Image by Mystic Art Design from Pixabay
A miracle happened earlier this week-I found a unicorn! By unicorn I mean a medical doctor who actually takes my health issues seriously and is treating me with actual medications. It shouldn't be a miracle, this should be the default but I am so glad.
Long story short I never technically left the practice of my former primary care doc. My husband booked an online appointment with the boss/owner of the practice (I never met him) because ortho refused to help with my tendonitis issues because I was "too complicated" (even though I was on no meds except and asthma inhaler and allergy meds and not being treated for anything. But this is what all specialists say so the don't have to treat me.
I am not going to get into the tendonitis thing right now as that is a separate issue but at least the ortho did dx me with tendonitis in 4 tendons (at least I think some ligament issues too) and I am also having similar issues on my other foot.
This new to me doctor actually listened. There were some things we wanted to clear up in my chart especially the list of things my former PCP asked me to do when I originally saw her about the foot /ankle issue (again I was referred back to her from a podiatrist who didn't even do an exam). She wanted me to do a whole list of things including and MRI of the spine and other things I can't physically do.
Me not being physically able to do any of the things on the lists looked bad on me when the ortho asked why I didn't do the MRI (it wouldn't have shown anything anyway as my issue is the tendons not the spine . I likely would have got an MRI/soft tissue imaging for my ankle even without any accommodation) Being flagged as "non compliant" is very damaging to the patients especially since the non compliance is due to disability and lack of accommodations not unwillingness.
Anyway the head dr at the practice also looked into a bunch of other things. He told me he is caring for another severely disabled POTS patient right now and he understands how devastating the disease can be. That was shocking to hear. I am used to having tot explain everything to drs. His mouth literally dropped when he saw my HR/BP form the cardiologist a few months ago and he was like "why is no one treated your blood pressure? These numbers are way too high"
My BP is not typical hypertension as I am only hypertensive when upright. Orthostatic hypertension in general is not well studied or understood. It happens in approximately 30% of POTS patients.
He also noticed my two recent HS CRP numbers were very high (in the same range as MS, lupus and other autoimmune diseases). I mentioned this to 4 doctors and no one else cared.
This is a very frustrating thing for me to deal with. Many people with my cluster of illnesses have no abnormal findings in their tests. There are abnormalities, just not in the basic things drs screen for. This is used as an excuse to not treat or even worse dismiss the patient as hysterical. Yes patients are still being diagnosed with hysteria to this day, they just keep changing the name. Hysteria is not real. It is misogyny. Our uteruses are not freely roaming around our bodies reeking havoc. FFS.
People like me who do consistently have positive test results are also dismissed/ignored. Make it make sense.
I am mentioning this because I feel it's important. It is a total mind fuck when you consistently have abnormal findings , the same findings that in others are treated and yours are just ignored. This happens all the time to people in my demographic and illness clusters. Not only are we gaslit at the default when describing our symptoms but when tests "prove" abnormalities we are gaslit about those findings too.
We talked for a bit about other things and came up with an actual treatment plan. He also mentioned that he thinks the issues with my feet may be autoimmune or some other connective tissue disorder and wants to investigate that at some point in the future.
Side note: There is a lot of autoimmunity antibodies in ME and POTS. There also are many co morbidities with other autoimmune and neuro immune diseases.
I am on a new cocktail of meds and it's going well so far. The meds I am currently on
-clonidine
-provigil (these two are part of a "stack")
and a small amount of Tylenol 3 .NSAIDS are life threatening for me so are not an option.
I was given a steroid dose pack but stopped after 3 days because it was making my tendon pain worse which was surprising, I guess that happens sometimes.
I will update you on how the meds are going in another post. This post is already a bit too long.