doctors

Join the Conversation on
doctors
2.1K people
0 stories
363 posts
Explore Our Newsletters
What's New in doctors
All
Stories
Posts
Videos
Latest
Trending
Post

An interesting development

#Doctors #Scoliosis Hi. How is everyone today? Before we officially go into fall I would like to share a interesting development that has quietly taken shape. I was looking through my test results & noticed one that was tucked in there. My spinal scans from the spinal specialist & whats hypocritical of him is when he told my mom that everything is normal. Yet the report said otherwise. They noted a dextroscoliosis of 26 degrees in my neck, a 13 degree levoscoliosis in my upper spine & a marked coronal imbalance measuring 18.1cm or 7 inches. So what does this mean? Well, a few things it means a rare form scoliosis called cervicothoraric scoliosis in combination with degenerative signs in the cervix & a laryngocele with other findings on brain scan this would point to a little known condition called klippel feil syndrome. BUT WAIT! there is one very profound problem nothing in my genetics mentions any gene related to klippel feil. however, this caught my attention. There is a locus on 8p22.2 that is known to cause laryngeal malformation. This condition is autosomal dominant. My mom has complained about hearing loss & a stooped posture in her neck for years that isn't being cured by chiropractics. Now I'm starting to wonder if my degenerative disc disease of the neck & these new findings will point us toward a new diagnosis. Unless it's just a spinal injury but considering the development of a zenkers diverticulum & prior pinched nerve causing dizziness (radiculopathy). It's also associated with jaw disorders like micrognathia of which I have.

Anyways, everyone. . .have a great fall & wonderful new year. ;)

Post

Metabolic panel results

#ChronicIllness #Autism #Doctors So. . .here we go again. Results are abnormal for metabolism. We have done inborn error of metabolism to normal results. What. On. Gods. Green. Earth??? Low carbon dioxide(again lower than result done a year ago), high creatinine serum, slighty high A/G ratio (again), potassium (new, slightly low.) I don't know all it tells for A/G ratio is some kind of kidney, liver, intestinal disease. I'm seeing a G.I. Crossing my fingers that's she's nice. Neurologist is officially stumped as to what to do & I'm getting pretty pissed off. Since I don't technically have a gp (a care coordinator has been assigned to my case) I'm going to put serious pressure on the G.I to hopefully come up with something that makes sense because I'm to get autoimmune, endocrine, & infectious disease doctors...This is a medical nightmare. Forget crap like FND this, this is our monster! (squeals* I'm scared-) Let's see the face of this primary who told me my problem is transient!

2 reactions
Post
See full photo

My Epiphany Letter.....I Need My Life Back!

Sometimes, life with chronic illness can be overwhelming. It’s not always because of your disease either.

It’s often all the appointments, including doctors, allied health professionals, equipment trials, dealing with government departments, routine tests and procedures, etc. It can become a full-time job. Your body becomes your business, your place of work, and you can quickly feel as if you are losing all sense of illness/work/life balance.

In fact, you wake up one day and realise you no longer have a life, and each days agenda is being determined by anyone and everyone, but definitely not by you.

This was my epiphany when I woke up the other day. I had a list of upcoming events, life changing events in many regards, running through my mind.

In this podcast I share with you the epiphany moment I had, resulting in a life changing letter where I draw a line in the sand and take my life back!

www.mymedmusings.com
medicalmusings@bigpond.com

Listen to the most recent episode of my podcast: My Epiphany Letter anchor.fm/my-medical-musings/episodes/My-Epiphany-Letter-e28fabs

#Podcast #ChronicIllness #RareDisease #Epiphany #lifechange #Doctors #Lifebalance #Wellbeing #OccupationalTherapist

My Epiphany Letter by Medical Musings With Sam

Sometimes, life with chronic illness can be overwhelming. It’s not always because of your disease either. It’s often all the appointments, including doctors, allied health professionals, equipment trials, dealing with government departments, routine tests and procedures, etc. It can become a full-time job. Your body becomes your business, your place of work, and you can quickly feel as if you are losing all sense of illness/work/life balance. In fact, you wake up one day and realise you no longer have a life, and each days agenda is being determined by anyone and everyone, but definitely not by you. This was my epiphany when I woke up the other day. I had a list of upcoming events, life changing events in many regards, running through my mind. In this podcast I share with you the epiphany moment I had resulting in a life changing letter where I draw a line in the sand and take my life back! www.mymedmusings.com medicalmusings@bigpond.com
3 reactions
Post

quick update

#Genetics #Birthday #Doctors

Hi everyone. I emailed the receptionist for the genetics department & she told me that she has a June 21st appointment open. Granted I work that day but the significance of that day is it's my birthday. It will be both weird & awesome at the same time. Let me ask the audience: Have you ever had an appointment that just happened to be on your Birthday? Tell me in the comments below.

P.S I hope I didn't steal any mighty leaders thunder with that question.

Post

Major update conclusion

#Doctors #Diagnosis #CTScan #MRI

(Part 2) So, where does this leave us with all findings? That's the thing. . .I got a strange call from a sympathetic receptionist a few days after the neuro appointment who seemingly understood my situation. She told me that he had reviewed my neurology report & was very interested in my case. She understood the medical gaslighting that was going on & she asked me, did your previous geneticist do a connective tissue panel? I gave the long answer of no. She told me he would like to see you when all these appointments are over because he has some ideas as to what we are dealing with here. Who was this person? The neurologist personal geneticist. All that's left besides pt is neuro follow up & I'm going to see this geneticist who is interested in my case. But you wanna know what makes him standout to me? His clinic was established as recently as 2021! 0_0

The original genetic testing didn't cover disorders of collagen function & I think I know what "some of his ideas" are. . .

All I'll say is watch this space. Summer is about to HEAT UP! Peace out everyone.

Post

Major update

#Doctors #Diagnosis #MRI #ctscans

(Part 1) Hi guys & gals. Some very interesting developments have surfaced over the last few weeks & admittedly some worrying things. firstly, the neurologist appointment went fine but there quite a few new diagnosis that where made. Firstly I have conjugate gaze palsy, an Astasia Abasia due to what he thinks is FND, however at the end of his report he stated an unspecified ataxia. Your guess is as good as mine on that one. Lastly, he diagnosed me with a dilation of my ventricle that causes accelerated aging i.e dementia. He wanted to send me to physical therapy & they where nice so that's good. I saw the spinal specialist & this one. . .this one sent a chill down my spine literally. The examination went fine & he recommended botox injection from his clinic if the current rehab facility doesn't succeed. My poor mom said "we will exhaust all other options." That's what scared her, what scared me was when we talked about how this grade 2 cerebral palsy came out of nowhere. How did this cp flare up like this? He has no clue, well, I MIGHT & I DON"T THINK IT'S CP! I decided to join labcorp & was looking at previous blood results when I stumbled across one taken 10 months ago that showed my A/G ratio, sodium, carbon dioxide, hematocrit, & blood urine nitrogen where all off. It could have something to do with my adrenals & kidneys. Spinal wise they found cervical disk denegation, stenosis, bone spurs all along that region. Then the ENT told me to get more imaging & I had to wait another week because insurance... We found there was a laryngocele & diverticulum. There was no cancer which was our initial concern, instead the Ent said it was rare & congenital.

2 reactions
Post

Appointments coming

#Doctors #appointments

Good morning everyone. How are you all doing today? I wanted to share that I'm seeing 3 doctors within a 3 week period. An ent in 2 days, a neurologist in a week & a spine doctor in 18 days. I'm becoming a little anxious about each of these appointments for a few good reasons. There's lots of pressure on me to say the right things & explain to them that my problem is real & is affecting my quality of life. Problem is the issue that is causing me digestive issues, swallowing issues/clicking throat, grip issues, posture abnormalities, gait disturbance/ wide based gait, tinnitus, tmj etc. I have proof of the digestive symptoms yes ew, but they may be critical in figuring out if I have an infection or not. The neurologist will need to figure out on top of all that if radiological findings are just porencephaly or something more sinister.

My guess for the first set of problems is an encephalitis of some kind. I've read about how infections can be dormant then occur suddenly after stress, excercise etc. Before we moved houses I got a pinched nerve in my neck that with correction unleashed its wrath on my poor body. I'm hoping the neurologist can piece together whats going on there. Bloodwork, urine etc have comeback normal so I don't know how we are going to detect something that is getting harder to find? The spine doctor will need to figure out why I have a posture lean. The ent will need to figure out if my swollen lymph node & nodule are benign or cancerous. There's alot we need to figure out & its kinda overwhelming. I hope all will be revealed soon. I'll keep you guys & gals updated as I learn more. Have a great day.

3 reactions 3 comments
Post

Welp #Doctors #Fibromyalgia #ChronicFatigue #ChronicPain

I don't have a PCP now til springtime or at the latest July 27th. I was tired of being treated like dirt. It's kinda far but this place was recommended by someone with Fibro/CFS who gets good treatment there so fingers crossed 🤞if something comes up it's the ER or Urgent Care basically again. Which sucks but if I get better treatment I really do not care.
Depression is honestly kicking my ass along with pain, it sucks. I booted my counselor as well for flat out ignoring my trigger. My Psychiatrists MA today was less then helpful. I just don't feel supported anymore and it sucks. I have my roommate who I adore but she admits she isn't good at the emotional comfort but dear God does she try and I'm so grateful. I just feel like a crappy friend because I don't feel like I do enough. She understands but it's just the brain gremlins.
#MajorDepression #Autism #Anxiety #Loneliness

11 reactions 2 comments
Post

Benzoyl substitutes for anxiety

I've been having some issues with the psychiatric medications I'm currently taking that were prescribed by my psychiatrist. For example, lorazepam (Ativan) helps a lot with my anxiety, however, it makes me feel sleepy which is problematic since being alert during the day is important (especially with full-time college coming up soon for me). Then with antipsychotics, I need to take them but they also either seem to just knock me out and/or cause major weight gain (which is also unhelpful minus with my insomnia, but it causes extreme daytime drowsiness and I've also struggled with an eating disorder on and off for the past 11 years, so that can just trigger me to relapse into unhealthy eating habits).

I would ask my psychiatrist personally but he's very quick during appointments and basically just prescribes a pill then sends me on my way.

Anyways, to go back to the lorazepam/ativan issue, I also worry a bit about the addictive quality of that medication due to my addictive personality & tendencies both in the past and present.

But I don't know of a better alternative and I'm tight on money so (since most psychiatric medications are free in Ontario), my best option financially speaking is to take prescription psychiatric medications, since I don't have to pay for them. I'm on ODSP (Ontario long-term disability), so finances are extremely tight/I'm in poverty (note: I'm not being dramatic here, that is a genuine fact and you can look it up yourself if you don't believe me).

Anyways, basically my question is, how can I determine which psychiatric medications I should take when my psychiatrist isn't thorough or even borderline malpractices (and doesn't even give me drug info when giving me new prescriptions), and there's very long waitlists to get a new psychiatrist? Should I just call a pharmacist and see what they'd recommend maybe or should I not because psychiatric medications aren't necessarily their specialty (since that's what psychiatrists specialize in)?

I don't know what to do and I feel like my doctors don't either.

#MentalHealth #treatment #Doctors
#Psychiatry #Psychiatrists #Psychmeds #medications #MentalIllness #comorbidity #ADHD #Insomnia #SideEffects #comorbid #Anxiety #Mania

18 reactions 19 comments
Post

14 years and no solution #ChronicPain

So I have 2 kids. They are 1 year and 3 weeks apart. Exactly. My eldest was my hardest delivery, my youngest was my hardest pregnancy.

During the delivery of my daughter my BP was rising very high. The doctors had me on petosin, and fluids and morphine that was supposed to help me sleep.
Oh that did not help.
So right at 7cm dilated, I was given an interthecal. The needle was in my back rubbing on my static nerve when my uterus decided to cramp so hard my back was in spasms, and the needle bent. I was in so much pain until that kicked in all the way.
Then after a horrible delivery, 3 days in the hospital, and so many "Oh so cutes" I was headed home when a new pain started.
Imagine a white hot pain, like a fuse to a firecracker, driving up your spine, through your neck, through your pelvic floor, down your legs, into your head, into your feet, and exploding like a firework.
That hit as I topped my stairs on my way into my apartment.
I had never experienced a pain so intense, child labor was great in comparison. I fell to my knees and screamed. I crawled into my apartment and laid on the couch crying until my mom had finished getting my daughter in her bassinet.
I kept saying I would be okay, but every movement was like fire igniting all over, from my static.
I was told it would go away over time. I was told the nerves are not bad, there is no "deep injury" visible on X-ray.
My doctor treated me like I was faking it for 5 years, talked bad about me to people she was treating ahead of me, called me a drug addict when there were zero "recreational" drugs in my system for multiple blood tests.
I was doctor shamed into hiding a pain for so long that I became accustomed to it.
Now it is just as painful, but I roll my eyes and breathe deep as the days and days of pain set in over my head, pelvis, back, neck, and chest.
I feel like screaming so much.
#ChronicPain #InvisibleIllness #Pain #Doctors

2 comments