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Trying to find out more about Sarcoidosis

Marshaneedsanswers
  • By Marshaneedsanswers
  • Posted September 29, 2008 at 3:59 pm · 10 replies
  • Shared with the public
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I just found out on 9-14-08 that I have sarcoidosis it was found in a lymphoid gland WELL a whole bunch of them was found I am trying to find out if the rest of my symptoms are from sarcoidosis I don't get answers from any of my Doctors !! My symptoms are dizziness , headaches , weakness in my arms and legs , confusion , memory problems, numbness in my face , chest pain , blurred vision , joint pain , tremors arms , face , and now my legs , wheezing when I breath

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Dizziness Surgery Weakness Pain Memory Confusion Sarcoidosis

10 replies

GloriaV

Hi...I am new to the site...but saw your post. Any of these symptoms can be part of Sarcoidosis. (I was diagnosed 17-18 years ago). No one person has the same symptoms. Search the web for doctors in your area that have had success with other Sarcoidosis patients. This is really important! Almost every doctor will tell you they are "familiar" with it...but that does not mean they have treated anyone successfully. I have found over the years to adjust my daily schedule to how I feel. If I am dizzy I don't push things or try to work it off. It doesn't work! Good luck...and feel free to throw questions at me...I can try to direct you to people I have worked with.
Gloria

tonyad

Marshaneedsanswers,

ditto on the same sx you are describing. Except for the wheezing when I breath.
Are you on any meds at this time or are they doing a wait and see approach?

I am sorry that you have been dx with sarcoid. please read as much as you can and this is a great forum of really good, geniune people here. So feel free to come hear for questions, answers, tips, or......just to vent :)

Take Care,
~Tonya

Marshaneedsanswers

Thank you for your reply The only problem is finding a doctor that will take my insurance or even one that doesn't sit there and scratch there head and say I don't know where to start

Marshaneedsanswers

Thank You for your reply I am not taking anything for sarcoidosis but I am on Parkinson medication for the tremors pain meds. don't help with the pain and I use inhalers for the wheezing

tonyad

marshaneedanswers,

Have you tried to google some docs in your area? (I am sure you have) Then when you get their name and number just go through each one and call to see if they will except the insurance.
Otherwise you need to get hold of your insurance carrier and have them give you the names of doctors.
There has to be doctors out there who take your insurance or else it is almost pointless to even have that insurance company.
What state are you in??

Perhaps someone from this forum can give you names of docs from the same state you are in. Hopefully someone will chime in on this and give you some information.

Do you have neuro sarcoid also?
If not, private message me and I will try and help research to try and help find someone for you. No worries, we will get you to a doc and to one that cares!
Have a good night. Rest well....
~Tonya

daverojo77

The University of Pennsylvania has a dept where they specialize in Sarcoidosis they are supposed to be one of the best around. Is this near you?

daverojo77

Check out this article

http://www.pennhealth.com/ency/article/000076.htm

Marshaneedsanswers

I thank everyone for your replies I am not sure of the extent of the sarcoids I just found out that I had it when they did surgery on a lymphoid that was enlarged and painful and it wouldn't go away so they removed it and attached to it was a lot of little masses that the pathology department said it was sarcoidosis

GloriaV

Hi....you have more than one thing going on and I know how hard that can be. I would do as suggested...call you insurance company...explain to them you diagnosis and try to get doctor's names from them. Then....call each one and ask have they had other patients that they treated for Sarcoid or just "read about it"....If you don't get anywhere with that....I depending upon where you live...definitely check with local hospitals if they have any programs for you to get involved with. In addition to Univ. of Phili...Temple in Phili is also great...there are some good (and informed) doctors in Newark, NJ at Beth Israel and also New Brunswick NJ at Robert Woods....Hope this helps!

Marshaneedsanswers

Thanks for your reply my family doctor went me to see a doctor in chester county she said that he will most likely send me else where I asked her why not cut out the middle man and go to someone that knows what they are dealing with I got it is the insurance company this doctor has to refer me to another doctor before I can go.

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