New Member--long reply, get comfy!

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Hi, LaYanya! Welcome to our family. I'm very sorry that you have met up with the sarc monster, but this group will be a blessing & haven for you, as well as a wonderful source of information. First off, I have two resource links for you. The first will help you address an issue many of us confront: "looking good." Go to http://www.butyoulookgood.org/ You can read the first chapter online (at least you could the last time I tried), and order the booklet. It used to be about $5.00 US. I bought several & loaned them around to friends & family, even doctors. The second link is www.stopsarcoidosis.org. This is for FSR, The Foundation to Stop Sarcoidosis. They also have wonderful booklets that you can download or order. I believe the first booklet of each category is free. Another site for reliable info is the website for Dr. Sharma in S. California, www.sarcoidosissharma.com/. This whole situation can be very overwhelming, especially at first. Never hesitate to ask any questions, no mather how insignificent if may seem. Also feel free to gripe, vent, etc. We are here to provide the support & understanding that most family & friends are unable to, not because they don't care, but because it's often an "invisible" disease. You don't have a tumor hanging out, or other obvious signs, so it just doesn't seem real or serious. A suggestion: begin making a list to take to doctor visits. Write down questions & concerns. Also begin keeping a symptom diary; record every new symptom or change in symptoms. If possible, keep this info on your computer where it's easy to update & print out for each visit. An example for your symptom diary: in Sept. of 2001 I started feeling like I had little pieces of tape stuck to the bottoms of my feet; just small spots that didn't last long. Over time the sensation covered more of my feet & lasted longer. After about a year & a half, the front half of both feet were continually numb but also felt like they were burning (like when you have your feet too close to a fire). Within another year, there was still the numbness, but also feeling like little knives sticking my feet. And these symptoms of peripheral neuropathy (nerve damage) have continued to worsen & evolve. But in looking back I can see when it actually started, or when I became aware of it. Another suggestion is to take someone with you to the doctor's visit as an advocate for you. They don't have to have a medical background, but to be willing to stand up for you. For example, don't allow the doctor to leave the room until ALL your questions are answered or at least addressed. So, someone assertive but not obnoxious. Print or write out your questions & concerns & give a copy to your companion, as well as the doctor. It's also a good idea to begin keeping a written record of your meds, including OTC meds. Take a copy to each doctor visit. I usually print out a copy, but if I forget, they just copy the one I carry in my purse. I update it with any med changes, also updating the date, but I save the old lists in a folder in My Documents. It's been very handy for referring back to previous treatments. It's bizarre & ridiculous, but many of us have had to educate our own doctors. If your doctor is uninformed, but open to learning, great. If he/she has a closed mind, look for another doctor. It's vital that you have a medical team that you trust. Successful treatment of sarc usually involves lots of trial & error to find the medication combination that reduces your symptoms, while not producing unacceptable side effects. So patience is important, balanced with vigilance & a willingness to question. We are also becoming aware of the role that nutrition plays in maintaining & improving our health. Some are taking major steps, such as eating only organic foods, avoiding wheat, dairy & red meat; others are making small changes--reducing fats & carbs, increasing fruits & veggies. Supplements can be tricky, as there is really no oversight like with drugs. So just buying vitamins, etc. at WalMart or the dollar store will probably not be of much benefit. There are many companies that tout their products as the "best," but it's difficult to sort through all the claims & find the truth. We do have some members that are knowledgeable about supplements & alternative treatments. If you are interested, I'll post some info in another message--this one is going to keep you occupied for quite awhile!

I hope this has not been TMI (too much info!) at once. You will undoubtedly hear from other list members. All of us are in varying degrees of illness, so you may not get responses to question immediately, but give us a couple of days & we'll answer to the best of our ability. Occasionally a message gets lost in cyberspace, so if after a few days you have gotten NO response, please re-send the message. Also, at the bottom of this & all group messages are several links. Archives holds all the previous messages. Darlene, one of the co-owners, has been slowly sifting through this section, cleaning it up & making it more user-friendly. She's doing this despite some really serious health issues the last couple of years. Just type in your query (such as "fatigue") and many messages will come up. There are other links, as well as a photos section, so you can put faces to the names. I will also send you a message from Tracie, our other co-owner, which gives a good overview of sarc. Look for that in another message. Remember to take it one step at a time & know that you have an incredible safety net of hundreds of people all over the world!

La, because you've experienced vision problems, I've also included a post from Tracie, who has expertise in that area. I know that at least some of your vision problems apparently stem from the hydrocephaly (excessive fluid in the brain), but in case there are other mechanisms involved, here is some info that Tracie provided to another member. If these issues don't apply to you, perhaps another member can benefit from the information:

Vision is a huge issue with sarcoidosis. The fact that you have blurry vision off and on is a sign that your eyes are seriously dry. The cornea of our eyes is 80% water-- and like a pond, if it's still you can see your reflection easily. If the eyes are dry, then the mirror effect is blurred. It can also be a sign that you have high blood sugar--are you diabetic? Inflammation of the eyes, whether it is iritis or uveitis-impairs the structures that constrict when we get into bright lighting, and we become photophobic. Meaning light sensitive-- and it does sound like this is an issue for you. The challenge is that if this is happening, not only do you need the predforte drops but you also need atropine drops to keep your eye dilated -- so that you don't end up with adhesions - where the iris of the eye adheres to the pupil. The uveal tract is a spiderweb-like meshwork that works with the iris of the eye to regulate the intraocular pressure. When we have iritis or uveitis, it is very easy for us to end up with glaucoma-- and with glaucoma, you can lose your peripheral vision-- and eventually if left untreated, your lose your vision entirely.

You also stated that you end up with seeing only color clearly-- the macula of our eyes is where we get our central vision-- and there are "rods" and "cones" that send the message to the brain as to what you are seeing. The cones control the central vision, color vision, and clarity. If these impulses are interrupted, and they often are if you have iritis or uveitis-- then you'd not be seeing clearly-- and you would have the pain in the eyes-- especially if the intra-ocular pressure is high. Many times when we had patients come into the office - they'd tell us that they figured they had the flu, as they had the headache, the light sensitivity, the nausea and vomiting, so they had decided not to go in to the MD. By the time they came in, they were realizing that they had lost some peripheral vision-- and we'd have them there all day working to get the pressure down and save their eyes. (I used to work for an Ophthalmologist and was a Certified Ophthalmic Assistant.) These are serious signs to get back in to the MD-- and have him check your pressures, do some visual field tests, and if necessary laser surgery (iridectomy) to lower the pressure in the eyes. (the laser burns a hole into the iris, allowing the iris to work freely as it should to lower the eye pressure.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: ladyt19119@...Date: Tue, 23 Nov 2010 06:01:01 -0800Subject: New Member

Good Morning,

My name is La and i have recently been diagnosed with neuro sarcoidosis. Allow me to introduce myself. Before getting sick I was a vibrant 36 year old mother of two boys and a wife of 15 years. I was team mom, working and always busy running around with my boys and their sports. Sometime in February I started having problems with my eyes. I had a lot of inflammation in my eyes and my vision began getting really blurry. One morning I woke and discovered that I was blind in one eye. It was discovered that I had severe cerebral fluid building up in my brain which was compromising my sight. I had to have a shunt placed in my head to continuously drain the fluid. While in the hospital they discovered that my cerebral fluid had a lot of white cells. I had inflammation in my brain (white spots on the MRI), severe fatigue, joint pain and my sed rate was 140. Test after test with results coming back negative for Lupus and MS noone could figure out what was wrong with me. The neurologist, rheumatologist, and opthamologist determined that all of my symptoms was a result of neuro sarcoidosis.

My eye sight got a little better after the surgery but I have permanent optic nerve damage and still have a lot of inflammation in my eyes that wont seem to go away. Therefore, my vision is really blurry and my depth perception and periphrial vision has been compromised. I have been really depressed and disgusted. I just want my life back!!!! Unable to work and do for my family has been really hard on me. On top of that I have no health insurance. Go figure.

After reading some of your posts, I see I am not the only one with memory loss and trouble finding words to express myself. I thought that it was just me being frustrated. I was not aware that this was one of the syptoms of the disease. I often find myself forgetting words and trying to find the right word to fit in the sentence. I am having trouble concentrating on reading and doing my school work. I cant seem to remember and comprhend the information. Prior to me becoming sick I had a 4.0 in school. I also find myself with the shakes and in pain when I over exert myself. Which is rather easy to do these days. I did not mention this to the doctor because I thought it was just me being a worry wort. But after reading your posts I see this is something that I need to mention to the neurologist. They have me on prednisone (40mg) a day and I have been on this for the past two months. I hate the side effects and how it is making me gain weight. They want to keep me on the steroids for about 6 months and then give me a remicade infusion drip. Is anyone familiar with this?

Sorry this is sooooo long but I have been holding this in and had trouble talking about this. I look forward to meeting everyone and getting to know everyone. Its a relief to talk to people that understand my issues and not have people look at you like you are crazy because on the outside I look perfectly fine. Thanks for listening and look forward to everyone's feedback and posts.

La Boswell