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Posts (29)

1 day ago · Welcome Unexpected Visitors in Living with Mild Cognitive Impairment (MCI)

Thank you! Beautiful poem and came when I really needed to hear some inspiration. 💕

Thu, Sep 10 11:41am · Possible Ehlers-Danlos Syndrome with craniocervical instability in Bones, Joints & Muscles

Forgot to mention that that genetic testing cost over $1,000; would gladly pay for more genetic testing and pay for it again over time to figure more out.

Thu, Sep 10 11:20am · Possible Ehlers-Danlos Syndrome with craniocervical instability in Bones, Joints & Muscles

Always good to connect with someone who understands and had been down the same path. Would love to hear if you find that agency to help fight. I've had some genetic testing but it didn't cover this area at all since it was by a cardiologist. It did uncover some other genetic issues. I find it fascinating how we all apparently have multiple similar diseases. I love research and genetics. Wish that I'd found this out about 40 years ago!

Wed, Sep 9 8:21pm · Possible Ehlers-Danlos Syndrome with craniocervical instability in Bones, Joints & Muscles

Hi @zebraspoonie, I think that I've read all the posts, but I may have missed something and if so please forgive me. I was Dx with EDS hypermobility (so far) by one of my neurologists and was surprised by it, knew nothing about it and came home and researched all I could immediately. I always knew that we were a super flexible family but didn't know that there was a diagnosis for it so you can imagine my surprise. Now my joints dislocate randomly more than ever when it just used to be my fingers locking up. Rheumatology isn't the right department as it isn't an auto-immune disease. Neurologists, cardiologists, and dermatologists are the correct doctors to Dx the primary types. Learn everything that you can about Ehlers Danlos Syndromes (there are 13 types – most of which are rare). It's possible to have more than one type – don't we know about that! Now for the usual news, it's not unusual for it to take time to find a doctor who actually knows EDS. My Rheumatologist just tried to un-Dx me via over a telemedicine appointment then going on later to state it's not an AI disease. She wasted my time and appointment on the trying to get me to bend my arthritic thumb to my arm. I wasn't Dx on my thumbs, nor just on my flexibility. I wrote into her office a week later and provided polite feedback about this doctor appointment. When the hospital asked me to review my appointment, I gave the same feedback. Nothing's comes out of it other than a bill over $200.
Hang in there and do not expect a Rheumatologist to assist you with a Dx. Find the appropriate doctor for the type of EDS. Wishing you blessings.

Tue, Jun 30 9:08am · Why Genetic Testing for Mental Health Meds is Important in Depression & Anxiety

Stephen, I had genetic testing done 5 years ago by a cardiologist for something else so it wasn't a full gene testing. That's how we found the MTHFR genetic mutation. He didn't even mention it to me. I always request a copy of my lab reports and go over them. That's how I found out and took it in took my PCP and discussed it with her. She explained it a little bit was clueless as what to do. A mixing pharmacologist that I just happened to strike up a conversation with has it, so he explained more and that I needed to take supplements. I started researching then.

Tue, Jun 30 9:01am · Why Genetic Testing for Mental Health Meds is Important in Depression & Anxiety

Thank you for the MTHFR link as I will definitely go to there. Thanks also for asking about if I've reached my doctor.

I FINALLY, reached my doctor yesterday. She put my side effects from the Lexapro down to my other meds. Actually spent more time addressing my MTHFR and what I need to be taking (more than any other doc has) than my actual request to change my meds. Then concluded that if I really wanted to changed my meds to let her know. The eye side effects (Glaucoma) are pretty serious: curving lines, eye pressure especially when laying down, and a lot of facial twitching. I was cleared by eye doc of any signs of Glaucoma within 6 months before starting Lexapro.
There's several other different side effects. I can definitely pin these side effects to when I started Lexapro. I've been self-weaning off Lexapro and am now down to 5 mg./day. I have never contacted her before about meds and Lexapro manufacturer states that if Glaucoma side effects become present to immediately contact your prescribing physician, which I now have. Nothing's changing yet. I'd rather be on no anxiety/depression meds than to continue with these side effects that can become permanent.

Thank you all for lending your ear/eyes/empathy/knowledge. Have a blessed day. Susan

Sat, Jun 27 4:04pm · Why Genetic Testing for Mental Health Meds is Important in Depression & Anxiety

@summertime4 I empathize with your crying as I do too. It used to be that in doctor office that they'd actually empathize and try to take care of you when this occurred. Now, the front office employees totally ignore you and I even had my neurologist just act like it was another day in the office. It was my worst panic attack to date. 😳

Sat, Jun 27 10:46am · Why Genetic Testing for Mental Health Meds is Important in Depression & Anxiety

@lilypaws How're you doing? I've read in other parts that your home now. That was quite a surgery. Do they want you up and walking every day? After my fusion, that's what I had to do. My surgery was in 2013. Lately it feels like my screws are poking me and boy does that hurt.

I will talk to my doctor about those meds if I can but you know doctors don't like patients telling them how to do their jobs! Great way to get them grouchy usually or tell you to leave. I understand about the genetic factor of anxiety/depression as both my kids are dealing with depression and anxiety, my father fought depression all his life and committed suicide at 60, my mother fought anxiety and depression. I don't know beyond that. It wasn't talked about. Now they've labeled Gen Z as having both. How is that possible when they've been given everything? Wish they'd grown up like we did where they'd to go outside and play with friends, no TV, social media, phones, etc. to waste away the day with instead of doing something and having chores to do. My kids did have chores and have to play outside but we're still influenced by the technology advances. It was a fight.