Neurosarc??

Happy spring
I have been having some new symptoms and wondering if I should be concerned they are related to the sarc(have it in lungs and on skin). A few of my toes are feeling numb and my feet are burning. Also I have had trembling in my hands. My rheum dr. is sending me for a nerve conduction test for my feet, but should I be seeing a neurologist to rule out any connection to the sarc?? I don't want to blame everything on sarc...don't know what to think. Any guiding thoughts?? Thanks
Vickie

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Hi there,
I understand the numbness and burning I have it in my feet and hands and so far they say I have neuro-sarcoidosis. I also tremble, am dizzy and have brain fog. I am waiting for a nerve conduction test as well. I see a neurologist and he's confirming the neuro but not completely until I have a Biopsy which I have booked for next month. The neurologist has clinical proof (walks like a dog looks like a dog it must be a dog) but he needs physical hard proof of my diagnosis (the biopsy). That is just me I hope that yours is not neuro-sarcoidosis but a neurologist wouldn't hurt.

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You need to see a neurologist. I've been seeing one since my esophogus closed off a year ago which lasted for a month for no reason ( I could swallow), I have numbing in my index fingers, big toes and along the arches of my feet. I have migraines daily. I have had a medianascopy lymph nodes that confirmed sarc in lymph nodes, sarc in liver and issues with skin, back in Jan immediatly went on steriods. Skin cleared up. MRI in Feb confirmed sarc in the brain, centeralized brainstem area. We have begun treatment with that area, Pulmanary doc is directing all treatment, eventhough no involvement with my lungs. Which is very important, one focus point for all treatments. We are changing the treatment meds tomorrow since there is now change in feeling with the nerves, you have to be very agressive with the brain due to the high possibility of complications or death, especially with the brainstem area. Good luck!

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Sorry to hear of your new symptoms... I have neurosarc and it started with numbness and tingling in two toes. Over the course of two hears it progresssed up both legs to my waist. FINALLY, they found a lesion in my cervical spinal cord.

I've had three nerve conduction tests (EMG) -- which are for large nerve fibers only; I've been told that they won't detect the kinds of symptoms that we are experiencing which is small fiber neuropathy. (I also have small fiber neuropathy, which was found via skin biopsy.) I'm not sugggesting that you don't have the EMG; I think that it's important to rule out other issues, but don't be surprised if it comes back negative.

Just a personal opinion, but I would seek out a neurologist at this point. Please keep me posted!

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blessedmemaw
I was dx with neurosarc in 2001. It was at two places on my meningi, one at the base of the brain and the other at L5 on my spine. The inflammation was discovered after several MRI’s and the dx confirmed with a biopsy at the L5 site. My feet have been numb and I’ve had a burning sensation on the bottoms since before dx. Definitely sounds like you should seek a neurologist that has experience with neurosarc.
Peace to you!

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Thanks for your help..where do they do a biopsy for neuruo-sarc? I have already had a skin biopsy with a diagnosis of sarc. The rheu was thinking it may be just pheripial(Sp?)neuropathy...but I am concerned it may be all connected. Will definately make an appt with a neur dr for a 2nd opinion if no other dr suggests it.
I have brain fog- have been using the wrong words or just can't think of a word(simple words I have known my entire life!) I get embarrassed if I am around people who don't know me. Have a wonderful Easter and again thanks for your help

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thank you for your info...I think I will see a neurologist after I get the test done on Monday. You are all so helpful..I trust your suggestions since I know they come from firsthand experience..and not some textbook a dr has studied in school. Have a great Easter weekend

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Alicei,
Thanks for the info..I didn't know that the emg could be inconclusive as far as neurosarc is concerned. I will be open to whatever the dx is - knowing it might not be the final answer. They did a skin biopsy for the nerves?? I had a skin biopsy where I had the outbreak..it just showed a positive diagnosis for the sarc. An X-ray and then Ct confirmed it in the lung.
This is very confusing and scary to me..and I never know how much I should "blame" on the sarc.
Life is an interesting journey! Thanks for your help..Happy Easter

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Does anyone know the name of the neurologist in Baltimore that is good with sarcoidosis? I don't remember who wrote that they had gone there(was it at John Hopkin Hospital?). I live only an hour from there so that would be a good dr to see for an evaluation. Thanks for your help...I don't write much..but I try to keep upto date with what info you are talking about. You are all so encouraging and honest about your struggles.
It is so good emotionally to have a place to go and talk to real people going through similiar struggles.
I don't feel like I am alone in this battle.

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I'm actually being sent to see a doc at the Temple Lung Center in Philly. I'm also going to inquire about seeing a Gi doc, and neurologist as well.

My current neuroquack thinks my symptoms are "emotional" in nature. I have severe brain fog, short term memory loss, confusion, trembling in hands and arms, cramping in hands, legs, and feet, dizziness, and now developing a numbing/tingling spot in my right upper abdominal area. I used to type 60wpm w/ 97% accuracy. If it weren't for spell check, you'd never be able to read anything I type now! But, that's all "emotional." Yeah, right.

If you're having the same issue, get IE7Pro for Internet Explorer. It's a free add-on program that spell checks any field you type...including this site's.

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Hi blessedmemaw,

When I was diagnosed with neurosarc, I called NIH to see if I could get in to a study group. (I live in northern Virginia). I'd been in a study years earlier for uveitis and it was immensely helpful. Since there is nothing currently happening re neurosarc, they recommended Barney J Stern at the Univ of MD. They told me he is the leading researcher for neurosarc and has been studying the disease for over 20 years. You're lucky to be so close to him, but I warn you, it can take months to get an appt.

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Alicei, Thanks for the info...will look him up after I have the conduction test..My oldest daughter lives in Frederick, Maryland..so she will be helpful in locating him and getting me there. I am blessed. Look forward to talking to you more after the tests. Vickie

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BlessedMemaw,
Did you contact Dr. Barney Stern at University of MD? He is the best! I actually had an appointment with him yesterday. Best doc I have ever seen. Only problem, it takes a long time to get into see him, but its worth it!
Good Luck

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