u/G0ose0nTheL0ose

I do not like my newly met spine doctor. I recently had xrays and MRI to check on my worsening chronic neck pain that I've had since 2020. For the past 2 years, the pain is flaring up to a 8/10 for hours and I'm not able to turn my head very far at all.

No Chiari or instability was found, but they did find cervical spine C 3/4/5 all have mild Broad Based Disc Osteophyte Complexes with mild Spinal Canal Stenosis.

-Meaning mild, degenerative changes in those 3 intervertebral discs, occuring alongside the formation of bone spurs (osteophytes) at the edges of vertebrae and overall is potentially the cause of the spinal canal stenosis/narrowing.

I met with a spinal doctor for the first time to discuss these cervical spine findings (and also my spine xrays showing Kyphoscoliosis and an extra vertebra bone, L6)

He said my mild findings are from "normal aging" and did not seem to want to discuss anything with me or about my pain or limited head movement.

I was/am frustrated because he said its from "normal aging"...but I'm only 29 and have been symptomatic for 6 years. From what I've read is that this condition/ findings are common+mild "age related changes" around people aged 50 years old. Not late 20s year olds.

I feel like my doctor brushed me off. I asked him not to compare me to a healthly-normal-aging older adult. I have EDS and my issues are early for age. Plus, early disk degeneration runs in my family. With this condition usually showing up mild in people around age 50, My dads was already so severe by age 49 has had to have neck disks replacements.

Anyway, thanks for listening to me vent about it. Luckly this spinal ortho doctor is not active in my care and will only be on the team to re check my scoliosis curve every few years. Luckly I have a Pain Specialist and a physical therapist who will look after me and advocavte for me. They wont gas light me or tell me I'm normal via comparing me to a aging 50yo.

Does anyone else with hEDS have these atypical symptoms that are more often observed in other types of EDS? I feel kinda sidelined with my doctors being suprised that I have these symptoms and diagnosis while not having the currently known pathogenic varriant genes for other types of EDS.

I've been dx with hEDS since age 8. I have been Whole Genome sequenced and am negative for the *currently known* pathogenic gene variants of other rare EDS types. (Future research is likely to reveal hEDS genes and also reveal more pathogentic gene variants connected to other forms of EDS, and so my dx could change if other genes/variants are flagged.)

Atypical symptoms I have that occur in other types of EDS.

- Early onset Kyphoscoliosis (I have 3 types of curves and an extra vertebra bone)

-Genetically high risk for Ascending Aortic Dissection with a minor tear having already occurred.

-Mitral heart valve Regurgitation

-Multiple heart valve Stenosis

-Childhood/adult muscle Hypotonia (not identifiably caused by other illness)

(Absence of genetically identifiable Osteogenesis Imperfecta, Loeys-Dietz syndrome, Marfan syndrome, primary rheumatoid disorders or other disqualifying illness from hEDS criteria.) (On top of the atypical symptoms, I've got most of the typical symptoms of hEDS listed on the 2017 criteria and other chronic illnesses that are often co-occuring with hEDS.)

Strollers for kids are in fact mobility aids and I will think of them that way from now on. Mobility aids are used across all ages.

Strollers help children who :Cant walk more than short distances. :Cant walk as fast as people/adults with longer legs. :Children fatigue faster than adults, often needing to sit. :Children need naps /nap in strollers. :Help with muscle soreness/discomfort from trying to keep pace with able adults. :Help children be mobile for longer (stroller to the park saves energy for playing).....and I could think of more.

Thanks for coming to my Ted talk 🔴

Yesterday I had an MRI to explore history of seizure activity.

I see my neurologist second week of July for follow up. Below is a quote from the MRI report. My neurologist messaged me about the results and said we will talk at the follow up and to not worry right now. She also said I'll need another MRI in the future to track this MRI observation.

I'm NOT worrying, I promise. But I would like to know more about what this report quote means in laymans terms.

"5mm nonspecific T2 hyperintense lesion in the left thalamus, without mass effect. This could potentially reflect sequelae of seizure activity, although a low-grade glioma is in the differential diagnosis."

Does it mean theres something there- but we dont know what- can likely explain symptoms I'm having. But we cant rule out a low grade glioma right now.

Why is it that when we search online for what ME/CFS means the internet says Chronic Fatigue Syndrome? When it should be breaking down the roots words of Myalgic Encephalomyelitis.

My= Muscle, Algic=Pain, Encephalo=Brain, Myel=Spinalchord, Itis=Inflamation

Chalking up to ME being to do with: muscle, brain and spinalchord pain and inflamation. It should not be chopped down to just CFS.

I read up on the history of the term and how its changed over time and what Countries or W.H.O. have proposed what names. Its interesting but I'm glad its likely to revert back to ME not ME/CFS. Because people only think its "CFS"

I asked my rheumatologist why it is SO hard to find the term ME broken down into what it really means. He said CFS doesnt have to do with ME. That "CFS is just CFS and they dont call it ME anymore." He "doesnt know why it used to be called that". My reply to him was "its been called ME for more than decade(s) for a reason, it was named for a reason, if it was just CFS, it would just be CFS." (they didnt just make up the root words of ME for fun to make a really long name.) And I also told him that health science and ME advocates are working on dropping the CFS and just going back to plain ME because its being misunderstood as just CFS not ME.

People can have CFS diagnosis and not have ME*/CFS but ME shouldnt just mean CFS when its way more.

Snails need protien every 7 to 11 days. ✅️

I've read that people feed bloodworms, dehydrated mealworms (which are 25% fat) and chicken.

What about dehydrated duck heart? (19% fat , with No salt, additives or preservatives.)

My local pet store sells a variety of dehydrated meats/treats. The little duck hearts are a dollar, would last many feedings and they have decent vitamins and good protien. I figured they may be a good option for me to try with my juvenile growing snails.

Based on all that, it would be fine to try right?

What are some ways a doctor and team can do to make a loop recorder procedure appiontment go smoothly and as little pain as possible for a teen with autism. Beyond coming prepared with comfy clothes and sensory tools.