RE: Where do I begin?

April 2, 2007

,

Can we all come over and drop kick your MD's to some other place-- where they can practice on snakes or lizards or alligators. I know, it'd be hard on the lizards-- but they could start on the big ones and work down to the little ones. An underground suite for these MD's would be too good.

Well, at least you know now where the blood problem is starting-- that's incredible, I've never heard of it before. I'll have to run that by the oncologist Wed when I go in for my Remicade.

I can't imagine what frustration your loss of vision is causing. I know I'd be livid. AAARGHHHHHH!!

I so wish I knew some answers for you.

Love ya,

Tracie

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April 3, 2007

, you remain in my thoughts and prayers. Blessings,Becky wrote: Geeze, it seems like forever since I've posted.. so here's what's been going on.. I got a second opinon from a different Hematologist.. He was shocked and appalled that no one at Vanderbilt has done a bone marrow in

the 5 years that I've been going there and Anemia has been an issue.. He says it is possible that I have "chronic illness anemia" but what the bone marrow showed was that I have absolutely "NO" iron in my bone marrow.. He couldnt't be definate as to why, but it was for sure why my Hct, rbc were dropping rapidly.. and the procrit wasn't working.. even at 60 units per week.. So, 3 iron tablets a day and 1 week later, I'm already thinking I feel some better.. not as short of breath, and have just a bit more pep to my step.. still not ready to leap tall building yet.. but I am feeling some better.. Problem number 2 my Right eye.. Where I had Cataract Surgery at the end of Novemeber, got a staph infection, lost my vision totally, had a vitroectomy twice.. Went to Louisville for a second opinion, where he told me it wasn't sarc, but that I had a scar tissue that was

laying across my retina, due to the debrie from the former surgeries.. Well, today.. I went back to see my Retina Surgeon.. Where I fully expected her to schedule my third Vitroectomy..but to my surprise she was kind of out of the pocket sort of thing and seemed as if she was out of the loop about my case.. I hate when that happens.. because that means they've forgotten what's happened up till now.. well she thought we had already done the laser surgery, I reminded her she didn't want to do that till after all the inflamation was gone.. Well she acted today as if the scar tissue wasn't an issue and that I really didn't need the 3rd vitroectomy..and that the laser surgery would fix everything.. Soo, I got my hopes up asked her to do it today.. and low and behold.. NOTHING!!! grrr, I kept waiting for it to break up the spotches and the blurryness.. it didn't happen and I was so disappointed.. she said nothing.. except to come back in 10

days..and gave me another round of pred forte drops.. So good news, and not so good news..Thank you Rose, Tracie and Marla for your support and suggestions.. I really appreciate your help.. Hugs,

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April 3, 2007

, I hope you feel better and better energy wise every day. Second and third, etc., opinions are really worth it sometimes. Sounds like this doc is on the ball. Maybe more opinions or a different eye doc is in order, too. My eyesight is only abit off in one eye, so I can't even imagine what you are going through. My prayers and good thoughts are with you to get some good results for your eyes soon. hugs S. wrote: Geeze, it seems like forever since I've posted.. so here's what's been going on.. I got a second opinon from a different Hematologist.. He was shocked and appalled that no one at Vanderbilt has done a bone marrow in the 5 years that I've been going there and Anemia has been an issue.. He says it is possible that I have "chronic illness anemia" but what the bone marrow showed was that I have absolutely "NO" iron in my bone marrow.. He couldnt't be definate as to why, but it was for sure why my Hct, rbc were dropping rapidly.. and the procrit wasn't working.. even at 60 units per week.. So, 3 iron tablets a day and 1 week later, I'm already thinking I feel some

better.. not as short of breath, and have just a bit more pep to my step.. still not ready to leap tall building yet.. but I am feeling some better.. Problem number 2 my Right eye.. Where I had Cataract Surgery at the end of Novemeber, got a staph infection, lost my vision totally, had a vitroectomy twice.. Went to Louisville for a second opinion, where he told me it wasn't sarc, but that I had a scar tissue that was laying across my retina, due to the debrie from the former surgeries.. Well, today.. I went back to see my Retina Surgeon.. Where I fully expected her to schedule my third Vitroectomy..but to my surprise she was kind of out of the pocket sort of thing and seemed as if she was out of the loop about my case.. I hate when that happens.. because that means they've forgotten what's happened up till now.. well she thought we had already done the laser surgery, I reminded her she didn't

want to do that till after all the inflamation was gone.. Well she acted today as if the scar tissue wasn't an issue and that I really didn't need the 3rd vitroectomy..and that the laser surgery would fix everything.. Soo, I got my hopes up asked her to do it today.. and low and behold.. NOTHING!!! grrr, I kept waiting for it to break up the spotches and the blurryness.. it didn't happen and I was so disappointed.. she said nothing.. except to come back in 10 days..and gave me another round of pred forte drops.. So good news, and not so good news..Thank you Rose, Tracie and Marla for your support and suggestions.. I really appreciate your help.. Hugs,

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April 3, 2007

, I'm so glad the second hematologist is apparently one of those "top 50% of his class" folks. The eye problems remind us that even those surgeries with excellent safety records can involve complications. I hope your doctors are able to get their act together & find a solution for you.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: "NS Group" <Neurosarcoidosis >Subject: Where do I begin?Date: Mon, 2 Apr 2007 23:23:52 -0500 (Central Daylight Time)

Geeze, it seems like forever since I've posted.. so here's what's been going on.. I got a second opinon from a different Hematologist.. He was shocked and appalled that no one at Vanderbilt has done a bone marrow in the 5 years that I've been going there and Anemia has been an issue.. He says it is possible that I have "chronic illness anemia" but what the bone marrow showed was that I have absolutely "NO" iron in my bone marrow.. He couldnt't be definate as to why, but it was for sure why my Hct, rbc were dropping rapidly.. and the procrit wasn't working.. even at 60 units per week.. So, 3 iron tablets a day and 1 week later, I'm already thinking I feel some better.. not as short of breath, and have just a bit more pep to my step.. still not ready to leap tall building yet.. but I am feeling some better..

Problem number 2 my Right eye.. Where I had Cataract Surgery at the end of Novemeber, got a staph infection, lost my vision totally, had a vitroectomy twice.. Went to Louisville for a second opinion, where he told me it wasn't sarc, but that I had a scar tissue that was laying across my retina, due to the debrie from the former surgeries.. Well, today.. I went back to see my Retina Surgeon.. Where I fully expected her to schedule my third Vitroectomy..but to my surprise she was kind of out of the pocket sort of thing and seemed as if she was out of the loop about my case.. I hate when that happens.. because that means they've forgotten what's happened up till now.. well she thought we had already done the laser surgery, I reminded her she didn't want to do that till after all the inflamation was gone.. Well she acted today as if the scar tissue wasn't an issue and that I really didn't need the 3rd vitroectomy..and that the laser surgery would fix everything.. Soo, I got my hopes up asked her to do it today.. and low and behold.. NOTHING!!! grrr, I kept waiting for it to break up the spotches and the blurryness.. it didn't happen and I was so disappointed.. she said nothing.. except to come back in 10 days..and gave me another round of pred forte drops..

So good news, and not so good news..Thank you Rose, Tracie and Marla for your support and suggestions.. I really appreciate your help..

Hugs,

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April 3, 2007

Thank you , I've had different ones of you in the group to tell me to get rid of these idiots.. but me thinking them being a teaching hospital was the way I needed to go.. I've recently talked to other patients and they've all had the same things as I have happen with inadequate care..and just being blown off... Oh, and lets don't forget Dr PrettyPants that would let me "complain" about my shortness of breath, or my chest tightness, or my palipatations, just not on the same visit.. and would only see me once every 3 months..