Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 A=Both my hands and feet are numb, but I only experience pain in my feet. I can't understand why pain only emanates from my feet. But don't get me wrong, I'm not looking forward to pain from anywhere in my body. Under these circumstances, I'm just curious that my hands are pain free. Margie, I imagine that you have sarcoid granulomas in your feet, but not in your hands. I know that for me, my feet, ankles, and hands have severe granulomas, which put pressure on the nerves. Not fun. B=I'm unstable when I walk; bobbling, jerky, and wobbling from side to side. My instability does not always occur in any order, because sometimes I jerk while walking,other times its wobbling. I'm not sure why? Again, I can only pull from my experience, but depending on whether you have granulomas in your brain, or even just inflammation (generally in the form of vasculitis ) depending on what portion of the brain is involved, it can cause the imbalance or the jerkiness. Do you have restless leg syndrome also? I know Sinement helps me with RLS. C=My meds frightens me; I'm taking 40mg of prednisone, 600mg of neurontin, morphine and 1000mg of cytoxan once a month. As you can see, my sarcoids are active and I'm in constant pain. Sometimes these meds work and other times they just don't. I have obvious side effects except from the narcotics, yet doctor's wrong reduce dosage. Your thoughts?? I'll pass this part off to someone else. You might want to consider talking to your pharmacist. D=Can anyone recommend a sarcoidosis specialist in the northeast area? Please include their phone number/e-mail address. This may be of help-- P. Baughman, MD, University of Cincinnati Medical Center, PO Box 670564, Cincinnati OH 45267-0564, Tel: , Fax: , E-mail: Bob.Baughman@... Dr. Baughman treats quite a few of our members and is considered to be the #1 expert in sarcoidosis. Where in the northeast are you from? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 tiodaat@... wrote: In a message dated 9/11/04 3:06:56 AM Pacific Daylight Time, margritastormy@... writes: after seeiing my first pain doc (one and two were anestesiologist, the third and final is an oncologist) I was prescribed klonipiin (half mg three times a day) All subseuent docs and pain docs were on board. After about four year it was upped to one mg three times a day. Also, you might see if the docs will let you up your neurontin. What i've always heard is that this is the one drug that doesnt have a celiling. increasing it slowly has been a godsend to me. After being on all the cutting edge opiates/narcotics, my oncologist pain doc took me off the fentanyl patch (which worked but it was hard to adjust up and down) he put my on methadone. It actually works, and for the breakthrough-- guess what? More methadone. The doc says we can go much higher dose and since the drug only works on cutting through pain without anykind of high or feeling of well being, the federal government likes it best. I tell you. I was on vicodin only for breakthrough, but I do miss taking a little break from the weight of feeling so crummy. right now I am also taking vioxx for the joint pain and prevacid from the what the steroids I took did to my upper digestive problem. I was on sixty mg a day for over a year, and it destroyed some things forever. Currently I am on humira, I have tried remicade and did well on it for about six months. I was also on cytoxan whicH I had every other week. You have my respect. I also tried arrava and mtx, but myj digestive system is way too sensative for anything strong by mouth. I hope the increase in neurontin and the addition of klonipin helps. If you don't have a pain doc, see if you can get one. Managing pain is soooooo important for all of us. Kelty C=My meds frightens me; I'm taking 40mg of prednisone, 600mg of neurontin, morphine and 1000mg of cytoxan once a month. As you can see, my sarcoids are active and I'm in constant pain. Sometimes these meds work and other times they just don't. I have obvious side effects except from the narcotics, yet doctor's wrong reduce dosage. Your thoughts?? I'll pass this part off to someone else. You might want to consider talking to your pharmacist. D=Can anyone recommend a sarcoidosis specialist in the northeast area? Please include their phone number/e-mail address. This may be of help-- P. Baughman, MD, University of Cincinnati Medical Center, PO Box 670564, Cincinnati OH 45267-0564, Tel: , Fax: , E-mail: Bob.Baughman@... Dr. Baughman treats quite a few of our members and is considered to be the #1 expert in sarcoidosis. Where in the northeast are you from? ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 when i was 1st diagnosed with sarcoidosis i was told what a benign disease it was and that i would probably never know it was there in my lungs. it hasn't even been 6 months and I have it in my head (brain??) and today i found out it is causing another disease in my eyes. I need to find a doctor that has a clue because mine doesnt at all and when this problem with my head started all he kept doing was treating my sinuses!! saying this will help you with your hearing and vertigo... I am at a loss now and I am trying to find someone new. Does anyone have any ideas or suggestions? Im getting desparate thank you so much for any help I really appreciate it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2004 Report Share Posted September 14, 2004 , My heart goes out to you! I am dealing with the same problem right now....finding a Doctor who is really in touch with Sarcoidosis and who cares about helping me....I need an Immuneologist but there are none in my area anywhere so I am dealing with a family doctor and a cardiologost/pulminary specialist and on the 27th of this month I go to a new doctor, a rheumatologist...........so we shall see............. Like you, my Doctor told me when he found this sarc that most of the time one round of the prednisone would put it in to remission! Well.............WRONG!!!!!!! I still have it and it is getting worse all the time.......already damaged my lungs and now it is roaming around going on to bigger and better things! Where do you live? Give us some info and perhaps someone on the list knows of a Doctor in your area............. Hugs, Darlene Re: Overwhelmed when i was 1st diagnosed with sarcoidosis i was told what a benign disease it was and that i would probably never know it was there in my lungs. it hasn't even been 6 months and I have it in my head (brain??) and today i found out it is causing another disease in my eyes. I need to find a doctor that has a clue because mine doesnt at all and when this problem with my head started all he kept doing was treating my sinuses!! saying this will help you with your hearing and vertigo... I am at a loss now and I am trying to find someone new. Does anyone have any ideas or suggestions? Im getting desparate thank you so much for any help I really appreciate it. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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