Re: New to the group and sarcoidsosis

[Guest guest]

Hi Jeff,

yes this is very frustrating, I have many times stopped and pulled over while

driving because I did not know where I was, I would just sit there, and didn’t

even remember I had a cell phone to call home or somewhere, then a light would

go by and I’d remember, I have been diagnosed with neurosarc, by process

of elimination, neg CT, neg spinal tap, etc… however I also have very

weak legs, sometimes unable to lift them up off a chair, I am now looking like

a drunk, tripping, or I kind of loose my balance and spin around to get it,

hard to explain, I am in the process of fighting our insurance for the

medication my doctor thinks I need, and by the way, my primary always fighting

for me doc is my pulmonologist, I just love him, he said he would send me to a

specialist, but believes now after 13 years of treating me he is a specialist, I

agree, so you never know, my neurologist is OK but does not call the shots.

You have

found a wonderful place to be, here is a wonderful Sar family that will support

you, help you with questions, and so many other things, I just could not say

enough good about the people you will meet here, so welcome and know that you

are not alone with these crazy symptoms, some days I wonder if I’m losing

my mind, my husband now calmly says no it’s just the Sarcoid! Blessings,

Marla

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

Sent: Monday, October 22, 2007

8:24 AM

To: Neurosarcoidosis

Subject: New to

the group and sarcoidsosis

Hi

was recently diagnosed with pulmonary sarcoidosis 4 months ago

after they saw many small enlarged lymph nodes in the chest, 2 large

lymph nodes which they biopsied and two small lesions in both lung

bases. My recent eye exam shows leasions in both iris's.. but not

the nerve yet. My biggest complaint is that this all started in

jan when I became lost while driving and couldn't find the right word

for things. Cognative dysfunction. short term memory loss, executive

functioning poor. Then I was diagnosed with Narcolepsy and

cataplexy. What?....... I've went from hardly needing any sleep to

being sleepy all the time. that was my first diagnosis the

sarcoidosis came second. So it only seem likely that the sarc

affected my brain stem that controls my sleep cycle and caused or set

off the narcolepsy. While nothing is showing up on any mri/ctscan,

spinal tap. I still have these memory issues and functional issues

that frustrate me and my family. my neurologist while he suspects

that I may have neurosarc, will not begin treatment without having

something show up on some kind of test. I told him that by the time

it shows up the damage will be than likely be permenent. He said I

could get a second opinion from a neurosarc specialist. But first

i'm seeing the sarcoid specialist at Pennsylvania

hospital. the only

problem is he is a lung doc and not neuro. So i'm not sure he is

going to treat because lung wise, i'm really not that severe unless

my new ct and mri show advancements in the size and number of lymph

nodes as well as nodules/lesions in my lungs. this is very

frustrating.

Jeff

[Guest guest]

Jeff,

Have your doctor refer you to the sarcoidosis clinic at s Hopkins. That's where you need to go. When you make your appointment, ask about if there is a separate neuro sarc clinic. Good luck and sorry you have to be one of us, but glad to meet you. Doesn't make sense to me either and I typed it!!! Bonnie BSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Jeff,

Welcome to the group-- we are all in this together, and have so many wonderful knowledgable people to help you with your questions.

When you stated you were having problems falling asleep-- narcolepsy - the first thing that came to mind was to have your pulm order a sleep study for you. You could be developing sleep apnea-- and that will drop you sound asleep behind the wheel of a car--- not a good thing at all!

At night, our saturation levels drop even more than during the day-- and it's easy to be having those lungs filling up with carbon dioxide-- and you may be having numbness in the extremities because of it??

Your neurologist needs to order Neuropsych testing-- this shows what parts of the brain are being effected by the sarc. Many times (most times) we don't show anything on xrays or tests. They haven't figured out what to test for - yet. The MRI's, CT's and spinal taps can be clear-- and we still can't remember where we are. What happens is that we end up with vasculitis-- and it can be intermittent. So you may have memory problems that effect short term issues one day, and then be fine the next. You may have a day that you can't problem solve, or multi-task, and then be fairly functionable shortly after. What is happening is that the blood vessels swell, putting pressure on a nerve pathway, and that stops the function of that pathway. Take some anti-inflamatories, and you're better. Stop the medication, and you find the problem advancing.

The MD's love to give us prednisone -- and yeah, it takes the inflammation down fast--- but with you already showing signs of multi-systemic disease-- you need more than just prednisone.

Plaquenil, Methotrexate, Imuran, Arava, all have shown to be helpful with different systems. My lungs respond to the Plaquenil, my joints and spine need the Methotrexate for the sarcoidosis-induced arthritis. My brain has responded well to Remicade.

You will find that it will take a custom cocktail of meds that will suppress your immune system to keep this from advancing. You are right, waiting to see what comes up on tests is not necessarily a good idea. However, if the neuro is ordering tests--- spinal taps, MRI's, EEG's, EMG's-- then wait it out. He has to rule out other diseases-- MS, Lupus, Rheumatoid arthritis-- and so that he can treat you for NS. This is a diagnosis of elimination-- eliminate the others, and this is what is left.

You stated also that your eyes are involved. It is imperative that you keep up with your MD- Ophthalmologist (not the OD!!!!) so that if you develop iritis or uveitis that it doesn't go into an acute glaucoma. If you find that you become light sensitive (photophobic) that is a sign of inflamation of the iris or uveal tract. If your eyes are dry, use the artificial tears as often as needed-- you can't over do them.

Again, welcome to the gang,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Bonnie, who do you see there?Blessings,Beckyquiltenbe@... wrote: Jeff, Have your doctor refer you to the sarcoidosis clinic at s Hopkins. That's where you need to go. When you make your appointment, ask about if there is a separate neuro sarc clinic. Good luck and sorry you have to be one of us, but glad to meet you. Doesn't make sense to me either and I typed it!!! Bonnie BSee what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

I have also had these symptoms and assumed it was from medication. My

kids thought it was amusing when I thought I was on one road when

actually I was on another. They still don't understand why I have to

drive a new route many times before I can remember it. My older son

worries about my problems with words. He thinks it's Alzheimer's or

something. Don't know how to explain it to them.

[Guest guest]

I saw Dr. Moeller, but that was a few years ago. They want me to go again, but, just can't get into it right now. You know what I mean?? The nerves leading up to the appointment, the hope that it wil go okay,the long drive there. The let down afterwards when you really don't get anywhere. I did get a lot of affirmation from Dr Moeller though. He is very nice and did help me. My situation is a bit different from others. I need to mentally prepare myself to do that again. BOnnieB.See what's new at AOL.com and Make AOL Your Homepage.