sarcoidosis

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

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

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

Thanks for sharing, Suzan. I for one, do appreciate that very much.
Actually I am not very skillful with computer myself. But using the \&quot;copy and paste\&quot; 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 \&quot;c\&quot;. 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 \&quot;v\&quot; 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 \&quot;x\&quot;. Click on the place you want to move it to, hold down the Ctrl key and hit the letter \&quot;v\&quot; 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.
members.aol.com/jaynecg/private/copy.html

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

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