Hi Stardust,
I'm a newbie here, but came to find answers to some questions I have and saw your post. I have experience with both Medicaid and advocating for myself. A lot of what you posted resonates with me. Your symptoms are similar and also, I bet you have more. I have noticed that given time and the right people, more dots get connected and there are those AHA! moments.
Depending on what state you are in and the dynamic of your area, yes, you don't get to be too choosy with specialists, but you can look for a PCP that you gel with. I've gone through a few. I signed on to Medicaid in 2018 while I was finishing up school and income was low. I thought nothing could happen to me but an emergency, so it was my backup. Now, functionally disabled, I'm kind of stuck for the moment. The hope is to have these wonderful doctors help me enough to get off of it.
With that in mind, I have gotten pushier, which is not my nature. I've put aside the idea that I'm not deserving because of Medicaid. It helps to be direct about the symptoms, but simple enough that the doctors can control the questions they want to ask and the diagnosis they need to treat you through Medicaid. I've had some doozies that weren't even valid, but it got me treated anyway. I try to lead them to what I already suspect without saying what I suspect. For instance, my first symptom was debilitating gut pain and the inability to safely eat food other than bananas and rice. I also passed out when I ate and developed sleep issues. This is what I told the doctor. Every time I went in and until the basic tests were exhausted and I was getting worse. Blood work showed I was anemic. Then I pushed for a referral to GI. A few times. The PCP relented and referred me. Same with GI doc. Any time a new symptom piled on, I brought it up. If a test showed something out of the ordinary, I asked about it. Some doctors are gatekeepers with referrals, others are generous. It's good to sort out who is generous. Some of the offices don't have the staff to do it. I scheduled follow ups as allowed. The GI doctor was happy to get me out of his hair when everything seemed normal (it wasn't) and referred me to the Immunologist and Rheumatologist for joint pain and outsized allergies and reactions that added onto the GI junk. He recommended a low histamine diet. Then my heart got involved, I was scared and went to the ER. The doc recognized POTS and also the other stuff I already had going on. She referred me to cardiology and obgyn for good measure. Having chest pain helped me out here.
I saw the rheumatologist, thinking I would just be blown off. He was the first doctor to actually look at everything. He referred me to cardiology because my sitting hr was 115 and standing was 30+ beats faster. I didn't even bring it up. He said I needed to see someone who thought outside the box and knew who that should be. He requested a historical review of my colon pathology. I didn't ask him to or know he would. I didn't even know you could do this. The pathology showed significantly higher than normal mast cells in my gut. Saw the cardiologist, she diagnosed POTS pretty quickly and an echo to rule out other issues. On follow up, the rheumatologist diagnosed hEDS and said he is certain I have MCAS too after pathology. Said he's been seeing someone like me weekly and since 2016. Seeing a new immunologist next month. have another new PCP who is okay.
This was all on Medicaid and I am grateful for it. Doctors do seem to like to be the ones to diagnose. 🙂 They have limited time. Some are more patient than others. I think what stood out with the good docs I see, is that they really want to be experts in their field and had a tiny bit of humility to listen and most importantly, ask the right questions and dig. They also took the time to read my chart thoroughly. Pretty soon doctors who don't recognize these illnesses are going to be behind the curve. I don't want to see a doctor that I have to beg or convince. My time on this earth is limited too.
I hope you get the good care you need. Stay strong and persistent. Yes to tests. Keep lists like you have! They help so much when brain fog gets involved and you need to communicate for help.
