SPECIALISTS PLAYING GOD

frenchyman
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Delete Post Manage Blog Diagnosed in March 2008 with Sarc and lymph nodes size of grapefruits, everything went well until july when rushed into General Hospital and diagnosed with neuro sarc as well. Was told by my pulmonary guy that they would leave prescribing methotraxate to the neuro team, four days later was told by neuro that they were passing back metho to pulmonary team and too reduce pred from 60mgs to 2mgs over eight weeks.
Well saw my pulmonary specialist today and told him I was feeling really bad, he checked my PFT, Lung X-Ray and Emergancy Bloods. He went through the roof because lung function is now worse than in march as growths are now bigger and I now have loads of nodules in lungs, bloods worse as well and SATS, ACES, ETC all over the shop. My specialist said that I should have started Metho when reducing Pred, but Neuro cocked-up. Well now my Pred is going up to 40Mgs and starting Metho at 30Mgs, also been put on 14 day monitoring to see if the growths etc go down if not then increasing until it does. Been told that because of neuro team mess-up I could end up on theatre table if things don't go well in 6 weeks. How can SO-CALLED Specialists play GOD with our lives, we've got enough problems as it is. Now I know what its like to be a ping-pong ball

4 replies

SarcoidPrincess

Hello Frenchyman,
I'm sorry your going through such a hard time. I hope your new course of treatment improves your condition and you avoid the operating room:)

harmles2
  • By harmles2
  • Posted October 2, 2008 at 7:38 am

Fm,
I feel for ya bud, sorry things have taken a turn for the worse.
I'm curious about a couple of things.... when they rushed you to the hospital, what specific tests did they use to determine that you have neuro sarc?

Were you responding (sarc gettting better) while on the pred that caused them to want to reduce it, or was the pred causing other problems with you that they wanted to reduce it?

A word about Dr's, ........ they are given a licence to "practice" medicine .... some lean very heavily on "practicing", while others know what they are doing. I think most try, but some just don't care either. Medicine is an art with science, some peoples bodies respond differently than others.

I hope everything works out for you
harmles2

priscurl
  • By priscurl
  • Posted October 2, 2008 at 7:53 am

This is disgusting. If I were you I would ditch that neuro team and find a new one. They were out to protect themselves. Obviously they had had little experience with neuro sarc, and fearing an adverse reaction or response, they left it to the pulmonologist to do the dirty work. By doing 'nothing' they have caused you more harm. Just the other week my GP told me she would no longer prescribe one of the medications I was on. I was shocked because you cannot just 'stop' many medications for sarcoid without there being serious repercussions for the patient. They are out for themselves, not you. I hope this will show you that you cannot rely on the medical profession for help. You have to look out for number one, just like they do.

Pris

frenchyman
  • By frenchyman
  • Posted October 2, 2008 at 12:12 pm

Dear All, Thanks for your comments - Hramless2 when I was taken in I had Palsy on right side of face and could hardly talk and most of my co-ordination had gone. The doc had an MRI, Lumber puncture and Bloods etc done, this was all brought about after having second dose of pnuemonia, at the time I was on 60mgs of Pred and Sarc at the time was under control. Whilst in hospital I was given 3 X 1000Mgs of Pred through IV to hit the neurosarc then over the next eight weeks from sixty mgs down to 2mgs, but should have started Metho at that time but pulmonary wanted to see if neuro wanted to do something different and if not start Metho, but neuro screwed up on instructions and told me to reduce Pred (lack of communications). Overall cannot fault my pulmonary consultant he has been great.

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