Re: Re: Eyes? New Member

[Guest guest]

Hello,

Here's an excerpt:

'Sarcoidosis frequently causes an elevation of calcium levels in both the blood and urine.

Sarcoid lesions are also known to cause elevated levels of circulating vitamin D, which

may be seasonal. Consequently, conditions of both hypoparathyroidism and

hyperparathyroidism may occur due to imbalances in calcium metabolism.'

From: http://www.elaine-moore.com/LinkClick.aspx?fileticket=w8k4gk%2fbnB8%3d & tabid=142 & mid=593

It could just be me but this seems to directly contradict what your physician told you.

How can high calcium preclude sarcoid when sarc causes high calcium and also thyroid issues?

Personally I'd print up the report and show it to the doctor asking them for an explanation.

If the doctor is right though that could be great news. My limited understanding is that

thyroid issues generally respond to medication. Here's hoping for the best possible outcome

for you.

Cheers,

Darrin

To: Neurosarcoidosis From: goldendog55@...Date: Mon, 22 Mar 2010 00:50:15 +0000Subject: Re: Eyes? New Member

I had one person answer a few questions. Has anyone else had similar situations? Also, my internal med Dr. says I can't have this disease. She says I just have hyperparathyroidism, because all my calcium levels are so high. The Dr. diagnosing me is at the Universtiy of Washington med. center. Would it be better to just be treated there entirely for this? The drive is 2 1/2 hours each way!>> I have a couple of questions. I am currently going through the diagnosis> process even though I have been sick over 25 years with this. I am now 54> years old.> #1. At times, I can see so-so, and other times everything is too blurry to> see anything, except colors. With medication, can this get better? I can no> longer read and my eyes always hurt and are dry.> #2. Could someone tell me something about bone sarcoidosis. The bones in my> feet and lower legs are breaking without even falling or bumping them. Does> this ever get better?> #3. I am in extreme pain due to the swelling in my parotid glands. How> often does this affect people? For over 2 years, I have been looking like a> chipmunk. I've also had to have another tooth pulled, due to abcess.> #4. I get very sick being outside on a cloudy day for even 15 minutes.> When I go inside, it feels like the inisides of my eyes feel sunburnt and my> skin turns bright red. I also have a temperature regulation problem and I> am always hot, and then skin turns bright red. Is this common?> #5. I have been on disability for 20 years and in Dec., Social Security> decided I am not disabled and I have been committing fraud, because the Dr.> reports vary so much. The diagnosis should help in my case, I hope? Is> sarcoidosis considered a disabling condition?> > It seems that almost every organ is already affected! During this whole> time, all of the Drs. would say that there is something wrong with me, but> they didn't know what, so just told me that I had a lot of medical> problems. Its so nice to be able to hope for a diagnosis!> Thank you for your help! I just joined today and this all makes me very> worried! Judy>

[Guest guest]

Judy,

1. 4. 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-- (this is the structures that constrict when we get into bright lighting-- is impaired, 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) This 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.

2. Bone sarcoidosis does happen, although brittle bone fractures and breaks are more from years on steroids than from the sarc. I have granulomas along my spine, and around many of my joints- hands, feet, ankles, hips, shoulders-- so if you think of a chicken leg and thigh, you can imagine the spurs on the ends of the bones that press on the nerves-- and the pain sucks-- big time! One thing that Dr. Sharma recommends is a calcium/magnesium supplement for all of us on prednisone. What happens is the prednisone sucks the minerals out of our bones -- and if we don't supplement-- our bones become very brittle. Osteo-arthritis and Osteoporosis are side effects of long time steroid use, yet alone the normal aging loss of bone.

Here is an article on Vit D by Dr. Sharma.

http://chestjournal.chestpubs.org/content/109/2/535.full.pdf+html?maxtoshow= & HITS=10 & hits=10 & RESULTFORMAT= & author1=sharma%252C+om & fulltext=sarcoidosis & andorexactfulltext=and & searchid=1 & FIRSTINDEX=0 & sortspec=relevance & resourcetype=HWCIT

another:

http://articles.mercola.com/sites/articles/archive/2009/03/14/Clearing-Up-Confusion-on-Vitamin-D--Why-I-Dont-Recommend-the-Marshall-Protocol.aspx

another: http://www.thedoctorsdoctor.com/diseases/sarcoidosis.htm

Another: http://www.stopsarcoidosis.org/sarcoidosis/symptoms.htm

3. Paratoid involvement is common. Lymphadnephothy (sp) is part of the problem. Our lymph glands get congested with granulomas and the pressure is nasty. Making sure you get enough fluids down (stay away from caffeine, cokes, high fructose corn syrup juices) and that will help. You have to flush the toxins from the lymphs-- and a well trained lymphatic massage therapist can help. You can check with your local cancer center for names of massage therapists that understand how to do lymphatic massage-- (no oils-- use cornsilk so it doesn't clog the cells) and it will help. MSM powder has been my saving grace also--

4. See #1.

5. Systemic sarcoidosis is very similar to MS. Many of us are now considered disabled. Make sure your MD writes a letter telling Social Security that you continue to be disabled. He can outline the various problems. If he won't do it-- find another doc.

Here is a site:

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

I do hope this helps, let us know,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sun, March 21, 2010 5:50:15 PMSubject: Re: Eyes? New Member

I had one person answer a few questions. Has anyone else had similar situations? Also, my internal med Dr. says I can't have this disease. She says I just have hyperparathyroidism , because all my calcium levels are so high. The Dr. diagnosing me is at the Universtiy of Washington med. center. Would it be better to just be treated there entirely for this? The drive is 2 1/2 hours each way!>> I have a couple of questions. I am currently going through the diagnosis> process even though I have been sick over 25 years with this. I am now 54> years old.> #1. At times, I can see so-so, and other times everything is too blurry to> see anything, except colors. With medication, can this get

better? I can no> longer read and my eyes always hurt and are dry.> #2. Could someone tell me something about bone sarcoidosis. The bones in my> feet and lower legs are breaking without even falling or bumping them. Does> this ever get better?> #3. I am in extreme pain due to the swelling in my parotid glands. How> often does this affect people? For over 2 years, I have been looking like a> chipmunk. I've also had to have another tooth pulled, due to abcess.> #4. I get very sick being outside on a cloudy day for even 15 minutes.> When I go inside, it feels like the inisides of my eyes feel sunburnt and my> skin turns bright red. I also have a temperature regulation problem and I> am always hot, and then skin turns bright red. Is this common?> #5. I have been on disability for 20 years and in Dec., Social Security> decided I am not disabled and I have been

committing fraud, because the Dr.> reports vary so much. The diagnosis should help in my case, I hope? Is> sarcoidosis considered a disabling condition?> > It seems that almost every organ is already affected! During this whole> time, all of the Drs. would say that there is something wrong with me, but> they didn't know what, so just told me that I had a lot of medical> problems. Its so nice to be able to hope for a diagnosis!> Thank you for your help! I just joined today and this all makes me very> worried! Judy>

[Guest guest]

If you like the doc then stick with him/her. It makes for less hassles from an admin perspective and all the data collected is in one spot. Just a thought...but the relationship with the doc is most important

Subject: Re: Eyes? New MemberTo: Neurosarcoidosis Date: Sunday, March 21, 2010, 7:50 PM

I had one person answer a few questions. Has anyone else had similar situations? Also, my internal med Dr. says I can't have this disease. She says I just have hyperparathyroidism , because all my calcium levels are so high. The Dr. diagnosing me is at the Universtiy of Washington med. center. Would it be better to just be treated there entirely for this? The drive is 2 1/2 hours each way!>> I have a couple of questions. I am currently going through the diagnosis> process even though I have been sick over 25 years with this. I am now 54> years old.> #1. At times, I can see so-so, and other times everything is too blurry to> see anything, except

colors. With medication, can this get better? I can no> longer read and my eyes always hurt and are dry.> #2. Could someone tell me something about bone sarcoidosis. The bones in my> feet and lower legs are breaking without even falling or bumping them. Does> this ever get better?> #3. I am in extreme pain due to the swelling in my parotid glands. How> often does this affect people? For over 2 years, I have been looking like a> chipmunk. I've also had to have another tooth pulled, due to abcess.> #4. I get very sick being outside on a cloudy day for even 15 minutes.> When I go inside, it feels like the inisides of my eyes feel sunburnt and my> skin turns bright red. I also have a temperature regulation problem and I> am always hot, and then skin turns bright red. Is this common?> #5. I have been on disability for 20 years and in Dec., Social Security> decided I am

not disabled and I have been committing fraud, because the Dr.> reports vary so much. The diagnosis should help in my case, I hope? Is> sarcoidosis considered a disabling condition?> > It seems that almost every organ is already affected! During this whole> time, all of the Drs. would say that there is something wrong with me, but> they didn't know what, so just told me that I had a lot of medical> problems. Its so nice to be able to hope for a diagnosis!> Thank you for your help! I just joined today and this all makes me very> worried! Judy>

[Guest guest]

There is a lot of truth to sticking to one doc.  I started with a Pulmonologist first, had lung sx, he sent me to a neuro I didn't care for, and when I told him I did not want to go to her, he said OK.  I've been with this one doc for the past almost 16 years since dx.  I know have a

good Neuro, a good Rhematologist, but my main doc is the Plum, and my lungs are under control, the neuro is the worse. This is how is started.  With the help of all these awesome people here, I would find information, that

we now have in the archives and easy to get to.  I would take in article and experience from others to him, he would read them,  and TOGETHER we learned how to treat and live with Sarcoidosis, so if your doc does not seem to know what he/she is

talking about, it's because they don't really know anything about Sarc, and YOU need to be educated together, then you create this bond too.  I go to my Rhuemy for my Remicade, but my Plumy takes care of all my meds, and including the Remicade. 

Learn together, the doctor patient relationship is so much stronger that way.  WE both found out the hard way that shuffling around is just too much for both the patient and the doctor. I even spent some time at National Jewish in Denver!  Now I go to all local doctors in a fairly small town.

I hope this is helpful, I just came off Remicade, so am doing better, the week before and a few days after are very difficult for me. and I know I don't post a lot.  I see Tracie gets back to you all faster then I can and she is a Sarcoid specialist of the best kind, the patient kind.

But I have seen this in a lot of posts, what doc to see, should I change, what type.  That varies for everyone, find one you can talk to, and listens and you feel good about, then educate them:) in an easy way, print off articles, and even posts and then let him read them and decided for themselves. 

I wish the best for all of you, and know you are all in my prayers and thoughts. Marla

 

If you like the doc then stick with him/her.  It makes for less hassles from an admin perspective and all the data collected is in one spot.  Just a thought...but the relationship with the doc is most important

Subject: Re: Eyes? New Member

To: Neurosarcoidosis Date: Sunday, March 21, 2010, 7:50 PM

 

I had one person answer a few questions. Has anyone else had similar situations? Also, my internal med Dr. says I can't have this disease. She says I just have hyperparathyroidism , because all my calcium levels are so high. The Dr. diagnosing me is at the Universtiy of Washington med. center. Would it be better to just be treated there entirely for this? The drive is 2 1/2 hours each way!

>

> I have a couple of questions. I am currently going through the diagnosis> process even though I have been sick over 25 years with this. I am now 54> years old.> #1. At times, I can see so-so, and other times everything is too blurry to

> see anything, except

colors. With medication, can this get better? I can no> longer read and my eyes always hurt and are dry.> #2. Could someone tell me something about bone sarcoidosis. The bones in my> feet and lower legs are breaking without even falling or bumping them. Does

> this ever get better?> #3. I am in extreme pain due to the swelling in my parotid glands. How> often does this affect people? For over 2 years, I have been looking like a> chipmunk. I've also had to have another tooth pulled, due to abcess.

> #4. I get very sick being outside on a cloudy day for even 15 minutes.> When I go inside, it feels like the inisides of my eyes feel sunburnt and my> skin turns bright red. I also have a temperature regulation problem and I

> am always hot, and then skin turns bright red. Is this common?> #5. I have been on disability for 20 years and in Dec., Social Security> decided I am

not disabled and I have been committing fraud, because the Dr.> reports vary so much. The diagnosis should help in my case, I hope? Is> sarcoidosis considered a disabling condition?> > It seems that almost every organ is already affected! During this whole

> time, all of the Drs. would say that there is something wrong with me, but> they didn't know what, so just told me that I had a lot of medical> problems. Its so nice to be able to hope for a diagnosis!

> Thank you for your help! I just joined today and this all makes me very> worried! Judy>