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sarcoidosis 13 years 1 month ago #566

  • suzan
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hi. i have neurosarcoidosis, currently in remission.

i have yet to have contact with ant other person in uk, who has this disease, though my neurologist tells me more sufferers are being found every week.

it affects me very much like ms .

mobility, eyesight, coordination, and many things assossiated with longterm highdose steroid trtmewnt,cataracts, osteoporosis, etc.

i have been very lucky, iam still here.

karl u have got the potential for a great site here.
cmon peeps. lets start posting.

suzan<br><br>Post edited by: Able_Here_Team, at: 2008/05/23 19:32

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Re:neurosarcoidosis 13 years 3 weeks ago #625

What is Neurosarcoidosis?
Neurosarcoidosis is a serious and devastating manifestation of sarcoidosis in the nervous system. Sarcoidosis is a chronic inflammatory disorder that typically occurs in adults between 20 and 40 years of age and primarily affects the lungs, but can also impact almost every other organ and system in the body. Neurosarcoidosis is characterized by inflammation and abnormal cell deposits in any part of the nervous system – the brain, spinal cord, or peripheral nerves. It most commonly occurs in the cranial and facial nerves, the hypothalamus (a specific area of the brain), and the pituitary gland. It is estimated to develop in 5 to 15 percent of those individuals who have sarcoidosis. Weakness of the facial muscles on one side of the face (Bell’s palsy) is a common symptom of neurosarcoidosis. The optic and auditory nerves can also become involved, causing vision and hearing impairments. It can cause headache, seizures, memory loss, hallucinations, irritability, agitation, and changes in mood and behavior. Neurosarcoidosis can appear in an acute, explosive fashion or start as a slow chronic illness. Because neurosarcoidosis manifests in many different ways, a diagnosis may be difficult and delayed.

www.ninds.nih.gov/disorders/neurosarcoid...neurosarcoidosis.htm

Post edited by: DAEMONICUSMEDICUS, at: 2007/10/07 02:56

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Re:neurosarcoidosis 13 years 3 weeks ago #626

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yeah, thanks for that, im not skilled enough yet at using computer to post stuff like that, so its great that you have done so.

sarcoidosis can affect any organ of the body, normally found inthe lungs (where it can minmick TB), skin, eyes,. it can attack the joints (where it mimicks rhumatoid artheritis), but it can be found in any organ.

I have it in my brain, and it has dominated and completely changed my life over the last 20yrs,

i just wanted to share that with you.

suzan

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Re:neurosarcoidosis 13 years 3 weeks ago #629

Thanks for sharing, Suzan. I for one, do appreciate that very much.
Actually I am not very skillful with computer myself. But using the \"copy and paste\" method is very popular and extremely easy to do. Here is the instructions:

COPY AND PASTE USING THE MOUSE
Put the mouse at the beginning of what you want to copy and click the left mouse button, holding it down while you drag over the section.

Drag across or down. At the end of what you want copied, let go of the mouse button.


What you want to copy should be highlighted!

(If you goof, click the mouse button once to unhighlight, then start over.)
While it's highlighted, hold down the Ctrl key and hit the letter \"c\". This copies the highlighted part to an invisible clipboard.

Now go to where you want to paste it. Put the cursor on that spot by clicking the left mouse button once. Now hold down the Ctrl key and hit the letter \"v\" to paste what you copied.

If you want to move text from one place to another, highlight the text then hold down the Ctrl key and hit the letter \"x\". Click on the place you want to move it to, hold down the Ctrl key and hit the letter \"v\" to paste it in the new place.
(This cuts it from the original place, copies it to the invisible clipboard and then pastes it in the new place.)


Ctrl + c = copy
Ctrl + v = paste
Ctrl + x = move



HIGHLIGHTING USING THE KEYBOARD
Another quick tip to make life easier is learning how to use the keyboard to highlight things.

Put the cursor at the beginning of what you want to copy by clicking there once with the left mouse button.
Now hold down the Shift key and use either the arrow keys, the Home key or the End key to highlight.

The arrow keys are self-explanatory. (Try it!)

Holding down the Shift key and then hitting the Home key will highlight from the cursor to the beginning of a line.
Holding down the Shift key and then hitting the End key will highlight from the cursor to the end of a line.[/b]
members.aol.com/jaynecg/private/copy.html

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Re:neurosarcoidosis 13 years 1 week ago #817

No idea if this is any good, but thought I might add the website/link on: Neurosarcoidosis.

Neurosarcoidosis refers to sarcoidosis involving the central nervous system. Approximately 5-10% of people with sarcoidosis develop central nervous system involvement. Only 1% of people with sarcoidosis will have neurosarcoidosis alone.

Signs and symptoms:

Neurosarcoidosis can present with any neurologic finding. Signs and symptoms are dependent on the area of the brain involved. The base of the brain is most commonly affected. Possible presentations include persistent headache, nerve palsy, weakness, dysphagia, seizure, psychiatric problems, etc. If the hypothalamus is involved, a person may develop endocrine abnormalities such as hypothyroidism, central diabetes insipidus, irregular periods or adrenal insufficiency.

en.wikipedia.org/wiki/Neurosarcoidosis & www.emedicine.com/NEURO/topic649.htm

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sarcoidosis 12 years 7 months ago #2260

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when i first started writing re neurosarcoid i said that i hadnt met anyone with neurosarcoid, byy this i meant to chat to. Well, another sufferer has joined and we have linked up. Im really happy to have this friendship :)

when neurosarcoid is active, it can be very very frightening, and the drugs they giveto control it,(normally very high dose steroids and/or a combination of steroid sparing drugs), come with their own demonic properties, often needing more and moree medication, trial and error, to stabilize the sarcoid activity.

it is easy to feel very alone with this illness (like with many other diseases). every sufferer experiences symptoms unique to themsselves, and it is a tough ride.
This isnt made any easier by the lack of general knowledge that is there within the immediately accessible, health service/support provision.- a gp/dentist/social services/O.T etc, all of whome are unlikely to have ever come across neurosarcoid before.

(i remember an OT telling me my loss would be worse and permanent, and that i would never get better, well at that stage in the the course of its activity, neurosarcoid had given me epilepsy,made me blind, put me in a wheelchair, lost any coordination of my arms/hands...thats not to even touch on the psychological and social effects that the disease was having on my life!.....well this OT was wrong!!...sure ive got massive scar(granulomas) tissue scattered across my brain and spinal column, ive got loads of physical problems from this, but im kinda walking ,talking, seeing, all with probs,but im doing them :) ).

One things for sure, i had to find my sense of humour, and respect the limitations of this illness , and when it says time to rest, it means it, no matter how much i may wish to do otherwise...:)

xx suzan xx<br><br>Post edited by: Able_Here_Team, at: 2008/05/23 19:35

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Re:neurosarcoidosis 12 years 6 months ago #2276

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:) this site offers an overview of sarcoid(not specific to neurosarcoid), and it has some useful links near the end of it, which ive put here...:)


www.sarcoidosissharma.com/commonlyaskedquestions.html


Sarcoidosis Links & Websites

These websites include many links to other invaluable resources:


WASOG: World Association of Sarcoidosis and Other Granulomatous Disorders Resource for scientific journal Sarcoidosis Vasculitis and Diffuse Lung Diseases
Link: www.pinali.unipd.it/sarcoid/

Foundation For Sarcoidosis Research:
Andrea Wilson
P.O. Box 577-849
Chicago, IL 60657
and: 122 South Michigan Avenue, Suite 1700
Chicago, IL 60603
Link: www.stopsarcoidosis.org

Sarcoidosis Center:
Link: www.sarcoidcenter.com/

Sarcoidosis Research Institute:
Link: www.sarcoidosisresearch.org

Sarcoid Connection: The Reference Library
Link: www.sarcoidconnection.com/

SarcoidosisOnlineSites.com:
Link: www.sarcoidosisonlinesites.com/

National Sarcoidosis Resource Center:
Link: www.nsrc-global.net/

Sarcoid Buddies Group-Chat Site
groups.msn.com/SarcoidBuddies

Dr. Sharma&#8217;s Websites:
Link: www.sarcoidosissharma.com
and
Link: www-hsc.usc.edu/~osharma/#profile

Erythema Nodosum Support Group
health.groups.yahoo.com/group/erythema_nodosum_Group/

...suzan xx...............................:)

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Re:neurosarcoidosis 12 years 6 months ago #2278

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:) below is a link to a site which amalgamates all the recent medical profession et al. web activity......this site is extremely useful, so try it using their search engine, for more info. regarding your specific medical condition.

:) :) sarcoidosis


www.medworm.com/rss/search.php?qu=sarcoi...=Any&o=d&f=c

:) :) neurosarcoidosis

www.medworm.com/rss/search.php?qu=neuros...tions=on&info=on


:) xx suzan xx

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Re:neurosarcoidosis 12 years 5 months ago #2768

Hi Suzan, I finally made it to this site. I thank you for all the info u posted. I am currently awaiting insurance approval for enbrel. I am refractory to prednisone and many of the other meds traditionally used to treat sarcoidosis. Enbrel is in a drug class called biologic's. It is a protien that inhibits the body's immune system from making TNF, tummor necrosis factor, the typical use for this medicine is for RA and other inflamatory diseases. Some studies suggest that it may help with sarcoidosis. We will see. I am eating oily fish and taking omega 3 supps. Just started so not a noticed difference. My pain med is 10 mgs of hydrocodone x6 a day. Numbs me up but doesn't take the pain away. Thanks for listening.

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Re:neurosarcoidosis 12 years 5 months ago #2775

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www.ablehere.com/component/option,com_jo...tid,11/id,2774/#2774

hiya mark :)..yes chronic systemic sarcoidosis can be difficult to bring undercontrol, im sorry you are having this problem.....contolling the inflammation (and thus minimising scarring on the organ involved) and finding effective pain relief...can be a long process, and is person specific, wot works for one person may not work for the other.

you say that you are unable to take steroids, which are the first line of attack in sarcoid, i do hope that enbrel will help you.
below is a link to an overview of enbrel, as with other antiinflammatories, includins steroids, it can make you vulnerable to infection. if you suspect you have an infection, you should consult your GP/hospital.

it can take a few weeks before you notice any difference to the condition, so bear with it.

hang on in there my friend, and good luck.....:)

xx suzan xx


www.webmd.com/drugs/drug-16772-Enbrel+SubQ.aspx?drugid=16772
ETANERCEPT - INJECTION
Brand Name(s): Enbrel

Enbrel SubQ Uses

This medication is used alone or in combination with an immunosuppressant (e.g., methotrexate) to treat certain types of arthritis (e.g., rheumatoid, psoriatic, and ankylosing spondylitis), as well as a skin condition called psoriasis. These conditions are caused by an overactive immune system (autoimmune disease). The immune system attacks the body's own healthy cells, causing inflammation in the joints and skin.

Etanercept controls your body's defensive response by blocking the action of a certain natural substance (TNF) that is used by the immune system. Treatment decreases redness, itching and scaly patches in psoriasis as well as the pain, swelling and stiffness of joints in arthritis. This medication can stop the progression of disease and joint damage, resulting in improved daily functioning and quality of life.

This medication treats but does not cure autoimmune diseases. Symptoms usually return within 1 month of stopping the medication.

OTHER USES: This section contains uses of this drug that are not listed in the approved professional labeling for the drug but that may be prescribed by your health care professional. Use this drug for a condition that is listed in this section only if it has been so prescribed by your health care professional.

This drug has also been used to treat another autoimmune disorder called Wegener's granulomatosis. It should not be used with other immunosuppressants (e.g., cyclophosphamide) for this use.
How to use Enbrel SubQ

Read the Patient Information Leaflet provided by your pharmacist before using this medication and each time you get a refill. If you have questions about the information, consult your doctor or pharmacist.

Etanercept is injected under the skin of the thigh, abdomen, or upper arm, usually once or twice weekly exactly as prescribed by your doctor.

Make sure you learn the proper way to inject this medication from your health care professional, as described in the Patient Information Leaflet from the manufacturer. If you will be giving yourself the injection, your doctor may want you to have the first injection in the medical office.

Allow the medication to warm to room temperature before injecting. Do not shake the product. Before using, check this product visually for particles or discoloration. If either is present, do not use the liquid.

Before injecting each dose, clean the injection site with rubbing alcohol. It is important to change the location of the injection site each time you use this drug to prevent problems under the skin. New injections should be given at least 1 inch (2.5 centimeters) from an old injection site. Do not inject into areas of the skin that are sore, bruised, red, or hard.

Learn how to store and discard needles and medical supplies safely. Consult your pharmacist.

Your dosage is based on your medical condition and response to treatment. Do not change your dose without first consulting your doctor. Use this medication regularly in order to get the most benefit from it. You should start to see an improvement in 1 to 2 weeks. It may take up to 3 months to receive the full benefit of this medication.

Tell your doctor if your condition persists or worsens.

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Re:neurosarcoidosis 12 years 5 months ago #2783

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A good point well-made Suzan ...Ive been on Enbril for four years and picked-up any infection on the block....Never used to suffer with cold etc.....Last chest infection ,after a heavy cold left ,still persists today ...to the point where GP prescribed an Inhaler.......Shortness of breath come and goes with no idea if its long term.....
All a question of balance I suppose...If you had seen me before Enbril......Just as handsome,stunning wit,but less mobile .........xxxxx;)

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Re:neurosarcoidosis 12 years 5 months ago #2784

Thank you Suzan, good info. Tony, glad to hear that it helped you, a bit of insperation for me to think about until I use it. I have read some of your posts. you are quite witty, as well as quick witted. with all of that and your stunning looks u need to vacation with me in the states. You would be a women killer 4 sure, i don't mind the left overs but my wife would. lol
At this point i am just about ready to try anything to control the pain. It affects my family and the people around me so I really hate it. Just so all u UK peeps know, I am 5 hours behind u on the clock. I have heard that some of you foreigners aren't too bright so that is all the fingers on one hand or all of the toes on one foot. lol I know i will pay for that one. Don't be shy, slam me right back:P . I am also on a new NSAID but it hasn't had time to start working if it works at all.
I am amazed at other peoples strength and tenacity. I admire them. Thanks to all for making me feel welcome. Mark

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