Stern in Atlanta, who diagnosed me

with neurosarc, systemic & pulm sarc & recommended treatment. I have never

had an elevated ACE level, so pfffftttt to that. Neurosarc is such a

frustrating disease because there can be so many symptoms that seem

unrelated, and downright weird, and many doctors are totally uninformed

about it. The course of the disease is unpredictable and the treatments can

seem worse than the disease, except you have no way of knowing what shape

you'd be in without the treatment. I'm currently on Prednisone 10mg daily

and Imuran (an immune system modulator) 50mg 3x/day. I'm hoping to get into

a Remicade trial here in Indiana. I'm been off on disability for about

6months & doubt I'll ever be able to return to my work as a nurse-midwife.

When you see the neurologist (if you haven't already; I'm way behind on my

email!), take a list of questions & someone to go with you & make sure you

get every question answered before you leave the office, including

explanations in plain English. Sorry for such a long letter. This is why

I'm known as Ramblin' Rose

Does this sound like anyone else's symptoms?

> 3 Years ago Next July I went down with an awful cough, which although

> it had cleared by the time I saw the chest specialist, was diagnosed

> as Sarcoidosis. This was confirmed with a biopsy. I had some

> involvement in my lungs and bilateral hilar lyphadenopathy. This

> resolved without steroids. Last August I was discharged as there was

> no evidence of sarcoid.

>

> A few months ago I developed a tingling and numbness in my hands.

> Particularly in the night and morning. I visited a doctor and was

> told it was Carpal Tunnel Symdrome. (Fine I spend a lot of time on

> the computer so that makes sense as does the pattern of symptoms.)

>

> Then however I developed the same tingling and numbness in my feet

> and lower legs. This was subsequently followed by tingling sensations

> around the scalp and face. I also got an unexplained bad cough. Not

> as bad as the initial one.

>

> I saw the Chest specialist this week. My lungs are clear. But I have

> been referred on to a Neurologist. The Chest Specialist told me that

> the cases of Neurosarcoid he had seen had presented with it (I

> didn't) and it was usually in just one nerve.

>

> The question I have is this. Are my symptoms consistent with

> Neurosarcoidosis as others know them? I otherwise feel fine. Except

> for some anxiety.

> I'd appreciate some feedback. Sarcoid doesn't scare me as much as the

> prospect of MS.

>

> Neil

>

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April 4, 2004