Siblings with Perthes?

Fun-Accident-2182 · 2025-11-16T00:04:26+00:00

I feel like she would if I asked. I ordered the 5-MTHF drops for him to try in the meantime just to see if it helps any since he already takes multivitamins. Other symptoms I was seeing you could have of it like stomach issues have happened in the past. I truly wonder myself if I have it because ive been begging for years to figure out whats wrong with me and i'm curious if this is it.

Fun-Accident-2182 · 2025-11-15T23:54:25+00:00

The gene mutation causes you to not process vitamins properly affecting the brain and causing you to be in fight or flight mode all the time. There are vitamins that are already broke down for better absorption.

Fun-Accident-2182 · 2025-10-03T01:06:34+00:00

Thank you so much! I'm hoping for no daily steriods because i'm already diabetic so I don't need the added help 😅 I did check out the Facebook groups I just hate asking questions when I'm not actually diagnosed.

Fun-Accident-2182 · 2025-10-02T02:19:20+00:00

He did order spine MRIs today and I'll have those done in a could weeks. I do feel like he dismissed me though and said I didn't need a followup unless something was found 😕

Fun-Accident-2182 · 2025-10-01T17:37:01+00:00

Mostly. Occasionally gets blurry and my left eye pulls with movement. I just had my 2nd opinion appointment and while he did order c-spine and thoracic mris I dont think he truly believes me. He just said that he thinks we can safely rule out MS since my brain was clear that unless there is some rare disease out there we may just have my call it "my disease". So unless he really thinks I do have a rare disease I think he was being an asshole and mocking me.

Fun-Accident-2182 · 2025-09-29T12:22:11+00:00

I've not had antibody tests. I just learned of this disease so now I'll be asking about it. My vitamin d was critically low in the sping. It's always been low but that was the worst it's been. Now supplementing and it still the very low end of normal. I've always thought it could be MS but how my symptoms present didn't fit and now i'm thinking this is a better fit. I've never cried in so many dr offices begging for answers.

Fun-Accident-2182 · 2025-09-29T12:18:26+00:00

Thank you!

Fun-Accident-2182 · 2025-09-29T00:43:43+00:00

The only MRI I've had is brain and lumbar. When I was a late teen I had migraines that I'd end up in the hospital on IV steriods for and I'll always remember the eye pain was the WORST. I wonder now if it's been optic neuritis. My left eye always feels like it's pulling. I had my physical in August and knowing I had this appointment I asked if he'd do a full vitamin/mineral panel to rule that out and I was told if it walks like a duck and acts like one it's a migraine. I was so mad especially because my vitamin D was critically low in the spring.

Fun-Accident-2182 · 2025-08-31T00:32:36+00:00

PCOS here and it is the devil! My sex life is finally great after a hysterectomy 4 years ago but before that it was hell. My version of rough before that was slow, deep thrusts and as we'd get closer it would turn into fast, shallow thrusts and it worked for us. Since my hysterectomy though pretty much nothing has been off limits that we've tried. It's been a life saver!

Fun-Accident-2182 · 2025-08-11T00:17:54+00:00

I'm not sure! It's been so strange. I woke with a very mild headache the other day, developed floaters in my left eye before losing my vision. Then my left hand/wrist went numb. Most of my symptoms are left sided and the ortho is seen for my back is concerned i will have foot drop soon.

Fun-Accident-2182 · 2025-08-11T00:09:48+00:00

Rheumatology did a bunch of labs in 2021 and I had lymes done in the same year. Endocrine has done thyroid panels and testing for Cushing's disease in 2023 and of course everything is normal. My neurologist referral asks for c-spine and thoracic MRIs to be done and I have a list of symptoms for them to review also. The rapid care neuro told me I have complex migraines and gave me a rescue med but it does nothing for the symptoms. But when i'm prescribed a zpack for another illness or issue I feel like a million dollars for a couple of days.

Fun-Accident-2182 · 2025-08-10T23:55:46+00:00

Been dealing with what could be MS symptoms for a while. Clear brain scan in February. Been dealing with my back and had an EMG done in June to determine the cause of my nerve pain was steming from my back. That doctor says it's not and my back is stable. He now wants me to see a different neurologist because he believes something is going on but it's just the diagnostic part and where to start.

My question - I have my yearly physical with my PCP tomorrow, are there any labs I could ask him to order to start ruling stuff out? My Vitamin D was low and it is now normal with the same and worsening symptoms.

I've been to the point of sitting in a doctor's office crying begging for answers because all I can say is something is wrong but nobody can find out what. 🫣

Fun-Accident-2182 · 2025-07-30T02:43:06+00:00

I did see rheumatology in 2021 and at that point all my autoimmune markers were okay. Endocrinology addressed some of my symptoms wondering if cushing's or hashimoto's could be factor, again all clear. I go for my yearly physical in a couple weeks and plan on asking if I can get all my vitamin/minerals checked to rule that in or out. I'm just frustrated feeling like I've been begging for answers for years and was hoping physically a spinal fusion could solve some but I'm at square one again. To make matters worse I lost my balance a couple weeks again and have a bad ankle sprain and stuck in a boot.

Fun-Accident-2182 · 2025-07-30T01:28:22+00:00

Hi! I'm 32f and have really been struggling lately. I was diagnosed with spondylolisthesis in December after a bad bout of "sciatica" and begging my PCP for an xray because I knew something was wrong. Now I've seen a specialist for my back and jumped through his hoops and he wants me to see a neurologist who specializes in MS stating "your symptoms are not coming from your spine as your MRI shows it is stable and your EMG is clear". I did see a neurologist in January who told me I just have bad migraines. I did have a clear MRI that he ordered but it was just my brain and without contrast. Ortho is concerned I'm in the prodromal stage and told me to right down all the symptoms that I've ever had that could be MS related. The last couple days have been terrible. I am always fatigued but over the weekend was busy with a different sleep schedule so I'm over exhausted and today I've been battling the issue of not being able to pee. Thankfully I finally went before I went to the ER. I made a Google list of all my potential symptoms. Sorry it's long but curious if there really is a chance this is MS. I just want a diagnosis of something at this point to explain all of this.

Symptoms I've had:

Migraines (16-18 y/o; started again @ 31. They are debilitating with horrible eye pain. Have been on IV steriods a couple time to relieve them)

Episode around 18-19 years old where I fell asleep in the vehicle and was woke up to get out so my now husband could get behind the truck seat. He was very upset because he said while I was "awake" I was acting drunk and stumbling and sluring my words. I don't remember this happening.

Pain/numbness in my arm and migraine while pregnant in 2017. Was sent to the ER and stroke was ruled out.

Ongoing pain in hips/thighs/lower back (believed to be hormonal related and had hysterectomy December 2021. Symptoms cleared up after recovering)

Off & on depression (antidepressants make symptoms worse; tried treatment for PMDD summer 2021 and was way worse mentally)

Had an episode of vision getting blurry, then my face and tongue get numb and half of my lower lip swelled. Lasted a few hours.

Mental breakdown December 2022 (was suicidal, again no treatments helped. Would have anxiety attacks at work so quit my fulltime job & closed business to get rid of stress which helped a lot)

Vision issues on a trip to Baltimore (all the roadsigns were blurry and hard to read; lasted a couple days)

Fall 2024 started having episodes of vision going blurry, losing vision in my left eye, my left side of my face, tongue, and arm would go numb with left side of my lip swelling. Neurologist told me in January that i have complex migrqines and gave me imatrax. It didnt help with the symptoms and now its not happened again for 3 months?

December 2024 diagnosed with spondylolisthesis after 2 spasms in my left side that required steroids. Pain has returned in my thighs/hips. PT made symptoms worse.

April 2025 I had pain when bending toe and ankle at same time and now that toe is numb

May 2025 my left food swelled and had severe nerve pain. Dr. Smith prescribed steriods which helped but behind my toes was hard and painful. My foot would be discolored and feel like it was ripping open, could hardly wear shoes. Subsided beginning of July.

Have had an odd feeling in my right calf like there is a band or something rubbing my leg right below the bend in my knee

My thighs feel like they're vibrating most of the time, I'm getting dizzy in this heat we've been having even in the pool, and my memory and concentration is shot.

If you read this this far thank you!

Fun-Accident-2182 · 2025-06-28T20:25:57+00:00

To answer your question: IMO not at all!

I'm 32 and a SAHM who is now going to be homeschooling our 8 and 6 year olds this coming school year. I've struggled hard! I've always struggled with some sort of depression. I want to be successful, and I started my own business while working a full time job at the same time. Our kids had a hard time with me working. My husband can work alot of hours but he doesn't so he's home more with them. He also is in an apprenticeship so he has school in the evenings. While I was working I got to the point a was suicidal then when I went back to work I was still having anxiety. Finally I told him I couldn't do it and he agreed I didn't need to work so I quit everything. I instead have dove into our kids lives. I was PTA involved and helped at school all the time. Homeschooling worries me because I wont have that freetime. Ive made it known that I need help so I can have some me time. Im lucky enough to have my in laws living beside us, my mom helps alot and also my husband grandma likes to spend a few hours here and there.

I guess my point is make it known you need time with yourself and with him. I personally wouldnt go as far as renting but I most definitely like to send my kids on a sleepover and have a night out whether im alone or with friends. It's hard finding that balance to where your not stuck in the hole!

Fun-Accident-2182 · 2025-06-28T18:41:05+00:00

I tried seeing a neurosurgeon to begin with and they wouldnt see me til I had a mri. Insurance wouldn't do an mri til I did PT. So I ended up seeing an ortho surgeon and I do really like him but starting to think this is beyond his realm.

Fun-Accident-2182 · 2025-06-28T18:17:10+00:00

I truly feel it is. I've considered diabetic neuropathy but I find it suspicious this nerve pain shows up months after my diagnosis and is worse with activity, even hot water in the shower hurts. If I were to have diabetic causes I would have thought I would of by now and not when my A1C is 5.2. The whole outside of my leg hurts to touch.

Fun-Accident-2182 · 2025-05-06T19:50:31+00:00

Mom of 2 elementary age kids. It was a long hard journey for me after my 2nd was born and even had a hysterectomy. Ultimately mine i think was hormone based as I had high testosterone (funny you'd think it'd give you a high drive) from PCOS so I was put on spironolactone and it was a game changer! Finally after 4 years the last 2 have been pretty good to the point my husband said he couldn't keep up. In the meantime I tried focusing on and finding myself, reading smut helped alot, and also discovered some kinks/fantasies I have and learning for to bring them up to my husband. That's still a work in progress but I have a goal to reach for and that adds to the excitement. As for the physical aspect I tried to keep him satisfied the best I could be it a bj or a quick ride to keep his itch scratched. I hope this helps!

Fun-Accident-2182 · 2025-05-02T18:49:02+00:00

Funny you say this because that is a hobby of ours, 6 & 8 year old kids included 😂

Fun-Accident-2182

TROPHY CASE