Neuro sarcoidosis

Neuro sarcoidosis is a disease of the central nervous system. That means that your brother has some part of it (the brain, meningitis, nerves and spinal cord) damaged. What is good news is that patients with bilateral hilar adenopathy and erythema nodosum this disease often goes away without treatment of any kind. But, anyway, you should treat it. I guess that his doc will prescribe the most appropriate treatment which will probably be something like prednisone, hydroxychloroquine, methotrexate, azathioprine, cyclophosphamide or even radiation.

I have been diagnosed witrh neuro sarcoidosis. It does not go away.

I have been diagnised with neurosarcoidosis. You should not have given such a flippant reply to this question. neurosarcoidosis is an extreme disease. It taKES LIVES AND reduces the quality of life for anyone who has the misfortune of getting it. Neurosarcoidosis can affect the brain, eyesight, spinal cord, and mobility. Sometimes the treatment is worse than the cure. With neurosarcoidosis there is no cure and no real relief.

See a doctor as soon as possible if you think you or a loved one has this disease.

I have been diagnosed with neurosarcoidosis and have been living with the disease for 5 years. Symptoms persist and the disease does not go away but is manageable with prednisolone and life does get better. Please don't let yourself go untreated - and remember that you are not alone.

I was diagnosed with neurosarcoidosis in 2003, I was doing pretty good, though I still have a lot of paralisis, and bad muscle pains. I just found out that the disease is spreading to my chest, I was thinking that I had heart trouble. It is so devastating. The worst thing about this type of sarcoid is really untreatable. I just pray that this dont get me down.

I have been living with this condition since I was diagnosed in mid 2003. Without treatment this disease gets progressively worse. I sought medical attention over a six month period before my neurosurgeon finally put me into the hospital for more test. Even then it took an addition week in the hospital, undergoing every kind of test you can imagine before a biopsy confirmed sarcoid.
Unfortunately, by the time my diagnosis was made and treatment perscribed, I had already suffered permanent nerve damage to my auditory nerves resulting in total hearing lose in my right ear and partial lose in my left. If left untreated I would be completely deaf at this time.
There is no cure for nuerosarcoidosis. But the condition is manageable. My prognosis is that I will probable be battling this desease for the rest of my life. Left untreated, I wouldn't have much of a life left to battle for.

[ My daughter has been struggling with sarcoid going on a year and half now. We have seen specialists in Boston and in New Hampshire. Her latest episode was a seizure and partial paralasis to her arm and leg . She has been on every drug useable, the next is cytoxan. Not a good drug. She is going for an MRI of the brain and spine next week. After reading all of this I strongly believe she has neurosarcoidosis. Please give some hope to me for her!!!

I was diagnosed with sarcoidosis in 1987. It was in my eyes and lungs. I had 4 detached retinas and had surgeries to correct those. I had a biopsy of my lung with a bronchoscopy to verify it was sarcoidosis. I've had to lymph nodes cut out of my throat. It is in my spleen, skin, lungs and just recently Dec. 2009 discovered in my brain after I began losing some memory. I have fought this disease for 23 years with prednisone, methotrexate and Plaquanil. The plaquanil caused my perifferal vision to go away along with causing colorblindness. I had to stop taking it in fall of 2008. I told the doctors that the sarcoid would flare up again. They couldn't keep me on the meds.. Sure enough, it came back with a vengeance. Straight to my brain. I have MRI's done every 3 months now to see how much it spreads. They put my back on prednisone and I am waiting for this weeks MRI to see what's next. Never give up on hope and new meds.. I have bequeathed my body to science in hopes of helping others. Just designate it to be used for research on sarcoidosis. There isn't too much research going on since it is a rare disease. Good luck to all of you fellow sarcoidians. Keep on fighting. Stay the warrior you are and fight this disease.

I was diagnosed with Neurosarcoidosis about 6 or 7 years ago. The original symptoms that tipped me off to something being wrong were recurring headaches in an isolated part of my head (the back left area) and at first I did not think too much off it. However, when the headaches persisted and I began experiencing dizziness and vertigo, I went in for a brain MRI. Immediately, the doctors saw that something was wrong - specifically an inflammation in my cerebellum. However, a diagnosis of Neurosarcoid was not made for almost a year. Before the diagnosis I was given various medicines, but the condition got worse. The headaches continued and I began having daily nausea and vomiting. Also, I began developing double vision and my balance was terrible. It seriously affected my quality of life.

A doctor at Columbia University Hospital in New York eventually made a diagnosis of Neurosarcoid by doing a liver biopsy.

Once the diagnosis was made, I was put on prednisone and I have to say, it works remarkably well. I started on a relatively high dose (60 mg / day) and while I almost immediately felt better in terms of headaches and balance, the prednisone caused many problems by itself. I gained a lot of weight, began bruising easier, but it did elevate my mood, because I could go through the day without throwing up. I have been on varying doses of prednisone for several years and am still taking it. Since prednisone is not good for your body in high doses my doctor has tried several times to slowly take me off it. However, anytime I got down to a relatively small dose of 15 mg / day, that is when my symptoms would come back. I would begin getting headaches again and several times I my vision was disrupted and I found that I could not speak or read or write correctly. That was very scary and the doctor explained that it was probably a mild seizure. So, currently, I am taking 30 mg once a day alternating with .5 mg every other day. So 30.5 mg / every two days basically.

I am pretty much symptom free now, but the MRIs still show inflammation in my cerebellum. It may never go away and I will have to take some kind of medicine to keep it under control for the rest of my life. I am also taking Cellcept, which is less damaging to the body that Prednisone. The idea is that it will eventually replace the Prednisone, but as I mentioned earlier, when the dose of prednisone decreases below a certain point, I get sick again.

I guess that my point is that even though I have neurosarcoidosis, it does not affect my life day to day. I just have to get follow up MRIs and remember to take my medicine. I have heard from my doctor that sometimes, it just goes away or "burns out" on its own. Well, that has not happened to me yet, but I guess it always could. Anyway, to anyone reading this that has been or knows someone who has been diagnosed with this disease, know that it can be brought under control and you can live a normal life.

In retrospect, I believe I may have been fighting an autoimmune disease since my college days (about 18 years ago) and that it has evolved itself into sarcoidosis (uveitis in the retina) which was diagnosed in 97-98. A year and a half ago, I started experiencing symptoms such as double vision with light sensitivity, heaviness in my legs, inability to walk or run, numbness and tingling in feet, legs and hands, freezing cold feet and hands and difficulty standing for too long. Not to mention extreme fatigue just trying to go about my normal day. In July, I finally decided I'd had enough of not knowing what was happening to me and was hosptitalized in order to have a barage of tests performed under a neurologist's care (spinal tap, an incredible amount of bloodwork, bronchoscopy and biopsy of the lungs, numerous eye tests, electrical shock tests, cardiogram, two MRIs with contrast, CTscan, etc.) and was diagnosed with neurosarcoidosis. I had five days of intravenous cortisone and am able to walk a little bit better and have more stamina in terms of being able to stand on my legs for longer. I still do not walk very well and can't imagine what would happen to me if I had to run for my life %-)
If anyone is wondering why it took me a year and a half to get checked out it's because two years ago I moved to Sicily, Italy and have been struggling with my decision on selecting a doctor here. (Before the hospital stay I was under the "care" of another neurologist who didn't seem to know what he was doing, hence my preoccupation and indecision.) I firmly believe that it was the stress of having moved here from the US and the subsequent unhappiness in having made such a move that triggered the neurosarcoid.
I am a firm believer in alternative medicine and a healthy diet as a means to obtaining wellness. Which is one of the reasons I am reluctant to a lifetime of steroids, knowing full well the dangers and harm they cause.
Has anyone had any success in pursuing a homeopath for their neurosarcoidosis? Would appreciate anyone's input on this...thanks for taking the time to read my story :-)

Yes, I have and Holistic Doctor that I'm currently working with at the present moment. He is a very good doctor, when I arrive in his office he totally put me at ease. He explained all of the natural vitamins supplement I had to take: about 30 capsules. I know that it is a lot, however it was well worth it I felt great like I was living on top of the world. Hence, once you are done with the vitamins, you have to continue them like habit. You can't expect to use the vitamin one time only and that it, this is incorporated in your daily regime forever. And he also advise to me to changed the way I eat. More Green Leaf Vegetables (RAW) and Fish, no Carbs. And exercise daily ; walking, running and going to the gym. I have the same symptoms you had and trust me it wasn't a happy day. The numbness from the left side of my body would happen almost everyday, especially when I was working on my job. I had to sit in my chair until the numbness past, than I went back to work. I was fatigue always, I could be sitting in my chair reading and the next thing you know I'm sleeping. When I wait up it a half hour later. However Sarcoidosis can go away part Mental and Physical; Mental mean let the crazy man goes away don't claim him and the Physical part is all up to you what way you want to go. Right way or the wrong way. Been Diagnosed since 2006

Hi Claudia I picked up on this post when looking at more info on this distressing condition. I am a very experienced homeopath of 25 years experience and have treated only two cases in this time - both where it was affecting the lungs mainly. Both cases did very well and in one of these he became free of his symptoms. Unfortunately I do not know the longterm outcome as he did not come back after his successful treatment.
Of course this is anecdotal but I have seen many chronic conditions helped by Classical Homeoapthy.
my website is www.homoeopathyuk.org if you want to get in touch

you are a complete jerkoff

you are a complete jerkoff