Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Lots of people, including me, are confused about the current state of Deborah's diagnosis. I believe she was first told PD then MSA then a scan (not sure what type of scan) in California showed mild PD and possible PSP, then a PET scan in New York showed Chiari... I'm probably missing something or have it confused... is there any agreement right now among doctors of what you have? It sounds like a combination of things at this point. I read your slides and reports but I'm still really confused, one of your scans had the word " normal " on it which really confused me. I wonder if you or can go through the chronology again of which tests showed what. Hugs, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Pam, I'll try to answer your question. 1. MRI, dx with PD in July 1999 2. MRI, dx with MSA in Sept. 2000 due to rapid progression, lack of response to PD meds and symptoms. 3. MSA dx stayed but was referred for DBS in October 2001 as to it's likelihood of relieving all symptoms of rigidity and muscle spasm pain resulting from it. 3. CT scans and MRI's confirmed DBS would be warranted in Dec. 2001 4. DBS surgery on the R STN on Dec. 21, 2001 5. Staph infection, brain, neck chest Jan. 2002... resulted in DBS removal. 6. Toxic reaction to Dilantin, Vancomycian, Clindomycian and Riphampton in January 2002 leading to hospitalization for presumed s Syndrome in Feb. 2002. 7. From Feb.- July 2002... more steroids, another hospitalization and immune system failure. 8. July 2002... saw a neuro ophthalmologist who stated that my declining eyesight was related to severe brain stem atrophy. 9. July 2002... Saw Dr. Levesque and his dx and report are on my photo site.... http://community.webshots.com/user/tenacitywins 10. August 2002, with Rx for F-DOPA Pet scan and the email you sent me from another list member about where to go and who to talk to got me in to see Veejay, a neuroradiologist and Long Island Jewish Medical Center. 11. Had F-DOPA PET scan in early August. Veejay said it showed only early PD and I should be out dancing. Requested that we stay and have a FDG PET scan to rule out PD+ syndrome. 12. Had FDG PET scan and it showed some minimal lack of activity in the mid brain region presumably related to a Chiari Malformation. 13. Test results are on my photo site along with pics of the two PET scans. called the hospital this morning after reading your post and they will be emailing us 2 positive PET scans for me to post to show the difference between NO PD and NO MSA to that of someone who actually has this disorder. 14. The tests that I did have and the results that I am aware of (still waiting for the actual medical reports to come in) are listed in a response that I made to and his questions. They still are not 100% sure of what I do have but they are 100% sure of what I don't have. This was confirmed beyond any doubt in the PET scans. The neuro's that I saw all concluded that without these two tests, they too would have said that I have classic MSA. They are currently treating me for seizures to see if that could be related to everything. My body is still too toxic to have any conclusive decision made. They want to taper my meds and give my body time to heal and then re-do the tests. The test for actual problems for the Chiari malformation were not done b/c I never got a severe enough migraine headache which was needed to show spinal fluid pressure. I hope this helps explain what is and is not going on. Pam, I don't have the address of the guy who sent you the email that you forwarded on to me about the PET scan machines and Long Island Jewish Medical Center. If you have it please send it to me. It is because of this group, everyone's support, your kindness and the mystery man's email that I was able to get to where I am right now. I can't begin to tell you how very very grateful both and I are for this. Hugs and Warm Fuzzies, Deborah aka Tenacity _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 The mystery man who had sent me the PET scan info that I happened to come across in my mailbox was Al LeBlang ASLB@... I'm not sure Al is still reading messages at this site as he was quite interested in scanning technology and surely would have chimed in by now. I know lots of people diagnosed with MSA or PD or another PD-Plus disorder are questioning whether or not to have an FDG PET scan. We know you are glad you had it and feel it gave you answers to some questions yet Dr. Lieberman, the National Parkinson Foundation medical director, says they are of limited use. I know people are questioning their or their loved ones diagnosis and looking for some guidance on this and it seems there really is none. People need to decide with their doctors on the best course of action for them. I think I recall that when I was helping you search for centers that did this test that there were only about a half dozen in the US. This is certainly the cutting edge of research with a technology so new that there is disagreement on it's usefulness as well as limited access to the technology itself. Hugs, Pam ----- Original Message ----- > I hope this helps explain what is and is not going on. Pam, I don't have > the address of the guy who sent you the email that you forwarded on to me > about the PET scan machines and Long Island Jewish Medical Center. If you > have it please send it to me. It is because of this group, everyone's > support, your kindness and the mystery man's email that I was able to get to > where I am right now. I can't begin to tell you how very very grateful both > and I are for this. > > Hugs and Warm Fuzzies, > Deborah aka Tenacity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 so u do not have msa??? Deborah Setzer wrote: > > Pam, I'll try to answer your question. > > 1. MRI, dx with PD in July 1999 > > 2. MRI, dx with MSA in Sept. 2000 due to rapid progression, lack of response > to PD meds and symptoms. > > 3. MSA dx stayed but was referred for DBS in October 2001 as to it's > likelihood of relieving all symptoms of rigidity and muscle spasm pain > resulting from it. > > 3. CT scans and MRI's confirmed DBS would be warranted in Dec. 2001 > > 4. DBS surgery on the R STN on Dec. 21, 2001 > > 5. Staph infection, brain, neck chest Jan. 2002... resulted in DBS removal. > > 6. Toxic reaction to Dilantin, Vancomycian, Clindomycian and Riphampton in > January 2002 leading to hospitalization for presumed s > Syndrome in Feb. 2002. > > 7. From Feb.- July 2002... more steroids, another hospitalization and immune > system failure. > > 8. July 2002... saw a neuro ophthalmologist who stated that my declining > eyesight was related to severe brain stem atrophy. > > 9. July 2002... Saw Dr. Levesque and his dx and report are on my photo > site.... http://community.webshots.com/user/tenacitywins > > 10. August 2002, with Rx for F-DOPA Pet scan and the email you sent me from > another list member about where to go and who to talk to got me in to see > Veejay, a neuroradiologist and Long Island Jewish Medical Center. > > 11. Had F-DOPA PET scan in early August. Veejay said it showed only early > PD and I should be out dancing. Requested that we stay and have a FDG PET > scan to rule out PD+ syndrome. > > 12. Had FDG PET scan and it showed some minimal lack of activity in the mid > brain region presumably related to a Chiari Malformation. > > 13. Test results are on my photo site along with pics of the two PET scans. > called the hospital this morning after reading your post and they > will be emailing us 2 positive PET scans for me to post to show the > difference between NO PD and NO MSA to that of someone who actually has this > disorder. > > 14. The tests that I did have and the results that I am aware of (still > waiting for the actual medical reports to come in) are listed in a response > that I made to and his questions. > > They still are not 100% sure of what I do have but they are 100% sure of > what I don't have. This was confirmed beyond any doubt in the PET scans. > The neuro's that I saw all concluded that without these two tests, they too > would have said that I have classic MSA. They are currently treating me for > seizures to see if that could be related to everything. My body is still > too toxic to have any conclusive decision made. They want to taper my meds > and give my body time to heal and then re-do the tests. The test for actual > problems for the Chiari malformation were not done b/c I never got a severe > enough migraine headache which was needed to show spinal fluid pressure. > > I hope this helps explain what is and is not going on. Pam, I don't have > the address of the guy who sent you the email that you forwarded on to me > about the PET scan machines and Long Island Jewish Medical Center. If you > have it please send it to me. It is because of this group, everyone's > support, your kindness and the mystery man's email that I was able to get to > where I am right now. I can't begin to tell you how very very grateful both > and I are for this. > > Hugs and Warm Fuzzies, > Deborah aka Tenacity > > _________________________________________________________________ > Join the world’s largest e-mail service with MSN Hotmail. > http://www.hotmail.com > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 so u do not have msa??? Nope, I do not have MSA. Hugs, Deborah _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.