#Lost in the diagnosis process

1 messages · Page 2 of 1

waxen pine
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I decided to stay home indeed

Thank you so much 🧡 I think this is what they're doing indeed but it's really associated to fail in my brain, even if I know it's not. I have one November but I don't think she'll continue to follow me after that because she's specialised in MS and I don't have it

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That's exactly what I was thinking XD I was thinking about moving like that today rather than walking but I'm in shorts so might have to change before haha! Didn't try it but thought about doing it on a blanket, maybe it slides more?
Great ✨

tulip owl
tulip owl
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I also really have to go see my gp to ask for a paper which would make the psychologist and psychiatrist appointment free for me... because the price is really killing my bank account 😭 and as I don’t work... I can't earn money...
I hope he will be okay because he is really awfull....

Maybe it can also make the neurologist free... not sure

waxen pine
waxen pine
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I quickly checked on the website santé psy étudiant and I think you can

tulip owl
# waxen pine Can't you see a psychologist for free without a doctor's referral now when you'r...

There were none available.... and no psychiatrist so I went through a program but everytime it's 50€ of psychologist and 70€ of psychiatrist.... and I still have my real psychologist because I have to have one specialised in asd, adhd etc...

I tried through students thing but none. And the program which pay for 12 appointment is only for some psychologist... and they are often not specialised in the things I need...

tulip owl
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I found good people but it's expensive

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So I will try to have an ALD some people with asd told me to ask for one

tulip owl
waxen pine
waxen pine
waxen pine
tulip owl
tulip owl
waxen pine
tulip owl
waxen pine
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Pffff

tulip owl
tulip owl
# waxen pine Pffff

My psychologist is still less expensive but it will be hard I think 😅

And in june neurologist... so even more money. And my mom want me to go to another neurologist to see so another payment...

I have the impression that it never ends.... and people still ask why disabled people sometimes receive money...

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Speaking of this I will try to ask for something in my next mdph papers because I can't really work or not enough to pay all of that and it would be good if I could have help. I am already spending my whole scolarship on appointment...

waxen pine
waxen pine
tulip owl
# waxen pine You don't have reimbursement for your neurologist and psychiatrist?

Neurologist I'm not sure... I will have to check. But the last time he sent me do a ||blood test|| which I had to pay more than 100€ from pocket because not took by insurance..

And psychiatrist isn't taken anymore... I am allowed to have 200€ of psychiatrist + psychologist per year... and at 120€ everytime I go the program... it's now over 🥲

waxen pine
tulip owl
# waxen pine What the heck 100€ for a blood test?? It's really strange you don't touche anyt...

Yeah 166€ 🤯 I think my mutuelle gave me back a bit fortunatly but I was like 🤯 when I saw it.

Don't know 🥲 everytime I don’t have any feuille de soin to send to the secu just something for the mutuelle but now they don’t pay for anything anymore🥲 but next time I will ask maybe they just forget 😅

And I checked and I think I don’t fit the criterias for financial aid by the mdph 🥲

waxen pine
tulip owl
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It's by doctolib in video... so maybe I don’t know I really have to ask the next time because 0 info

waxen pine
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I see my psychiatrist in video too but I think my parents are given money back 🤔 (I'm still on their account). But I saw her in person some times which allowed her to have my carte vitale infos

tulip owl
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Ohhh
Yeah I really really have to ask next time 😅

waxen pine
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Yeah I hope they will have an answer and you will have reimbursement because it's expensive Sadfrog

tulip owl
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Yeah 😭🤞

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Because I am also scared of which exam the neurologist may ask for😅

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Because the 166€ ||blood work|| was a shock😅😂

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But as I already did the cerebral mri and an emg I think I did all the things needed🤞

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Croos finger it will be enough to diagnosed me🤞

waxen pine
restive walrus
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Tbf I'm going to a different cardiologist than last time
But I also have doctors that requite a referral from my gp every time I go there even if I've been a regular patient for 2 years so idk

tulip owl
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That's crazy 🤯

restive walrus
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It's usually not much of an issue bc I don't always need an appointment with my gp to get a referral. I can call and they'll tell the doctor to sign it and then I can either pick it up or sometimes they can send it to the other doctor

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But reading you guys' recent messages, I'm really glad most of my appointments are covered by insurance without any extra admin

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I'd only have to pay for specialized doctors that don't have a insurance registration. So in case I want/need to get evaluated for EDS, I'd have to pay that out of pocket. Or if my new neurologist also ends up being unhelpful, there is a doctor who specializes in fatigue related conditions I think who also doesn't take insurance.

tulip owl
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With doctors it's normaly that for me too. Just psychiatrist and psychologist are in their own box 🥲

tulip owl
restive walrus
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It sucks that especially if you need specialized care it immediately gets more expensive

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Or, not even all specialized care

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Bc if I had MS for example, I could get diagnosed by doctors registered with insurance. But if I have EDS or ME/CFS, I can't and have to pay out of pocket?? What kind of weird system is this.

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And I get the issue with psychology and psychiatrists too, sort of. Bc my current psychiatrist also doesn't know enough about ADHD meds so it's kind of a hassle and I have to do all the work and research and explaining, which is supposed to be his work?! And if I want to properly try which meds work best for me, I'd have to go to a specialized clinic but they all have wait lists that are like 3 years or something or they closed their wait list completely. So realistically, paying for a non-insurance psychiatrist is kind of the only option, too.

tulip owl
tulip owl
restive walrus
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It's so weird too bc ADHD is so common, you'd think more people who studied psychology would know how to work with it

tulip owl
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Yeah 🥲

waxen pine
waxen pine
waxen pine
restive walrus
waxen pine
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Ranting about life with chronic illness
||I don't understand, I felt so much better last week and this one I feel so miserable, I've only been able to work 5 hours and had to skip 2.5 days. And I know maybe why I feel like that, it's because I hung out in the city center with friends Saturday, but I can't understand why that little of an effort makes me so exhausted and sick afterward. I mean it's likely PEM and I know how it works but why does it have to be like that?? I can't even do the things I like when I feel good... And all my body hurts, it burns everywhere, even eating and being sitted was so hard. And my friends are kind but they don't really understand and I can see they feel powerless and don't know what to do or say. And my best friend isn't even there because I decided to cut things off because she's never here for me and doesn't understand (and doesn't even try to) that I'm disabled and ill, but it makes me sad and I feel so lonely. I want her to hug me and be there to help me pass the time when I'm bed bound. I'm so sad and exhausted||

tulip owl
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Kinda vent that I put here because it follows something I did talk about here some times ago

||Confused and upset again I am....

Some month ago I talked here about the fact that my mom said that sometimes I was horrible etc... at some point after I tried to explain my pov about meal time and how overwhelming it was for me (and sometimes make me close to meltdown) and I explained the fact that sometimes I have to control myself to not scream at them and go insane. And my mom told me at this moment an answer kinda harsh and told me that they won't stop eating because of me. And I explained that it wasn't what I was saying but it did nothing....

So we return to present time. I changed places at the table. First to stop having bugs falling on me (yeah for an unknown reason bugs were always falling on me when I was there but never on my parents). So I switch places with my dad. And it so much better I am way less overwhelmed by their noise and by beeing in the middle etc... etc... so I am very happy to be at this place.

But my dad wants to switch again.... I explained that it was so much better for me here but he wasn't okay with it. He told me to wear all my earplugs etc... (which is uncomfortable while eating as logical it is)
I said that this places removed my pulsion to scream at them etc... and he told me that he would prefer me to scream at them and to get his places back.
I refered to what my mom said to me when I mentionned my feeling of screaming at them and her general reaction.

Nobody talked after that...

And I am so confused and upset.

I have this place for months now and I feel so much better. And maybe my father finally started to feel a bit of what I felt and then want to change back but I really don’t want. It was so awfull I was so often close to meltdown or in internal meltdown because of this. It was awfull.

And yeah my dad upset me because of that. I lived this for years and it was awfull and he wants me to get back to it...||

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||tbh if he forces me to re switch I will take another place again. I won't be able to see the tv, he will be alone in the part of the table but I will never return to my former place no no no. It was absolutly awfull

I don’t know what to do because my dad seemed to not understand my pov.
Or maybe he started to feel how awfull it was but don’t understand that I feel it like ×10.

And the fact that he told me to give him his place back and scream at them (and so having a meltdown) make me feel so bad. And so angry and upset to him...||

tulip owl
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I just walked to the mail box and did the dishes.... it was a bad idea... I am feeling so unwell. I was trying to breath calmly when I was doing the dishes but it was so hard 😭 and I am in so much pain now 😭😭

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Everytime my mom asks me to do the dishes it ends up like that😭😭

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I was also trying to explain to her how hard it was to shower. Because every morning I have to have like a fight against myself to take my shower. As much mentaly then physicaly it's so hard and painfull.

So I was saying to her that it would be so much better to not have to shower everyday. And she told me "so you are being all dirty" (hard translation so for the french speakers "donc tu es qu'une crado en fait")

And I was like no for exemple old people do like in the old time and shower once a week but clean themselves differently the rest of the time. And she said "yes... the old people"

But I think I will really try something. I have to use a special shampoo 3 times a week. So I think the mondays wednesday and saturdays I will take a shower. And the other days I will wash myself with an wet cloath and dry shampoo...

I don’t know I think it might be easier and less exhausting mentaly and physicaly for me...

Does anyone have an opinion or tips about that ?

limpid forge
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i dont shower every day, and i know many people who do the same. in fact, i cant name anyone in my life who showers every day

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maybe in your family/culture(?) its normal to shower everyday but this isnt true for everyone!

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also i really doubt that youll need to put dry shampoo in your hair if you are washing it every second day

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i know it differs depending on the person, but for example i wash my hair every 4 days

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if your shower is big enough i would suggest getting a shower chair!

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also a chair for the kitchen so that you can do the dishes sitting down?

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i know you can be scared to disagree with your parents, but honestly your mother cant force you to shower. so if you want to stop showering every day, you should do that!

tulip owl
# limpid forge maybe in your family/culture(?) its normal to shower everyday but this isnt true...

Yeah maybe it's just my culture because everone I know except my grand mother shower everyday...

But indeed I will stop doing that it will maybe save me energy to use the wet cloath.
Because I already have a showet chair..😭

I will try to wash my hair every 2 days. But often my mom tell me that I have to wash my hair because it's dirty etc..😅 I will see how it went.

Yeah I should really try to live my life in the best way for me and not for the others... I will try.

And for the dishes I tried with a chair but my kitchen is weirdly made and it's really hard to do it while sitting down.
I will try to find a way to make me "taller while sitting down" maybe it will be better

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But thanks a lot 😭

limpid forge
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you could get a high stool

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with 1 leg instead of 4

tulip owl
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Ohhhh indeed I will try to look at that ?

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Btw how are you doing ?

limpid forge
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im okay!

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i baked cookies today and also cooked a nice dinner

tulip owl
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Nice 😃😋

restive walrus
tulip owl
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I see thanks I will really try to do that and don’t listen to other people who might make comment.

Because I did it today and it was so good. I have even been able to moisturize my body which I can't normaly do. I found a way to even sat while cleaning me in the tub so even better.

I will do tests today I didn’t washed my hair but I also didn’t get out. So I think I won't use dry shampoo or just if I go out and that it looks dirty (to note I already have the dry shampoo so I don't have to buy it just for that)

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Thanks to you two really you really reasure me about that.

It's crazy how cultures change things. I wouldn't have wonder so much if showering everyday wasn't something TO DO in my culture...

tulip owl
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Tomorrow appointment to ask my gp for ALD (in my case something that would make psychiatrist completly free and can help to have some meds where I should have to pay a bit completly free too)

So cross fingers my gp will be in a good mood for once.

I will go with my crutches so I hope he won't be too mean about it... but it's a good thing that he sees me with them because in august I have to re do my disability paperworks and he will have to fill up a medical things and I would like him to add things links to this undiagnosed thing and not just autism (which he didn’t do completly well the last time...)

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🤞🤞

tulip owl
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I did a joke about medical things to my mom and she didn’t get it and started to get mad at me.... even if when I explained, so I just told her to forget that she didn’t understand....

tulip owl
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I am reading a book about fnd with stories from people who has it but also professionnal who work with it and it's so interesting. I am reading on my kindle and already highlight so much things.

At some point there is a poem I think I will try to copy it to share it on the server because it's really interesting.

And the professionnal in it seems so nice😭
Like they know so much things and are friendly etc... even highlight how a lot of professionnal can work with fnd very badly.

I would like so much professionnal like that. I really hope that my neurologist is good... I saw him once and he was really nice but I can't tell how he really is with just an appointment. But I hope that he continue to formed himself even after having stop his studies so he could know things like that etc...

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The appointment is so close and so far at the same time I can't wait to have an answer 😭😆

restive walrus
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Well, I could already call the other specialist I'll have to pay out of pocket anyway, and get an appointment with her (with 6 months wait time...)

tulip owl
tulip owl
tulip owl
# tulip owl Tomorrow appointment to ask my gp for ALD (in my case something that would make ...

It went bad but like bad bad bad.... leading to a meltdown. I won't vent too much here but basicly asd isn't autism so I can't.... and he used the r word once... and yeah he just talk as if he didn’t open a book about autism since 1820...

So yeah twice in a row that I leave the office in tears and this time with a meltdown so I will clearly look for another gp because I don’t trust him anymore and even less to talk about things like my neurological issues...

restive walrus
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Wdym asd isn't autism? /rh
It's literally in the name wth
What did he think the a stands for? /rh

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So sorry you had to go through that, that sucks immensely

tulip owl
tulip owl
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So yeah clearly a reason to find another one I think...

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Because he would have to filled up the paper for the disability governmental thing again in august... and he already did it good the last time but with adding my neurological issues no no no I won't trust him to describe any of my issues to the government

restive walrus
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Good luck! I hope you can find a better gp in time for August 🤞🏻🍀

tulip owl
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Thanks🤞

limpid forge
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ugh i relaly hope you can find a better gp

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this guy sounds like he really really shouldnt be a doctor

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i will never understand the people who go into jobs like this and just ||gaslight|| women (and those impacted by misogyny) about their health

tulip owl
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I went on a walk.... now I use my desk chair to move in my house while I was good before.

I also had the impression that I was about to faint, I was ||nauseous|| and saw blurry....

Now I feel better on that but struggle to talk. I stutter or it takes too much energy... like I can but it's hard. And it doesn’t really feel like a verbal shutdown so it must be links to the other things...

So I am using an app of my phone fortunatly my parents (mom at least) seems okay with me using it to talk right now😃

tulip owl
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I had planned on starting my cross stiching project today... but because of this before I decided to only choose the colors of my threads

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But I can now talk again

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It has lasted a bit over an hour I think. After the weird "crisis" where I had all the fainting sensation etc... I only choosed the threads and then just watched youtube and read bit

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I think doing "nothing" helped me to recover quicker. I really have to try to do that everytime

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But maybe this little walk as really shown to my mom how bad my symptoms can get when I do too much.

Because before the walk I was in a good phase.

Maybe it will really help with her understanding that I need a wheelchair for big trips etc...

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I will maybe go in july in a big convention in paris with my parents. They both really want to go and I want to go too but I am scared because it's huge and there are no wheelchair to borrow or rent their... so I would have to do everything on crutches 😭😭
We didn’t take the tickets yet but I am a bit scared. As we will almost for sure go by train I don’t think my parents would agree with me taking the wheelchair...

While the last time we went to paris I couldn’t walk because of how much I had to do 😭

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I just look it up we can go by train in a wheelchair for as much trains/subways/buses than "normal" just 20min more and a 10min walk.

So yeah it then still possible like this.

As it's in july I may already have a diagnosis so my parents would maybe agree to me going in a wheelchair

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Because I am really thinking that I won't enjoy it at all if I just go with my crutches

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Like not at all. With the people and le trying to walk and not fall yeah... no

And it's huge I really won't enjoy it if I go with my crutches only🥲

restive walrus
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I hope you'll be able to take the wheelchair

tulip owl
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Thanks😃 the possibility is bigger my parents decided to go by car ! So even easier.

We will take the tickets tomorrow apparently.
I will wait a bit maybe after the neurologist appointment and I will try to like put the wheelchair in the conv etc..😅
I will see cross fingers 🤞
And my grand mother found the cushion which she bought for the chair somewhere in her house so tomorrow she will give me it😃

tulip owl
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She forgot the cushion but indeed told me that she found it 😁 so next week✨️

tulip owl
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Got a psychologist appointment. She told me that indeed the wheelchair become more and more needed for me when outside etc...

Now I have to find a way to talk about it with my parents because I 100% agree and having this other person telling me it would maybe help...

tulip owl
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I talked with my parents and they agreed !
The only issue is still the size of my current chair. If it was smaller my mom would be 100% okay. So she is okay with getting a new one etc😆
My dad is still in the "the neurologist will give you a med and you won't need it" but I am happy 😆😆

I am looking at all the things to do to have a wheelchair in my country because since 2025 you can have them "for free" with a prescription.

My mom told me to ask for a wheelchair prescription to my neurologist in june. It's going well I think now just need to wait for the appointment 😆

tulip owl
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Just... this time my mom was "you will get deconditionned, I said no I would still walk at home and when I can etc..."

But she was meh with me going grocery shopping with her with a wheelchair and not my crutches... I explained that I was like undergoing the trip in those moment but she still want me to walk for this and going in car if I need. So yeah I just didn’t got on that😅

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But it's moving so nice

slender bluff
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I go on every school trip in a wheelchair, and on this last one in Italy I went half on foot and half in a wheelchair. This part when I was walking was OK at first, but the longer I walked, the more my legs hurt and got heavier. On the second half of the trip when I got in the stroller, I finally felt free, I could go wherever I wanted and drive as much as I wanted without worrying about whether my legs could do it or not.
The next day, on this Friday, I got muscle soreness from walking, but I'm still happy.

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I'm glad I can walk, run, jump, feel the freedom when I'm not in a wheelchair, but I also love the freedom when I get in a wheelchair (on school excursions) and don't have to worry about whether I'll be able to do something or not.
I'm happy for you too that you'll finally get a wheelchair.

tulip owl
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Thanks✨️😃

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You only use it on school excursion not on long trips with your family ? /genq /curious /nfta

tulip owl
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Ugh I had a weird feeling again.

I was feeling very very ||nauseous|| once again out of nowhere, felt once again as if I was really really close to faint, and my whole body was heavy and yeah just felt like complete ||shit||.
And I was laying on my bed on my phone and a some point I stopped watching it because of an ad and my eyes went up I saw completly blurry, felt really weird, I was still there but I was feeling that my eyes were like shaking a bit and that I was seeing kinda more and more blurry. Then my top eyelids (and eyelids in general) also started to move weirdly and at the end my left eye was like almost close while the right one was still more open. And when it ended I was like wtf and now I still feels weird but way less nauseous etc.. that before it happens. Now I "just" feels weak and weird in a way I can't really describe...

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I will try to stay on my bed a bit more before starting to clean my room like I wanted...

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With my symptoms I often have weird moments where my vision goes blurry out of nowhere and my eyes go up etc... but I don’t know this one felt more intense

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And the fact that after it the other symptoms kinda lessen feels weird😅

waxen pine
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It does look a bit weird indeed, a probably scary too 🫂

tulip owl
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Yeah a bit.... because I don’t really know what it was... and in general the almost faiting etc... feeling is not great and feels already scary 😅🫂

waxen pine
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Yeah I can imagine... I don't know much at all about this but could it be seizures (really not sure) ? I think you should mention this when you see a doctor

tulip owl
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I don’t know either... it's what scares me a bit too, because I know some things about it but not that much... but yeah I would defenetly bring it to my neurologist.

I am boycotting my gp /hj 😅

tulip owl
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If anyone has a knowledge about it I would be gald to hear it. Or maybe I should ask in another channel I don’t know😅😂

waxen pine
waxen pine
tulip owl
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In which chat should I do it ?🤔
Chronic illness ?

waxen pine
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Yes, or in the fnd section maybe? Both would fit ig
Edit : didn't see you already posted it xD

tulip owl
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I am scared of spamming so I think I will make a link 🤔

But thanks😃✨️

limpid forge
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i too seem to have developed this ||tic||

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😭

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im hoping it goes away soon :(

tulip owl
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😭🤞

slender bluff
tulip owl
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That nice that you can now have more rare bad days😃

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Will it continue to become better as you will ger older? /genq /curious/nfta

slender bluff
slender bluff
tulip owl
# slender bluff

Ohhhhh I forgot that in english a scooter was that😂

I was thinking of something like a kinda motocycle or those four wheels things that they are sometimes at supermarket in videos about the USA😅😂

Yeah indeed conveniant to put in a car😅😂

tulip owl
slender bluff
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It is okay 😆

slender bluff
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Thanks

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Hope you will be better soon, even a little bit

tulip owl
tulip owl
slender bluff
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No problem

tulip owl
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I am exhausted... I tried to do a bit of weight lifting before noon and a bit after the fainting feeling (||nauseous etc...|| came back and when I was eating lunch I was just feeling awfull and I was kinda zoning out... fixing a point and just staring.... with my vision going blurry sometimes and this over and over again. But I was still there I was "just" feeling very low, bad... and yeah like ||shit||....

And now I am just completly exhausted I have to do the dishes but I just want to sleep while I did sleep "well" tonight and I don’t really want to sleep the whole day... and I have to do the dishes 😭😭

If it was just up to me I would be sleeping or something close to it right now...😭

cyan sapphire
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I’ve been waiting for the doctor to call back for over two months now. They probably won’t. I don’t want to meet them really anymore but it’s just so frustrating that they’re allowed to treat patients like this uhh

tulip owl
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Are you able to contact them again to now what is happening ? Or find a doctor with the same speciality if you don’t want to see them anymore ?

cyan sapphire
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I’ve been trying to contact them again but they’re ignoring me.

tulip owl
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😮‍💨

cyan sapphire
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Yeahhh

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Thanks though

restive walrus
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I talked to my gp about the diagnostic clinic today and he said he'll give me a referral. (Only reason he didn't give me one right away was bc we weren't sure if I have to apply for my insurance to cover it first so we didn't know how long the process would take. But I called my insurance right after and they said they'd pay without an application/request anyway bc the clinic is covered under my normal insurance)

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He also said he could give me a referral for hand therapy if I bring my HSD diagnosis to our next appointment. Which is good bc my hand and wrist and arm have been acting up again lately. And I need to probably do more things with my hands this semester like writing essays and doing an art project for uni. So I hope maybe the hand therapist has ideas. They also offer an orthotics and aid consultation.

restive walrus
# restive walrus I talked to my gp about the diagnostic clinic today and he said he'll give me a ...

Anyways, the clinic said the process is I send them a referral and my doctors reports and diagnostic findings so far, so they know which specialists might need to get involved. Then they get an okay from my insurance and get back to me to make an appointment. They didn't know how long wait times will be bc it depends on what kinds of specialists might need to be involved as they all have different wait times. But it's sounds like a relatively quick process.

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So next step is I have to get back to my gp and get the referral(s) and make sure I have all my medical reports ready to send to the clinic

tulip owl
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A lot of appointment but good things on the other side 😃😁✨️✨️

It's moving ✨️

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I'm really happy for you😁

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Cross fingers the waiting list won't be too long🤞

restive walrus
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Yesss I'm a bit worried it's gonna be a lot with all the medical stuff and uni (although I deliberately took only one class this semester so it should be okay, and I can postpone the other exams and essays to next semester if I have to)
But I'm also exited that it's finally moving and I might get answers to a lot of questions this year (I also have a chance to get an appointment for an autism assessment at the end of the year too and maybe one for a proper HSD & EDS evaluation too if the clinic ends up not having a specialist for that)

waxen pine
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That's so great I'm happy for you! Hope it will help without being too much

restive walrus
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Thanks, I hope so too

restive walrus
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I called my gp office and I can pick both of my referrals up tomorrow or on Tuesday

tulip owl
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✨️🎉

waxen pine
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I had my first physio appointment today. He was quite nice I think. The only thing I was a bit upset about is that he told me it is important to continue going to yoga even if I don't have the energy. But I think any physio would say that as I didn't say how fatigued I am so it's ok I think. I told him I feared going too far during our future sessions and increase my fatigue and he told me we would go gentle

tulip owl
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I hope he will continue to really listen to you🤞

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It's quite upseting since yesterday evening I have like muscle spasm/twich around my right knee and even after sleeping it didn’t stop.
It not painfull or anything just quite uncomfortable.
Does anyone has an idea of what I could do to make it stop ?

safe oar
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Hmmm I have no idea whether it can actually help but applying some pressure ? The proprioceptive input can help me in some cases I think, but I haven't experienced exactly what's happening to you

tulip owl
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I can always try thanks 😁✨️

tulip owl
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My mom told me to not hope yo have a diagnosis during my next neurologist appointment in june... because she thinks it will still take a year for him to find what I have....

I already did MRI, EMG, ||blood test|| I don’t know what he would want to do next that would take a year... but she is maybe right... in few days it will be 1year that everything started I just don't want more waiting time....

If the neurologist can already prescribe me things that can help like mobility aid that would be great...but having an answer too.... why would it take another year...

restive walrus
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So I found out my weird ECG might be connected to either HOCM (which my grandma and my dad have been diagnosed with so I have a 50/50 chance of also having it) or mitral valve prolapse (which is common in hEDS). I mean, I was already researching these things since the ECG my gp made last year and since my dad got diagnosed and me also wondering if I have hEDS, but I somehow never found info on how these conditions can look on ECG (only found info on how they are diagnosed with echography)
Well, I finally found that info and they both match my ECGs.

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Now I'm double glad that I decided to switch to a different cardiologist for my next checkup bc the one I went to last year said she didn't think I have anything. But I also felt like she just gave me a general checkup and didn't really look for the specific things I was already wanting to get checked for or for a reason that could explain the way my ECG looked. And back then I didn't know they were likely connected so I couldn't really push the conversation into that direction. But now I have an appointment with my dad's cardiologist (or at least a colleague of his in the same office) for August (and also maybe the diagnostic clinic before that if I get a quick appointment) so I hope I can actually get screened for both hopefully.

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I think either of them might actually explain some mild symptoms I've often had while exercising since youth. And it could be an important puzzle pieze in understanding what's going on in my body with the fatigue etc and how to do physical activity safely.

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And in other news, the hand therapist currently has a wait list of uncertain length because one of the therapists called in sick for a long time yesterday and they don't know when she'll be back and when they'll be able to take in new patients. But at least I gave them my phone number so they can call once they have appointments again.
And I also talked to my physical therapy place about that one appointment that got canceled and never happened last year (also bc my therapist had an injury and was on sick leave for a long time) and they agreed to give me a new appointment with another therapist in 2 weeks so I can get their opinion on my hand/wrist/ellbow and neck issues too

tulip owl
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Everything is moving ✨️

tulip owl
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It's been a year... a year of pain and issues and no diagnosis yet...

My neurologist appointment is friday so maybe an answer... even if my mom thinks it will take another year to have an answer.... but at least I would be able to ask for a wheelchair prescription....

I try to not have too much hope for this appointment... and I don’t manage to process the fact that it's that soon now...

tulip owl
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Good news !
My psychiatrist tried to do me the paper that my gp didn’t wanted (and was mean about etc..) and I just received a message telling me that it got accepted 😆

limpid forge
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yay!!

waxen pine
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Congrats! Is it the ALD?

tulip owl
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Yeah 😁
It's not for autism because as I am 19 and the paper only have the infantil autism he was scared that it would be denied to he put the anxiety disorder and put autism things in it😁

waxen pine
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That's great! Is it automatically granted or does it have to be "reviewed" or anything like that?

tulip owl
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It need to be "reviewed" it's why he was scared that it wouldn't work. Even more because he is not my "médecin traitant" as he is my psychiatrist and it's normaly the "médecin traitant" who has to do that. On the paper it's even written that not psychiatrist 😅

waxen pine
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Ah yeah makes sense sorry 😂
Hope it will work 🤞

tulip owl
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Np😅😂

It worked It's why I am so happy I just received a message from "Ameli" 😆

waxen pine
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Oooh sorry, I really should go to sleep Sadfrog
That's so great! I'm really happy for you

tulip owl
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Yeah I should go sleep too😅
Everybody go sleep😴

Thanks😁✨️

stable cipher
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I’m back in appointment scheduling answer seeking hell. The first autonomic neuro appointment is six months out🫠 in the meantime I discovered pheochromocytoma and I know it’s so rare but I’m hoping it’s something cause literally all my symptoms line up

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I’m so tired of being waved off as “oh it’s just FND” when my episodes now feels so different than my usual old FND episodes and it genuinely feels like I’m ||dying|| because I can’t breathe during my episodes now

tulip owl
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😥 I'm sorry for you there are no other specialist that you can go see to have an answer ? /genq

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Today... was exhausting and it showed that somehow my mom still don't understand my fatigue... today I did "nothing" : dishes, check on a plant and as my body was quite good I danced a bit on music I like. And that's it. So when I told my mom when I was driving to the shop with her that I was exhausted and if she didn’t came to pick for grocery shopping I would have went take a nap..... and she said "but you did nothing today !"... yeah I know... compared to her who is a cleaning lady I did nothing... but even this nothing is hard...

cyan sapphire
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We can’t set the bar as high as people without illness / diagnosis and that’s okay.

tulip owl
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You are completly right thanks ✨️it's like me toward me. If sometimes tell that they did that and feel exhausted I would say that it's normal that they deserve to rest etc... but toward me it's always harder.... and my mom doesn’t help... at all. Like I know that doing the dishes is a looot for me as much sitting down that standing up sometimes... but I still have to do it because she tells me to and after that I am "||dead||" ... I cried from pain and exhaustion from that once...

So yeah I really have to work on it I think... and maybe talk about it with my therapist maybe that can help...

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Tw kinda vent

||I am also a bit upset right now... because of my dad. Everytime he has a small thing he is like making it a big thing etc... but when I talk about me almost crying and having a really hard time walking home and yeah being really sad and upset about it he tells me to stop acting up and to stop to get worked up.... like wtf you have pimple or being a bit constipated and it's a family issue but me almost crying and falling I can't complain !?
Yeah I know that it won't change anything but complaining help mentaly sometimes !

I am so upset everytime I hear him saying "I have this" or "this is weird" etc... now I just can't stop me from being upset, having a weigh on my chest and a scream in my head....

And like my mom told me too when he has issue he make a big thing about it go to the gp the gp tells him what to do and/or give him meds... and him ? He doesn’t take the meds at all or just few days and then stop and continue to complain but don’t do or take the things that are here to help him !?

Ahhhhh my parents are just making me insane and feel like shit sometimes...||

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Sorry it may have switch to a vent sorry I will make a tw and a spoil

waxen pine
tulip owl
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Yeah🥲

He is not completly able-bodied because he does have back issues but yeah exactly... and this just make people around who struggle feels like ||shit||...

tulip owl
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My appointment is today.... I am so stressed and anxious. It came out of nowhere I was on the couch and pop a weight on the chest, difficulty to breath, kinda heart palpitations and a brain completly foggy... nice anxiety/panic attack /sarcasm....

I hope so much that it will go well I won't be able to handle to be dismiss again or I don’t what....

limpid forge
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no matter what happens today, you are not making anything up. there is something going on and at some point, maybe not today, the doctors will realise that, listen to you, and you will get support.
i hope it goes well today, but if it doesnt, i still believe you 💛

tulip owl
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Thanks🥹✨️

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So it went.... I don’t know I am disapointed... he doesn’t ’t know what I have. He doesn’t understand. He send me to a medullary MRI to see... My mom asked about the wheelchair and he said it would do more bads than goods... like wtf live my life and you will see that it will only do goods as I still walk in my house and do sport... he gave me some exercices to do at home... the way he was talking about my walking was as if it was because I don’t walk that I can't walk....

And of course the wheelchair thing my mom remember it very well... so now it will be complicated for when we go to the mall for exemple to take the wheelchair....

I am frustrated... he really said that he don’t know... but never talk about something functional even for the ||tics|| !
I am frustrated I have the impression that now with my mom it will go back...

He wrote in a paper that it may/must be psychic... I really hope it means it's functional and not something like "it's just stress" or that I am making it up...

Yeah I am frustrated... no wheelchair.... no diagnosis... I have the impression to have not been completly heard and understood....

Next week I have an appointment with another neurologist (I took it months ago and kept it)

tulip owl
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The following thing I use something to translate from french so it may sounds weird

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I'm also annoyed because I feel like he thinks I can't walk at all anymore, but I can! I walk at home, I even dance sometimes, I can walk sometimes!

He said it would be taking the easy way out to get a wheelchair.

What the hell, taking the easy way out, you say!? Yes, indeed, it would be simpler to stop suffering, to finally be able to enjoy being myself again and not just an empty shell trying not tofall or something...

I'm so angry.

Really...

He also said that he didn't know if it was normal... that afterward there was only a stay in the hospital to observe me, but that it probably wouldn't do anything...

THE FUNCTIONAL NEUROLOGICAL DISORDER , DAMN IT!

Look at this.

If it turns out that's not it after all, it's okay.

Just look at this.

Don't just say you don't know.

Just look at the tics! They're functional, I don't have Tourette's!

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I really doubt he knows about FND or not... because there's absolutely no mention of it or anything...

And yet it's the second most common reason for neurological consultations after migraines apparently in my country!

It's just poorly understood by older doctors.

And just poorly understood in general.

Even though it's quite "common".

I'm really disgusted. I'm definitely going to try a different approach with the other neurologist...

I'll have something to talk about with my therapist tomorrow, I guess...