Hello, Thank you so much for sharing your experience with this debilitating disease. I believe that I'm also suffering from sarcoidosis, because of lesions that have been found in specific areas of my mri. Unfortunately, the doctors that I've see want to disregard these symptoms and I don't know where to turn. I am suffering immensely. Could you please let me know the name of the doctor that you consulted in New York. I would greatly appreciate it. Thank you with all my heart.
Most of these posts are quite old, but perhaps I can help you. I also have Neurosarcoidosis and now live a normal life. I am happy to tell you my story and help you if I can.
Deborah
hi i have jus been diagnosed wit neuro sarc. i wanna ask about a few oof the symptoms...i thought that i was going through menapause because im burning from the inside out...in the dead of winter im sweating...i have pain in both legs they feel like lead...hurt deep inside and burn on the inside...my right arm has a burning sensation going thew it..my ears ring sometimes so loud i cant hear i learned to read lips....i dont cook anymore because i cant taste....nothing taste right....i have real bad headaches...and my memory is slippin and at times i can be in the middle of a conversation and have a brainfreeze....all of this has been the past 5 years...this is very scary and i kinda feel that my neurologist is taken my situation lightly....i guess since she not going through this...anyway my question is...is anybody else with neurosarc experiencing this because when i look up neurosarc symptoms sum of mine is not on there...please help me...i feel like im going crazy and its very depressing...thank you and GOD bless
First of all you are not going crazy. Neuro Sarc had many different symptoms and can be very difficult to diagnose. If you are on facebook, I would recommend you join our group on there. You will find the people on there very sympathetic and very keen to help you whenever they can. I'm sure you will find people on there with similar symptoms to yours. None of my symptoms were the common ones described on the net. Mine came on very quickly and within three weeks I was literally at deaths door, when I had a bells palsy and then the drs new what it was. I had severe back pain and was numb from the neck down to the toes (couldn't feel a thing all over my body, couldn't swallow to eat or drink and heaps of other stuff. My tastebuds changed also and my memory was terrible for a long time. Your dr will be evasive because they cannot help you, they don't know enough about this disease and there is no research because it is too rare. You can recover from this with lots of love and positive thinking. Try every natural healer you can afford until you find the right one and believe yourself well. I believe God will send you the right one if you just ask. (Mine ust wandered into our hardware store when I was in the hospital and started to chat with my husband and she was waiting to help me when I came home) That is how I recovered. Every day I would imagine myself well and imagine the bad cells in my body leaving in the steam from my bath. I would meditate and heal myself. I am well now and live a normal life. I am not a crackpot, just a normal mother and wife. I did not have the time to lay in bed and wait for death to claim me. It took me 6 months before I could even get out of bed, but now I am fine. Please believe yourself well again. God bless you also.
thank you so much for replying....very inspiring and you just dont know how much you eased my mind again thank you....what is the name of the group on facebook?
So glad to have helped even in a small way. Just type NeuroSarcoidosis in the search box and you should find us (that is the name of our page) My name is Deborah, I will talk to you over there again soon.
Have a wonderful day!
So sorry to hear about your brother..... I was diagnosed in 1999 although it went into remission for 11 years blackmold brought it out. Initially found in the lymph nodes of my lungs, it's spread and I now have neurosarcoidosis. No cure BUT God can heal!! I have bilateral hearing loss and wear hearing aides (bilateral meaning more in one ear than the other...FIRST sign of neurosarcoid), Dec 12 I developed uveitis, glaucoma, and cataract. Neurosarcoid means its traveled to the brain and central nervous system. What helps.....Oil of Oregano, lubricated eye drops (expensive but worth it), juicing (detoxifies and clear parasites, viruses, etc), magnesium, and omega 3 with krill oil. Pray!! There is no cure but you can help by boning up on the condition. I wish someone in my family supported me like you are supporting your brother. God bless you and him!
I started having sarcoidosis 50 yrs ago this year. I did a LOT of steroids over those years but for the last 10 I have been doing Marshall Protocol and actually had a pretty decent life. I am thrilled to death with MP. I do believe I have neurosarc that they have not diagnosed because I have a lot of the symptoms that have been described here.
My condition mimicks yours I was diagnosis with it in 2009/2010 and have been battling it ever since the only thing is I filled up with alot of fluid and is unable to walk now.
I am sorry to say it means of lot of testing. I had a lung biopsy (which is a dangerous operation, they enter at the front of your throat and go down from there) anyway they do this to confirm that you have sarcoid in your lungs. Even that is not 100% because under a microscope sarcoid appears exactly the same as tuberculosis.
They usually do a lumbar punction which really just tells them that something in your body is inflammed, from what I can understand, but they seems to like to see the figures. Also lots of bloods. Cat Scans and MRI's. But mine didn't show up on many of the early MRI's, but finally, when I was nearly dead, they could see it. All were done over a period of only 2 weeks. I also had a test where they put needles in you and hooked them up to electricity, it's called different things in different countries and I'm not sure where you are, but it's called a Nerve conduction or something similar. Sorry I know this all sounds very horrible and believe me when I say it is, but it is the sad truth. My advise to you would be to get you head in the right place and visualise the bad stuff leaving your body on a daily basis. You can get through anything if you stay positive. I wish you well, literally
My brother has nerosarcoidosis. I'm at an end with his doctors and don't know what to do from here. If you get this, can we talk? My name is mike. I wish I could find an online support group for this...
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There is a closed group on facebook just type in Neurosarcoidosis and you should see it. However I did find them very negative and not very helpful. I fought this disease with natural healing and a positive outlook. I meditated every day and visualised the disease leaving my body. I know this sounds weird but I now live a normal life. I used a CD which you can purchase on ebay called Secret Healing. It probably sounds stupid to you, but your mind holds an amazing power if you can find it in yourself to tap into it. I chose life instead of death. It's really that simple. If you want it bad enough, you can heal yourself. I was bedridden and had no feeling from the neck down among many other horrible symptoms. I'm sorry to tell you the Drs really have nothing that can help but you can help yourself. I was given 10% chance of survival and was told I would never recover, but I did. You are welcome to contact me here at any time. I am in Australia. I am sending you love and positive healing thoughts.
Deborah