I got so involved I never even asked LOL is a biopsy ( muscle ) perhaps the only other way for a DX ?

Hey there pretty butterfly! Chest Xrays showed my sarcoid. Then I think they did a CT after that, then the bronchoscopy to confirm (it was in my lungs...and of course, everwhere else too). The bronchoscopy is a biopsy. That's when I got my 'true' 'official' DX. Not sure how they test for Neurosarc? Hopefully someone on here will have a better answer for you. Are you in the US?
The traveling pain you feel is very common for me as well. It sucks! Somedays it's my hands, somedays just one arm. Pain to try to use it, shooting pains randomly. I didn't realize at first that it had anything to do with sarcoid. Being on here & doing some reading has lead me to believe it all is part of the sarcoid (with some exceptions that are caused from the Protien C Deficeincy). I feel like I sleep and my little pain maker has a party in my body. Where ever the 'party' is when I wake up in the morning is where the pain gets to hang out today. Tomorrow's a diff story.

I'm sorry you are going through this. Hang in there!
Maria

I think they can test for neuorsarcoid without a biopsy. they use brain and spine biopsy as a last resort. I think they can get MRI or CT scan to look for gandulomas of spine and brain.

If you have other involvment (skin, eyes, lungs, mucle or joint) you ACE enzyme would be elevated.Thats a clue. Also its much easyer to biopsy muscle or lungs than spine or brain.

i wake up every day with pain in different places. i'm so glad i'm not nuts. its almost always in my hands but it could be low back on day. Kneese the next , then hands, feet and shoulders the next.

good luck on your dx!

WOW , So I'm not CRAZY ! I feel alittle better... It's so random from day to day in me I never know where's its gonna be or for how long.I to have it alot in my hands,almost electric tinges,from elbow - shoulder its the muscle hard to lift my arm. I am in the US,I live in south Florida.My FEET,Hands,Legs from knees down chest,upper back back of neck shoulders are horrible.I also get weakness on one hole side I did 4 mths of PT last year for left side weakness felt like how a stroke is described. ? for u guys ::: I get what I call HOT SPOTS they dont last long,a few hours at most or 15 - 20 mins,I get them behind both knees whitch last the longest it can go on for 2 or 3 months,hands fingers,feet,forearms 20 mins to a few hours.Has either of you expirenced this ? I'm so glad I found this forum the other one I was useing,Dont compare,& I can make more since of how I feel here,Thanks guys !! xxxx mommies4

I get those hot spots too but i thought for some reason that it had to due with my meds. Maybe not? It got worse after i started methotrexate.

If its not the meds i'm guessing skin involvement?

weird! i will have to ask my rhummy about this one LOL

I've had the hot spots for a few years,never to know what causes them,even before I started any medication.I dont take Methotrexate.I thought it might have something to do with nerves. ?? I also have had for about 4 years now,these lines that appear on the inside of my left arm starting just above the wrist that go sidways up about 2 to 3 in. kinda looks like I've sleep with my arm twisted,there deep.I can even try to pull the skin tight but clearly it dont pull them out,dont hurt just there.Dont last long either1/2 hour at most but come and go havent had it in over a month now.No one can tell me what it is.they go away to fast for a Doctor to see them.Just drives me crazy I dont know what it is. xx mommies4

i get those same lines on my fingers! it looks really weird. I just had an EMG yesterday and they said i don't have nerve involvment but i do have muscle involvement. I wonder if its nerves or not. i would think so!

Thats so strange ! Next time it happens I'll try and take a good picture of it and send it to you ... I went onto one of the Sarc. sights looking for as much info and Inspire I'm blown away at the SX that i've come across along with you and doulbedeez,I'm getting more sure of myself and it being more poss. that this may be my problem. You've been a great help so Thank you sooo very much.. xxxx mommies4

your very very welcome! thats cool that your getting alot of good info. i hadn't heard of it until i was diagnosed LOL now i'm learning more

Neuro sarcoid sometimes can be diagnosed with an MRI.. in fact, i am going in on the 21st to get an MRI done on my brain to see if there is anything visibly wrong there as well as meeting with a neuro doctor.. im very nervous.. i also kno there are surgeries like biopsys ect they could do or a lumbar puncture or whatever its called..

@ Emilyswain I've had many MRI's since April of last year due to my ( Psseudotumor ) but living in Florida,its not untill your almost half dead before they want to help you ! With the Mri what exactly are they looking for ? I have CD's of my scans that show my hydrocephalus I have alot of muscle involvement,pain,weakness,ect... I have an LP shunt Put in sept. 22 2010 My CSF has been normal.

It sure helps knowing other people are going thru the same thing.Knowing I'm not the only one that has 'traveling' pain is great for me mentally...doesn't stop the pain but at least I know I'm not imagining it or crazy!
Mommies4, if you suspect the brain might be involved then i would shoot for an MRI. What kind of a doc are you seeing now? (hemotologist, neurologist, pulmonologist???) My Pulmonoligist & hemo has done the best tests on me to get the most accurate results. Since it is my lungs that are primarily involved I am not very well schooled on the neuro end of things (but I think I'm going to have to become because I feel more and more like my brain doesn't function the way it should anymore). Good luck!
Talk soon! Maria

i'm getting an MRI of spine and spinal tap here withing the next month. NOT LOOKING FORWARD TO IT. LOL

Mommies! i hear ya , i had to be almost dead before anyone took me seirously LOL

i dont really know what they are looking for,, i just know that i am getting one done soon and meeting with the neurologist.. i have never went before i usually go to a pulmonologist for sarc. a endocronologist for PCOS & a orthopeadic & reumatologist for my CHD & other pains .. so i have no clue what to expect when i go.

Hi everyone ! hope your all having a mild to pain free day (: I take it daily,make the best of it,and try not to rip anyone's head off in the proccess ! @ doubledeez No we only seem crazy when we really do feel all the pain,its hard i think for a Doc who has not walked in our shoes to truely understand how bad it can be,thats when they look at us like we are crazy,come on Doc your face says it all ! I seen a Neuro 3 x a month ago but he was crazier then my pain and have decided not to go back to him ! I have Neurosurgon that put my shunt in,hes not much help either ,he only want to make sure theres no falt in the shunt itself he dont want to and has said he dont treat headaches,& I have a GP who I see I really like her and she is trying really hard to figure this out with me.Other then that I'm as stuck to the wall as paint is ! @ rayfoof the spinal tap itself is uncomfortable,hurts alittle just stay still it will be over before you know it. However I myself have the aftermath of the Dreadful Spinal Headache and by far it is one of the worst ones to expirence,try to lie flat for upward of 8 hours after,Ice packs for the top of the head and back of the neck are very helpful,best wishes on the tap,everyone is different and you may not expirence as great as pain as i did,I sure hope not for you,that headache lasted for 5 days ! @ emilyswain good luck on your testing xxxmommies4