neurosarcoid of the brain

I too have neurosarcoid I was diagnosed in Oct of 2005 after a brain bx, after almost three yrs of symptoms I finally was referred to a neurosurgeon at the cleveland clinic he had reviewed my MRI's and 1 week later I was scheduled for surgery. Very nervous and confused for years with symptoms of dizziness and weakness, memory issues, slurred speech, tingling in extremities I finally found out what was going on with me. For a long time my OLD neurologist ( no longer seeing!!!) keep telling me it was my migraines and stress, that was giving me all these symptoms. I still have so many questions re: this condition but I think I am on the right track. I am currently being treated at the Cleveland Clinic by a Dr. who specialty is Neruosarcoid. The medications that I am on for the Sarcoid are Methotrexate, Prednisone, and every four weeks I go in for an infusion of Remicade. This seems to be helping, my last MRI still showed the lesions and enhancements but they have shrunk somewhat. They want to do 5 more infusions and then check another MRI I am keeping my fingers crossed. I wish all of you out there suffering from this horrible monster that has taken over our bodies and spirits All of my prayers and thoughts. I really don't know what I would do without all of your stories. I know that I am not alone in this fight.

All of my prayers to you,

Nancy

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Nancy,

I have neuosardoidosis. I was diagnosed about two years ago with pulmonary sarcoidosis. It is now in my lungs, spleen, brain, and cervical spine. I was on Prednisone and had to stop this due to severe side effects. I have been on Imuran and Methotrexate with no help. I was on three months of chemotherapy infusions with Cytoxen and no improvement. I am now on CellCept and Plaquenil. I don't know if this is helping or not. Your not alone Nancy. I hope your treatment works for you. Everyone seems to be a little different. I have over 20 lesions on my brain but they don't seem to be too concerned about it. I was having neck and back pain so bad and my doctor said I probably slept on it wrong or something. I told him this has been for months so I got another doctor to do an MRI and there were several lesions there also. I just wish they would listen.

Lori

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Dear Nancy,

Just a quick hug!
You are not alone in this fight! My story is nearly the same. I have neurosarcoidosis for more than 5 years now. In a couple of weeks I start with Remicade infusions too. Believe in yourself, you are on the right track. I'm scared for the infusion but it's my only way to a little bit relieve.
Sarcoidosis could be so complicated, especially neurosarcoidosis! Not many doctors are specialist in neurosarcoidosis so I'm glad you find one.

Loves, Sarcoidosispatient

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I have neurosarcoid also. Been battling with this since 2005! I am currently taking 80 mg of prednisone along with CellCept. I will be on 80 mg for another week and then 60 mg for 2 weeks and tapered off at 40 mg. Is there anyone out there taking CellCept that can tell me if it seems to be helping them? I am currently being treated by Dr. Chen at John Hopkins and I hope he is putting me on the right track! He has not suggested any infusions, but I will have another MRI done in July to see if this regiment is working to relieve the inflammation on my brain. I am glad that I am not alone in this fight and I am so thankful to this website. Reading the different discussions and blogs have really been a help to me in staying positive and hopeful.

You all be blessed and take care!!

Canrod17

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My father has neurosarcoidosis. He was diagnosed in February of 08. He had already been in a hospital bed for 17 months prior. It all started with him falling off of a ladder - he blacked out for no apparant reason - a fell 6 feet. He hurt his back and was illegible for surgery - however it took a year to see the specialist for an appointment. During that year ( 2006) he got sicker and his body weak to the point that the surgeon does not think he could recover from an operation. He had tremendous back pain. He also had a stent in his urinary tract. It was changed every 6 months and always a source a great pain and persistant infection. His body kept getting weaker. Next week will be two years that he has been in a hospital bed.

In February of 08 when he was diagnosed with neurosarcoidosis. He was placed a Prednizone. That worked for about a month - he seemed to recover very quickly. Was actually able to go through rehab and get himself around in his on wheelchair. The weekend prior to his release fromt he hospital - he got an infection - and all of the gains turned around. The infections became more persistant. He began retaining water, there was a scare with his heart - a scare with a bowel obstruction, ended up back at the hospital, got a bed sore while he was there ..... placed in paliative care status for the third time now - that is where he is at. He now gets 4mg dilaudid every 2 hrs and Adivan to relax his muscles 1 mg every 6 hours. He is off of the predizone for 3 months now. He seems dilusional - talking to my mom and not recognizing her. He gets himself all worked up because he thinks he on the job working - this really tenses up his body - makes it hard for him relax and rest. He is now at home in paliative care. That was 6 weeks ago.

There is no sarc specialist in Ontario. Doctors don't seem to know what to do. Family doctors has given up .....

This has become very difficult for my mom who is there with him every day.

Frustrated ........... where can I find help ......

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amico, this is a listing of doctors....... there is one listed for canada, but since i'm not sure where about in Canada you are, maybe you can call him and he could suggest more for you! my prayers and thoughts are with you.
i too have neurosarcoid and unfortunately have to take one day at a time. i wish you well! eileen

http://www.sarcoidosisonlinesites.com/dr%20database.htm#mn

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Thanks guys for the suggestions. I have thought about going somewhere else for a diagnosis.

I have tried to contact the only Canadian specialist listed - in Quebec - however, he has been on vacation and have not heard back.

Will keep you posted on my search.

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What Dr did you see at Cleveland Clinic?
Did you see any others? Was he part of the Sarcoidosis Center of Excellence?

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Nancy,
I also have neurosarc but was diagnosed quickly. It was about 2 months from onset of major symptoms to diagnosis. The course of finding good doctors and health care has not been so smooth. Unlike you my MRI's have all been clear they diagnosed neurosarc from a biopsy of my parodid (sp?) gland (lymph node) below my ear. My symptoms were similar to your including dizziness (vertigo) that was very severe, confusion, numbness in my face, torso, legs and arms, nerve pain on my back, headaches, visual changes, etc.... My big concern now is that they won't find anything in my brain until it is to late. Were the lesions on your brain easy to see on MRI?? I don't want to pay for an annual MRI if it never finds anything? My neurosarc is being treated with prednizone and plaquel but I can seem to get off the medication (2 years now) without major symptoms reoccurring.
Good luck with your treatment!!
Leah

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When I had my MRI's the lesions were very visual. I see Dr. daniel culver and dr. husni at the cleveland clinic. I was on infusions of remicade with predisone and a ton of other meds. But by being on the remicade for over a year I am completely free of tumors and lesions. I would recommed this treatment to anyone as long as the insurance covers it. I guess it is hard to get insurances to cover for some reason. Make sure that you become an advocate for your health. You know your body better than any one else, so if you don't feel right let your dr's know. best of wishes to you and your health. take care

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I read last year where u replied to another that u had neurosarc, just wondering if u had ever tried methotrexate? I have had cytoxan tx's every mo ( 6 the 1st round, 2 the 2nd round) Also, still on cellcept & prednisone. Everytime I get down to 15mg of prednisone then I start back with the fevers, etc. so this time they want to keep me on prednisone, cellcept, plaquenil (arthritis) & try methotrexate to see if they can get me off prednisone completely by using metho. Thanks 4 ur advice. Jenny

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Hello Sarcoidosis Community,

I am a therapist in private practice, in Michigan and as a sarcoidosis patient for 20+ years, I specialize in chronic illness support, mainly sarcoidosis. I would welcome the opportunity to offer support in coping with the complexities of this disease. Feel free to contact me directly at either 248 794 3162 or by by email at jtherapeutic@yahoo.com.
Together, we can make a difference!

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jenny3, Yes i to was on methotrexate for about a year as well as cytoxan infusions, but it was not doing anything for me. that is when the dr that i am seeing suggested remicade. And it has been almost three years now, I still have bad days, but for the most part I feel much better. Right now I am on 5 mg of prednisone, i also started omega 3, flax seed, 500 mg of vitamin c, vitamin 12, zoloft and , nadolol. I started the omega 3 and flaxseed for their immune properties. I have heard that they help with inflammation. Take care......Nancy 11

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My father passed away early Saturday morning. After 2 years and 1 month his journey has come to an end.

He contracted another infection for which the doctors were unable to provide the correct mixture of antibiotics. In the last days he was on 12mg of dilaudide every 2 hrs. He still had unbearable pain.

No one should have to endure the pain and incredible suffering that he has gone through. More needs to be done to understand this disease.

I has hoped that tis site would become a resource for those with the disease - clearly some are using it that way. What do you guys think would improve this site? I would like to see a better structure. There is so much conflicting information.

I wish you all well.

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just wanted 2 tell u that i am the same having neurosarc & the brain lesions but my dr the 1st wk we found out about it put me on high dosages of iv steroids in hospital then the next 7mo or so with a chemo drug called cytoxan. 2 yrs later my lesions r almost gone every 6 mo they just keep shrinking more. tried methotrexate but it did nothing 4 me. just wanted u 2 know about cytoxan & that it has really worked 4 me if these others dont do the trick. although i take cytoxan @ times i.m always on prednisone 2 usually 10 mg. good luck 2 u.

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I have neurosarcoidosis, small nerve fiber neuropathy, autonomic dyfunction, & neuroendocrine sarc, endometriosis, new one is PCOS!!!, just found that one during an ultrasound for lack of a period (8mo) , oh, and 2nd addrenal insufficency (cortisol level of 1), thyroid problems, too...lots of hormones not working....it doesn't seem to end...brain fog (can't find my words- can't sleep, too) I need a doctor that can handle all of this...not just giving me more DX's! It's very depressing. I gained lots of weight too. My last Remicaid infusion, 4th one, which was working by the way, isn't as well, but could be a flare?!, the nurse accidentally gave me 80 mg of solumedrol. IT made me crazy- just full of anxiety. I can't handle prednisone, funny because i need it for my addrenals. My pituitary/hypothalmus dysfunction,prevents me from sleeping, and functioning normally.... very fatigued. I take too many pills to sleep and for my a pain. Remicaid scares me too, but it works. I think. Still on pain meds. I exercise daily and sit in the sauna doing yoga... still gained 30#! nothing makes since anymore....I've tried everyting to feel better, its 5 yrs later and i feel worse. any doctor out there that can handle what is happening? IT's like a snowball....(as i look outside) Thanks!

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Hello Madison. I saw your letter in the list of problems under eosboriken's message, regarding her husband. I am very sorry that you have had to go through the whole business regarding sarcoid in the brain. I know what you have and are going through,because I also have it in my brain and around my brainstem. I had six months of chemo (cyclophosphamide and methylprednisolone) and since then have been on oral chemo of the methylpred. and methotrexate. Two MRI's ago, the inflammaton had decreased somewhat, which was good news. I am due for anothe MRI and will be seeing my two specialists, neurologis and immunologist, soon after. So hang in there, and send a wee prayer up for me too. I need all I can get!
kind regards, Ruth

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Hello Madison. Sorry, but I was actually writing to Nancy6. I am always getting things wrong. But I have just read your letter, and I am very very sorry for what you have been, and are still going through. I wish you could come to New Zealand and see my doctor. I had him in 1994, when I was diagnosed with spinal cord sarcoidosis. In those days it was very difficult to diagnose, but my man felt all along that it was what I had, and he treated me with everything in his power. I was in and out of hospital every five minutes, and on drips, scans, drugs, MRI's (7) lumbar punctures (9), just everything. I first went to see him in February with wobbly knees, and in July I was in a wheelchair, paralysed from T-4. However I did have sixteen years of stability, but last year it all came crashing down again. An MRI showed inflammation in and around my brain, and my spinal cord was (is) swollen from C-7 to my sacral spine.! We are worried about that one, because if my spine becomes compressed again, further up, I will be quadraplegic.
However, so far so good. I try to keep feeling up and positive, but it is not easy sometimes, when I think what is going on inside me! Still, faith in the Lord, and in my wonderful doctor - same one again after 16 years, and neither of us looks a day older, ha ha l.o.l.
God bless, Ruth

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Hello Nancy. I am so sorry, but I wrote to you just now, and then found I had sent it to Madison!! So I just wrote to her to explain, and then finished up writing a letter to her too. My letter to her is actually supposed to be to you, so I hope you find it down there somewhere. God bless. Ruth

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Hello Amico. I have just read your message, telling us about all your beloved father's sufferings, and now he has passed away. What a terrible time you all have had, to watch someone you love suffering so much and for so long. Amico, I am very very sorry, and wish you and your family God's blessings. With love, Ruth x

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My Daughter turned 21 on March 31. Shortly after her high school graduation in August 2007, she took ill and we wll thought it was merely the flu. She is like a breath of eternal spring, full of expressive love, completely positive and works very hard; she is an A student.
The flu, or so we thought it was, prolonged and went on and on into 3 weeks. At this point, her Mom, a medical doctor, got concerned and had some test done, she was then hospitalized, for what at the time was thought to be lyme disease. This was merely the beginning of one after the other incorrect diagnosis.
Finally, several months later, an MRI showed she had lesions on her brain and was diagnosed with neurosarcoidosis.
Her, body responded quite readily to the IV-prednisone and in a few qweeks she was back home and improving more and more every day back to normal.
Less then 4 four months after coming home, he started to have sever hiccups that wont go away. Thanks to my wife, she immediately related it to her what at the time we considerd he prior illness and back to the hospital we went. MRI showed new lesions. Get got well again, same treatment and at home followed a regiment of oral prednisone.
She was doing so well that she was able to accept her offer at the University of Buckingham, England and so off she went in January 2008.
In April 2008, the atack of lesions on her brain returned with a vengence. A vengence because they occurred in the are of her brain that affect her sanity and memory.
At the time we was admitted to the hospital in England, she was still highly cognizant to adequately give a very detailed account of her illness to date. Unfotunately, the Doctors, were complacent, refused to accept that her knowledge of her medical history was correct and refused immediate treatment.
Therefore, the time it took for her mom to get there and for her to be flown back to UPMC in the Pittsburgh, had resulted in significant damage. She was literally in a retarded state.
Again, her body responded in the most remarkable manner to the treatment of IV-prednisone, however, the sanity issue, posed a problem. She became unmanageable physically and during one bout was admitted to Western Psyche Institute (a big mistake). Imediately they treated her with high doasges of hardol, to which she had an allergic reaction and went into respiratory attack. She was removed and brough back to medical ward.
She recovered and by the Fall of 2009 started university close to home. End of her first semester she made the Dean's Honor Roll. In the midst of this spring semester, she got into an auto acident, she fell asleep at the wheel. For the psychosis, she had been on Seroquel since relase from the hospital.
She thought the seroquel was putting her to sleep and just the week before, her last MRI shoed no lesions and her Doctor told her she was Neuro-sarcoidiod free. A gross minunderstanding of this illness.
After the accident, she got worse, they find small lesions in the area affecting her mental state and today she is very much in a psychotic state getting worse every day inspite of the treatment of prenisone and for the mental state the seroquel.
We are hoping that we can find a doctor or a combination of doctors capableof treating the neuro-sarcoidosisi and the psychiattic illness.
So if anyone out there knows of a good neuro-psychiastrist whose focus is neuro-sarcoidosis please shout it out. I want my daughter back, she is all i got.
Please pray for us,

A desparate
Dad.

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