Re: Advice, shyrose from jessica

[Guest guest]

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

Hello ,Unfortunately I am one of those people with neuro that (although they did dx me as having it because of all of my symptoms and disabilities) nothing shows up in the spinal fluid, MRI and I absolutely hate spinal taps!! the scarcoids were buried somewhere deep in my brain and left scars that it has affected everything. I used to sing, it has taken away my voice, some days I just whisper, I don't walk anymore I use a scooter, chronic pain 24/7, neuropatic pain, trigeminal neuralgia, arthritis from being on preds for so long. I am not complaining I have been like this now for about 10 years and have come to terms with the situation and was just wondering if there were any new tests out there I should be asking my Dr to

try because I am tested every 3 months to make sure I still in remission but sometime I not so sure I AM in remission!Thanks for your advice "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Advice, shyrose from jessica

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

Hello ,Unfortunately I am one of those people with neuro that (although they did dx me as having it because of all of my symptoms and disabilities) nothing shows up in the spinal fluid, MRI and I absolutely hate spinal taps!! the scarcoids were buried somewhere deep in my brain and left scars that it has affected everything. I used to sing, it has taken away my voice, some days I just whisper, I don't walk anymore I use a scooter, chronic pain 24/7, neuropatic pain, trigeminal neuralgia, arthritis from being on preds for so long. I am not complaining I have been like this now for about 10 years and have come to terms with the situation and was just wondering if there were any new tests out there I should be asking my Dr to

try because I am tested every 3 months to make sure I still in remission but sometime I not so sure I AM in remission!Thanks for your advice "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Advice, shyrose from jessica

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

Shyrose,

Neuropsych testing can determine what parts of the brain are being effected, and for those of us where nothing shows on MRI's etc-- many times this can cinch the deal on NS dx.

Much of what we think is arthritis is SARCOID-INDUCED arthritis and many of the steroid sparing meds can help.

Methotrexate and Plaquenil are good ones for the arthritis, Imuran, Arava, or other DMARDS (Disease Modifying AntiRheumatic Drugs) help to bring that systemic inflamation down. WWW.ARTHRITIS.ORG has a great annual drug issue (go to 2007 or before) and it has the whole thing in the Jan/Feb issues. It really explains best what classification the drugs are in-- how they work, and what the side effects are. The newer BRM's (Biological Response Modifiers) are also good for many of us in bringing down that inside the bone pain.

Hope this helps,

Sincerely,

Tracie

NS Co-owner/moderator

Re: Advice, shyrose from jessica

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

Shyrose,

Neuropsych testing can determine what parts of the brain are being effected, and for those of us where nothing shows on MRI's etc-- many times this can cinch the deal on NS dx.

Much of what we think is arthritis is SARCOID-INDUCED arthritis and many of the steroid sparing meds can help.

Methotrexate and Plaquenil are good ones for the arthritis, Imuran, Arava, or other DMARDS (Disease Modifying AntiRheumatic Drugs) help to bring that systemic inflamation down. WWW.ARTHRITIS.ORG has a great annual drug issue (go to 2007 or before) and it has the whole thing in the Jan/Feb issues. It really explains best what classification the drugs are in-- how they work, and what the side effects are. The newer BRM's (Biological Response Modifiers) are also good for many of us in bringing down that inside the bone pain.

Hope this helps,

Sincerely,

Tracie

NS Co-owner/moderator

Re: Advice, shyrose from jessica

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

Hi Tracie,I have had neuro psycs every few years, that last one was last year. they know that my parts of my frontal lobes are affected memory word finding stuff like that also the cranial nerves. I don't cook anymore because I don't remember to turn off the stove so I use meals on wheels and the microwave and things that turn themselves off. I also have a homemaker and a terrific computer program that helps keeps me up to date with my appointments and my meds and stuff like that. As for meds the only one that keep the headaches at bay is is topamax. I have gone through just about everything else and when I thought I was coming to the end of my rope my dr gave me topamax and it helps.. My only fear is now I have this fear that I am may be out of remission and I need another

test other than the ACE. Thanks so much for all of your input and patience.Shyrose "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Advice, shyrose from jessica

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

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[Guest guest]

Hi Tracie,I have had neuro psycs every few years, that last one was last year. they know that my parts of my frontal lobes are affected memory word finding stuff like that also the cranial nerves. I don't cook anymore because I don't remember to turn off the stove so I use meals on wheels and the microwave and things that turn themselves off. I also have a homemaker and a terrific computer program that helps keeps me up to date with my appointments and my meds and stuff like that. As for meds the only one that keep the headaches at bay is is topamax. I have gone through just about everything else and when I thought I was coming to the end of my rope my dr gave me topamax and it helps.. My only fear is now I have this fear that I am may be out of remission and I need another

test other than the ACE. Thanks so much for all of your input and patience.Shyrose "You cannot do a kindness too soon. because you never know how soon it will be too late." Re: Advice, shyrose from jessica

my advice is a spinal tap. that's what clinched my dx. he did three of them and each one got worse, because along the way most tests were normal, except my calcium, and ,my Mri and angi-gram and liver function test, and i had a small tumor in my left adrenal gland.

i hope that helps Rose,

many hugs and blessings and a pain free day

IN pa

Planning your summer road trip? Check out AOL Travel Guides.

Looking for the perfect gift? Give the gift of Flickr!

Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail