I don t normally vent or complain about my actual health issues but this week...
yikes I'm sorry you are going through all this.
Diane, I do not see it as complaining. I see it as explaining. There is a huge difference. Never feel sorry for explaining what you were going through. You are worth every effort and I am sorry that you were struggling so. One step, one day, one minute, one moment at a time. None of us have gotten answers quickly. You are not alone and we are rooting for you! Hang in there.
Sounds about like me. I ended up having to pay out of pocket to go to Dr Barboi because insurance would only send me to in network drs all of which can't read autonomic testing results and they told me so but they would not refer me out or tell my insurance that. I saw Dr Barboi 2 years after my testing and he explained the results. Some in network drs where like ohh wow they is something one made this huge fight in saying he was saying things I told him too and that non of what he said it true. Dr Barboi put enough doubts in insurance mind for me to get testing done again. Funny thing is this second testing actually showed exactly what Dr Barboi said about the first test. Some things said inconclusive but other things way more clear. It was perfect. I went to Dr Barboi because I could self pay to see him and because I could self refer.
Where is this Dr. Barboi?
Thanks for your reality and positivity. It is so hard to be an educated person, well read, well studied, and well researched and go to appointments knowing what is supposed to happen, what tests likely should be done or considered and after waiting 18 months to finally get there for them to say they can't/won't help or "we don't do that here." I was SO mad at my dermatology appointment this week too...for tx psoriasis where I finally respond to a TNF blocker and they want to take me off because "I'm cured" I told them this is the first 6 months of my life since I have been 4 years old (now 38) I can look at myself in the mirror and not scare myself from my psoriasis on my face, that my patients don't say odd things about my rash, that if I so chose to put on make-up that I could and I wouldn't react. And they want to take me off without any medical reason to do so when I know if I stretch out the injection longer it all comes back? I feel so unheard! Meanwhile you go through things like this and lose out on work days and minds just go spinning. How would you ever be able to apply for disability without diagnosis? How do you begin to treat a sensitive body if you don't know what you are treating or why you react so strangely? Getting Family medical Leave did happen but they don't understand or appreciate "intermittent" needs when you don't have a label to give it. I want to get a POTS dog because I firmly believe this is a POTS and Mast Cell issue but I can't really do that until I have a diagnosis. I feel a service dog would be able to keep me working. Thanks for listening. I just keep typing away my feelings! It helps.
He is at Northshore in Illinois.
OK not froedert...the list indicates a doctor w/ that name there. That clinic is who did my testing but I did not get to see the actual doctor. Waited for my insurance to approve, then get an appointment, then they only could do testing, and no doctor. someday - right?
No he used to work at Frodert. Now he works at Northshore. My insurance would only pay for me to get testing at Frodert and that was it then they sent me back to UW Madison. I was not able to be seen for anything in Madison exactly except the faint and fall clinic doesn't even know how to diagnose or treat dysautonomia and they can't read the result. I got a referral from my primary to go to UW Neurologist to be seen for dysautonomia and they refer to the faint and fall clinic. I get my second opinion who says it is autonomic neuropathy so it is neurological then the UW Neurologist said too complicated for us you need to go back to Dr Barboi or to Frodert or to Mayo. Insurance won't send me to any of those and they eventually agreed to do testing again because they said their expert doesn't agree with Dr Barboi so they sent me back to get tested again and then now the test very clearly states autonomic neuropathy this time. It does make the orthostatic hypotension diagnosis I got earlier seem like it was maybe improvemed but I am happy it says the same thing dr Barboi mentioned for diagnosis. Now when UW Neurologist say they can't treat autonomic neuropathy they need to allow to go out of network except I am changing insurance now. I can't do this another year.
Diane, anytime! We are all here to support each other. That said, I might be able to help you with your psoriasis. I have plenty of my own that I have been battling and challenged with for about five years. I think I finally have it more under control than ever. Like you, I have it on my face. I also have it on my head I'm on my arms, legs, places I can't mention, etc. I have found that tricking psoriasis helps. That is true with many autoimmune type issues that come as a result of illness. Instead of going on anon here, if you would like to connect with me I would be very happy to share what I do to feel better. Feel free to message me here or you can text me at 715-829-8852. I have been making my own products in order to combat psoriasis. I had no idea that anyone could have it so bad. I especially did not think that somebody so young would have it. Was I wrong! I also found that none of the dermatologist that I saw really helped me at all. In fact, I think I had three diagnosis is for the same thing and none of them agreed with each other. All I could think of was why bother? I have found most of my help through homeopathic and natural remedies. Gentle zebra hugs!
Ahhh that makes complete sense! UW Neurology sucks! I got the run around with them and they were the Point of service provider my insurance sent me to even though I told my insurance UW can only provide faint and fall and that they won't diagnose or tx me and that UW doesn't even do autonomic testing. My insurance has refused mayo x3, I was going to pay out of pocket for mayo and they STILL won't see me. So I got into Froedert and insurance only says testing, my neuro back home (wauasu area) is like as far as I can tell you have dysautonomia but I can't tell you which type or what is causing it so you need to go to Mayo. Mayo denied her too. Milwaukee will not let me see the speicalist just a generalist which is STUPID. makes me mad.
Thanks for the connection - I'll consider it.
Diane, FYI, I do not sell any products. I only make my own concoctions to combat the psoriasis. I am making sure there is no misunderstanding regarding that point. I don't give my products away either. I giveaway ideas.
Sounds about like all the problems I have been having. I have UW as the in network and they even wrote letters to insurance and to my primary to send me out of network. Insurance still would not even let me go to Frodert. I was only allowed to go there for the testing. That is fine but the first test they actually messed up the interpretation which caused a lot of mess and problems with me fighting to go out of UW Madison for any treatment. I was told about Dr Barboi because he will take self referrals. He will work with insurance to the best of his ability to write information to have tests or treatments done in network if possible. He also will work with you if he knows you are self pay and change the cost of the appointment so it is cheaper. I called Mayo I would not go there because it was just way to expensive. I couldn't go back to Frodert because I needed a referral and non of my drs would write one. They didn't see a need because of the wording of my autonomic testing. It was not very clear unless you did research and actually read the details of the testing. I did that and they couldn't answer questions about inconsistencies because to them they said they don't do that testing so can't answer any questions about it. Frodert wouldn't answer any questions without an appointment. I tried to do that. I needed a referral to make an appointment. I finally decided fine I will find out myself and went to Dr Barboi to get answers. I was so happy I was able to make an appointment. I did give them my insurance information but insurance denied it anyway as I knew they would. The only issue since getting some answers from Dr Barboi is all the testing i need to be done in network and i need an in network dr to order them and I can't get an in network to order them. They are uncomfortable doing it without knowing more about the tests and all that.
If you have to pay out of pocket try to go to Dr Barboi he is in Illinois but not to far a drive.
Xxxxxxx Yzzzzzz I heard about him and he's super knowledgeable!!!
I know i see him out of pocket because of insurance issues. I fought way too long and still no help from insurance so i decided I would get my own help. He has done more for me in 2 appointments I have had then any dr in the 2 years since my first autonomic testing and he is limited by the fact insurance won't approve almost any treatment or tests he orders. I have to have in network drs order anything in network.
Sorry I am a little foggy right now and dizzy so I keep messing up what I am trying to type.
This is so valuable and helpful. THANK YOU SO VERY MUCH! I'm having a sleepless night 2:45am : (
Sorry to hear about your bad sleep. I have had those nights.
I have had 3 referrals sent to MAYO and never heard back from the other two. I am sorry. I gave up on them. Sending you much love and many hugs. This has been a POTsy and MASTY Week for me.