mjan Posted July 16, 2009 Report Share Posted July 16, 2009 After 6 months since I was tested in the autonomic lab and getting so so answers from his RN.. I get my f/u appt with auto neuro. He aplogizes for not getting back to my PCP to help me get medicated following my evals.So.. I ask..what IS my dx?? I think he assumed I knew. I did not for sure. He told me I have autonomic dysfunction..and I added POTS?? He said its more global and complex than just POTS. It includes so many other things going on that I am seeing individual specialists..all intertwined. He looked at me and even referred to a recent seminar and study he attended...and told me we studied women JUST like YOU!! (complex chronic cases) And told me that I am not crazy that I have internal tremors even inside my BRAIN..and added..but I bet others have told you that is crazy, right?I DO have neuropathy thorugh out my legs/arms. And the muscle fatigue and pain issues grow worse.I probably have an autoimmune disorder like Sjogren's which IS connected to autonomic disorder.Those symptoms are getting worse along with the neuropathy. He is recommending the lip biopsy..but if and when I am ready which would confirm its sjogren's.He even added that the sleep disorder..GI stuff is all related. He is allowing ME to choose my course of tx/evaluations. He is recommending cutting BB down IF I start taking Clonidine daily.. or 2 Atenolol a day AM/PM and only take the Clonidine as a PRN. Again.. my choice!!He allowed ME TO MAKE MY OWN CHOICES???? WOW!! I am 60 and its amazing how wonderful these new docs have treated me. They WANT to find out what is wrong.. they want to LISTEN and ASK me what I want to do. They are agressive yet can complicate my symptoms by treating this separately. He offered to be their consultant.He relates well.. he is aware of the cost of testing and seeing multiple docs..meds..etc..for what?I wanted a NAME to this montster that consumes my energy and interupts my living.Today that name was confirmed. After so many years.. you let some things go...and continue to fight for what your priorities are..So.. yes I will have my endoscopic eval next week for GI and swallowing difficulties..and pursue narcolepsy/cataplexy sleep disorder evals..take the meds..and record how I am doing.I took care of 3 children alone..in poverty..struggling with my health issues..then a disabled husband until he died.. now that I am alone..its just time for me.Thanks for the support and taking the time to read this..means a lot.Jan Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 16, 2009 Report Share Posted July 16, 2009 Hi Jan,I am glad you have found some answers and some good doctors. I hope that your upcoming tests go well, and that they give clear direction for further testing/treatment.Take care,Rachel Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted July 16, 2009 Report Share Posted July 16, 2009 Wowwwwwwwwwwwwwwwwww. Glad you have a doctor that believes you, wants to help you and wants you to choose your medicines (My doc is like that and wish ALL DOCTORS WERE) They are only PRACTITIONERS and we do NOT have to follow their instructions if it is not agreeable to our bodies.Sounds like you've had years of struggles as well. I hope you get some relief and at least, some answers of specificities to help you make wise choices.Keep us posted.Soph Quote Link to comment Share on other sites More sharing options...
chipper Posted July 17, 2009 Report Share Posted July 17, 2009 Good for you!!!!! It's so great that you have a diagnoses and now a treatment plan!!!! Please keep us up to date on your progress.Bless you, Mary Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 17, 2009 Report Share Posted July 17, 2009 Hi Jan,I am glad that your appointment went well. Even though it doesn't make you feel physically better, it is wonderful to hear a doctor tell you that you are not crazy and confirm the diagnosis you have suspected for years! Was this with Dr. Barboi? Who are you seeing for the GI testing?Best wishes, Michelle (Broken_Shell) Quote Link to comment Share on other sites More sharing options...
mjan Posted July 17, 2009 Author Report Share Posted July 17, 2009 Hi Jan,I am glad that your appointment went well. Even though it doesn't make you feel physically better, it is wonderful to hear a doctor tell you that you are not crazy and confirm the diagnosis you have suspected for years! Was this with Dr. Barboi? Who are you seeing for the GI testing?Best wishes, Michelle (Broken_Shell)Hi Sweetie!!Yes Dr Barboi.. And Dr Park at Wheaton Franscian Franklin office..but the endoscopic eval will be done in Racine at All Saints because his start of the art equipment is ONLY at that facility.I get drugs...yeah!!! My daughter is taking me.thanks Jan...how are YOU doing? Have you seen anyone? Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted July 17, 2009 Report Share Posted July 17, 2009 congrats i can relate to you, as i fall under this big umbrella of dysautonomia and autoimmune. got word yesterday i need a reval of another TTT as i nearly passed out 4 times doing nothing. maybe i'm supposed to be on my knees praying.good luck~blessings and love~bellamia~ Quote Link to comment Share on other sites More sharing options...
mjan Posted July 17, 2009 Author Report Share Posted July 17, 2009 congrats i can relate to you, as i fall under this big umbrella of dysautonomia and autoimmune. got word yesterday i need a reval of another TTT as i nearly passed out 4 times doing nothing. maybe i'm supposed to be on my knees praying.good luck~blessings and love~bellamia~Oh my Bellamia..I am sooo sorry for ALL you are going through. Let me know what they find out ok?Hugs and Prayers be yours.Jan Quote Link to comment Share on other sites More sharing options...
jjb Posted July 17, 2009 Report Share Posted July 17, 2009 Jan,Where are you located? Our aut neuro in Mass alos has an interest in movement disorders.I am wondering if he might be able to help you in terms of the cataplexy.This as I have mentioned might be Ava's episodes of "paralysis".After 6 months since I was tested in the autonomic lab and getting so so answers from his RN.. I get my f/u appt with auto neuro. He aplogizes for not getting back to my PCP to help me get medicated following my evals.So.. I ask..what IS my dx?? I think he assumed I knew. I did not for sure. He told me I have autonomic dysfunction..and I added POTS?? He said its more global and complex than just POTS. It includes so many other things going on that I am seeing individual specialists..all intertwined. He looked at me and even referred to a recent seminar and study he attended...and told me we studied women JUST like YOU!! (complex chronic cases) And told me that I am not crazy that I have internal tremors even inside my BRAIN..and added..but I bet others have told you that is crazy, right?I DO have neuropathy thorugh out my legs/arms. And the muscle fatigue and pain issues grow worse.I probably have an autoimmune disorder like Sjogren's which IS connected to autonomic disorder.Those symptoms are getting worse along with the neuropathy. He is recommending the lip biopsy..but if and when I am ready which would confirm its sjogren's.He even added that the sleep disorder..GI stuff is all related. He is allowing ME to choose my course of tx/evaluations. He is recommending cutting BB down IF I start taking Clonidine daily.. or 2 Atenolol a day AM/PM and only take the Clonidine as a PRN. Again.. my choice!!He allowed ME TO MAKE MY OWN CHOICES???? WOW!! I am 60 and its amazing how wonderful these new docs have treated me. They WANT to find out what is wrong.. they want to LISTEN and ASK me what I want to do. They are agressive yet can complicate my symptoms by treating this separately. He offered to be their consultant.He relates well.. he is aware of the cost of testing and seeing multiple docs..meds..etc..for what?I wanted a NAME to this montster that consumes my energy and interupts my living.Today that name was confirmed. After so many years.. you let some things go...and continue to fight for what your priorities are..So.. yes I will have my endoscopic eval next week for GI and swallowing difficulties..and pursue narcolepsy/cataplexy sleep disorder evals..take the meds..and record how I am doing.I took care of 3 children alone..in poverty..struggling with my health issues..then a disabled husband until he died.. now that I am alone..its just time for me.Thanks for the support and taking the time to read this..means a lot.Jan Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 18, 2009 Report Share Posted July 18, 2009 Hi Jan, What a relief for you!!! Now you have this thing kind of named, choices for treatment, plan for further diagnostics... I'm so happy for you! You've been so kind and supportive to myself and so many others on this forum. I'm glad you were encouraged for a change!Janie Quote Link to comment Share on other sites More sharing options...
ladyt Posted July 18, 2009 Report Share Posted July 18, 2009 hi...=)So great for u..=) wow.. And great for the rest of us to, there is hope.. there is docs that lisen and care... Ust wounderfull... Quote Link to comment Share on other sites More sharing options...
mjan Posted July 19, 2009 Author Report Share Posted July 19, 2009 jjb: I live in MIlwaukee WI. I am seeing my pulmonologist/sleep disorder doc this week. I am going to tell him that there are other things these episodes can be coming from other than cataplexy/narcolepsy..but the Auto neurolgoist wants me to complete my sleep testing again. He says sleep disorders are related to Autnomic problems.Thanks though. I guess I have peripheral neuropathy in legs mostly and arms/hands.How is Ava doing? I am going to ask about paralysis..as sometimes I wake up and cannot open my eyes or move for abit ...but can HEAR. We've talked about this.. haven't we? I cannot remember..sorry.Hmmm...Jan Quote Link to comment Share on other sites More sharing options...
mjan Posted July 19, 2009 Author Report Share Posted July 19, 2009 Thank you all for the kind wishes.. its great to recieve support and not just give it.I am a hospice social worker and give and give and give...Warmly Jan Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.