I got this baby yesterday as a rescue. She is one year old, and I was told she is a purebred miniature schnauzer. I’m not super into the schnauzer community yet but I’ve done a bunch of research today and I’m pretty confident that she is a liver pepper coat. She has not gotten the telltale schnauzer groom yet but what do y’all think? Pure bred?
(F22) I’m not diagnosed yet, but I fit all of the criteria of hEDS,and a good amount for POTS. After doing like 20+ hours of research including webinars and medical journals, I’m really confident that this is what I have. I don’t wanna be that person that self diagnosis and discredits a whole medical community so I’m starting to go through the process of trials and tests. I say I’m just starting to go through the process of trials and tests, but I’ve literally gone to like 25+ doctors throughout my life rheumatologist neurologist got an MRI scan and about 100 blood test trying to figure out what’s wrong with me since I was literally a toddler. My mom has supported me more than anyone, and my husband has picked up that mantle and continued to support.
After going through like eight different doctors telling me I had growing pains and hormone problems (a.k.a. puberty) I just about gave up at like 12 to ever find what’s wrong with me. I can remember ever since I was like five or six years old, having really severe joint stiffness and pain every time I woke up being unable to zip my own jacket or tie my shoes. A lot of people would call me a baby, but my mom always listened to me and cared when I said that it just hurt too much was really hard to grab such small things with my hands so she would get me Velcro shoes and always snap or zip up my jacket for me. She never gave up trying to figure out what’s wrong finally when I was like 14 I got a diagnosis of AMPS, even though there were lots of symptoms with that that I didn’t quite relate to, and a bunch of symptoms I had that weren’t explained by it. On top of that AMPS is kind of an umbrella term for a whole bunch of neurological and nervous system disorders so it doesn’t really pinpoint the problem plus it didn’t explain my syncope, weird heart rate problems and palpitations, hyper mobility and array of other issues. I also was considered on the autism spectrum when I was younger,And about four years ago, there was this whole study that started the push to look into the co-relation of autism to hEDS
Since just recently having my first baby, I’ve had really severe flareups from pregnancy all the way till now in all of my symptoms,
and one thing that reignited my search to go even deeper and find out what was wrong was when my eyesight suddenly got way worse over the course of less than a year. Deep down I’m like 100% confident that I have hEDS But my primary care is a nurse practitioner that quite frankly just doesn’t take me seriously. She’s kind of rude and literally said to me well if you had EDS then I’d have to know 15,000 people because she knows two other people with it like that would make it impossible for me to have it. Girl bye. She also compared me to another person She knew with hEDS as a way to say that I don’t have it, like there isn’t 13 sub types and within those a reasonable spectrum of difference in symptoms. Thankfully, my previous primary care provider actually took me seriously, but sadly, she had to quit due to personal reasons. I did have a appointment scheduled with a rheumatologist last year, and all he did was look at some of my tests and inflammation markers and say “well you don’t have rhumatlogic disease so I’m going say it’s probably fibromyalgia because you’re a woman, even though I didn’t do anything to screen you for actual symptoms of that and know nothing other than your blood work” i’m thankfully I finally got a scheduled appointment with a primary care doctor that is osteopathic and specializes in chronic illness and is listed on the ehlers Danlos website. I’m just really running out of steam.
I think a lot of people don’t realize that a lot of the anxiety and depression and anger that comes with chronic illness doesn’t even come from the illness, it comes from the people who act like they know everything about you Yet don’t give a crap about actually trying to help.
So I’m (f22) in the process of getting diagnosis for hEDS and possibly MCAS along with a few other problems, and I’m still like trying to work part-time and I have a baby.
Do any of y’all ever have those days where you’re like on the verge of tears and every now and then you’ll kinda just cry a tiny bit, but you don’t really know why you’re crying aside from the fact that you’re overwhelmed and in pain? And things that you like and make you happy will make you cry a little bit, and things that are sad that you don’t like will make you cry a little bit. So just the entire day you’re going in and out of mini sobs because dealing with it is just too much to bear internally.
I guess I’m just asking because sometimes I feel a little crazy like doing my dishes and crying for two seconds and then just going back to normal like ‘oh yeah, this is just my life’ Just looking for people who understand I guess.