Guest Julia59 Posted March 7, 2006 Report Share Posted March 7, 2006 Hi everyone!I had a very positive experience with my new PCP today. The nurse did not ask my history---the doctor did------- I told her what I have below on my signature line on potsplace---you know the drill on all my health issues, so no need to replay. You can see them below. I thought she might fall over or something, but she just listened, and asked several questions. Then she mentioned something about chiari and EDS being related----and I told her I heard that around 20% of chiari patients have EDS. And I said that I thought the percentage is probably a litttle higher with EDS and POTS. I told her that POTS can get pretty extreme, and gave her a couple of examples of the most recent extreme cases I have seen.I thought it would be good for her to know the severity of some of the symptoms, and the secondary problems that can arise----creating complications, and creating a vicious circle. I told her about The chiari Institute web pace---and the EDS study video at the bottom of the home page. In a nut shell it explains the connection with all three conditions---EDS, POTS, and Chiari. I also told her that I am very keen in the fact that "chiari surgery" is not a cure for POTS. It takes a lot of careful testing to see if surgery would benefit anyone----with POTS, or no POTS. Most people with chiari---will have some form of ANS dysfunction------but not everyone with POTS/ANS dysfunction will have chiari, so very careful approach should be taken if patients display POTS, chiari, and EDS. In this case---it's difficult to figure out what is causing what----symptom wise. Sometimes, surgery will not change POTS/dysautonomia symptoms, but there has been many who have had success, as a lot of their symptoms have gone away-----sometimes completely.I told her that I do not want to risk surgery at this point, but also said I don't know how much more I can take with the symptoms, because they are getting so much worse. I may go to NY to TCI and just see the neurologist, so he can see how I am doing neurologically since I have been last diagnosed with myelopathy---and the worsening POTS symptoms---and OI. She understands that is is difficult to find a neurologist locally, because they just don't know enough about any of this---POTS, EDS, or the chiari---or chiari related conditions.I saw the discovery channel video----someone from the wacma website taped it for me and mailed it. This girl in the video is so much like ME-----almost the same exact scenario----except I am not in a wheelchair, not yet anyway, and I never want to be. They only mentioned POTS once, so it was disappointed, as my passion is with the further education on POTS and other forms of dysautonomia, as there could be so many causes, and it is so complex-----and rarely a quick fix. It is so chronic----and I have seen so many become so incapacitated, and losing so much of the life they once knew.I told her about POTSPLACE and the chiari web page. She told me to be sure and list the websites on my medical records that I was turning in. She is really interested---and I will send it via fax---with my new fax machine/copier/printer that i'm getting tomorrow night.Then she said----what do you have that is just the normal type of health issues----LOL. I said lets try to get the cholesterol under control----I told her my numbers. Then she asked the family history. Because my brother has colon cancer, and is undergoing treatment---she said it is important for me to get a colonoscopy. She set me up with the name of a gastro doc, and told me to set up a consult, then the test. I told her that I am extremely sensitive with drugs, and that was my fear of having the test. She said to talk with the GI Doc---and coordinate my care with Dr. Grubb to try and avoid any problems. I'm set for May 12th for the consult, and this works out fine, as my appointment with Dr. Grubb is April 18th.I have a complete physical scheduled with my new PCP on May 4th. First they like to meet with you, get your history, then give you the physical. What a great set up. I can actually see a little hope down the road for me, as this was a truly well put together PCP------and not only was the medical science there, but so was "common sense"----and you all know it's far to often that we don't see both. She looks quite young-----tiny little thing-----but this little whipper snapper is filled with enough intelligence to have a very bright future in medicine. And we all know that we have been down a long dark road of ignorance in the medical profession----so it's very easy for us to spot a good one out of the bunch.Julie :0) Quote Link to comment Share on other sites More sharing options...
Lulu Posted March 7, 2006 Report Share Posted March 7, 2006 WOw! That is good news! I wish you well in your new collaborative relationship with your new doctor. That is excellent that she is so interested and willing to learn! it is sad to say, but how unusual is that? shouldn't all docs be like that? sigh. I wish!I hope you continue to have a good relationship with her and that you feel better and better too. Congrats! keep us posted!love and light,lulu Quote Link to comment Share on other sites More sharing options...
Sunfish Posted March 7, 2006 Report Share Posted March 7, 2006 i am SO happy for you that your appointment went well. i know how rough the PCP search can be and hope this one continues with the way things started.... melissa Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted March 7, 2006 Report Share Posted March 7, 2006 I am so happy for you Julia..I was thinking of you when I was in Toledo on Sun/Mon..Glad that you you found a reasonably nice and willing to understand/learrn PCP...Take care and good luck at GI..Belinda Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted March 7, 2006 Report Share Posted March 7, 2006 I'm so glad that you have found a pcp to listen to you! It seems we all travel down that road to find someone who will take time out of there schedule and open their minds to a newer chronic illness. Sometimes I do believe that because they cannot see the illness physically, it makes them turn away. I luckily have found a pots doctor that COMPLETELY understands and was taught by Dr. Grubb and I also have a pcp who actually is doing research so he can help me along the way. It really is a true blessing! I hope you have found yours!Nicole Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted March 8, 2006 Report Share Posted March 8, 2006 YEAH!! WAHOO!! Julie I am so VERY GLAD that you found a "whipper snapper" (LOL ).. who is kind and knowledgable!! I am really glad about that..about the colonsocope thing.. I am scheduled to have one done next tuesday..and I too ma nervous about the prep/as well as the test.. just due to the fact that liquid isnt exactly my friend theseddays.. But the docsa re aware fo my conerns and are taking extra percautions.. extra IV fluid.. careful moniotring of my Hr and BP.. and the BP like to bottom out on heavy pain meds and HR goes high).. but on that front..they agree'd to use half the standard dose of meds on.. and have double checked that the meds are NOT in family of drugs that I allergic too.. i seem to handle demerol allright.. so they are going to use that.. and another drug along with it.. only in hafl the dose...so talk to the about meds.. make sure that they know our concerns as well as pots and BP issues.. so that they can be prepared for that "just incase " scenario.. and ask that they pump you full of fluids during/after the test!!.. Oh and have the test done at the hospital.. and not a a surgery center too.. better equiped to ahdnle what ever..and of course talking to grubb is good too!But great news on the doc dear!! I'm happy for you!!BIG HUGS!!LInda Quote Link to comment Share on other sites More sharing options...
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