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Russell silver syndrome misunderstood by gp

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Original post by Etomidate
Yes, you’ve said.

But you’ve never been seen in person by a paediatrician or geneticist who has formally diagnosed you with RSS, nor have you had a proven episode of hypoglycaemia.

It honestly sounds like you’re using these diagnoses to mask other underlying issues.

All in all, there is no actual purpose to this thread, so I’m unfollowing.

There is no way I can prove I have hypoglycaemia without going to the GP feeling faint and fainting in the process, They don’t believe me anyway and say everything is mental and all in my head. I can’t risk feeling weak or fainting just so I can prove it and get a diagnosis.
If I am making up the fact that I have hypoglycaemia, why would my blood sugar drop to 3.6? 3.6 is not exactly a normal blood sugar level.

Original post by Etomidate
Yes, you’ve said.

But you’ve never been seen in person by a paediatrician or geneticist who has formally diagnosed you with RSS, nor have you had a proven episode of hypoglycaemia.

It honestly sounds like you’re using these diagnoses to mask other underlying issues.

All in all, there is no actual purpose to this thread, so I’m unfollowing.
Original post by Anonymous
If I am making up the fact that I have hypoglycaemia, why would my blood sugar drop to 3.6? 3.6 is not exactly a normal blood sugar level.

I regularly get blood sugars of that level and I'm healthy...
Original post by Anonymous
I regularly get blood sugars of that level and I'm healthy...

Then why do I feel weak when it’s 3.6 and feel instantly better after having lucozade? Do you feel weak like that when it’s 3.6? I read on the NHS website that it should be between 4 and 7 before eating and after eating should be 8.5 to 9 and then another user on TSR says that if it falls below 4.8 then it’s not normal.
I mean i got told I was making symptoms up for 14years by my gp. Still to this day is adamant I’m making it up.
Think they accused my mum of having Münchausen syndrome by proxy at one point as well
Original post by Anonymous
My camhs therapist told me I have RSS because she got in touch with paediatricians outside somehow but she still didn’t write it on my report when she reported back what we discussed to my gp. I know I have it though because the symptoms fit exactly and explains why I went through so much when I was younger, all the symptoms fit.

I haven’t been diagnosed with hypoglycaemia but hypoglycaemia is a symptom of RSS, especially fasting hypoglycaemia because of our large head compared to body ratio, and because we have feeding difficulties and need to be fed through feeding tubes sometimes.

I don't mean this in a harsh way but you seem to like labels and diagnosing yourself, for instance a while ago you were set on the fact you had throat cancer because you had a blocked throat from chewing gum. I don't say this to belittle you at all but you really do need to see a mental health professional as well as someone for your physical concerns if you truly believe there is an issue.
A diagnosis is there to aid you get the support you need, there is little point having these labels if they are not opening treatment doors. Even if certain things are incurable there are support groups and therapies that can be offered but often they are only open to those with an official diagnosis.
You do create a lot of these posts on tsr, whilst im glad they are helpful to allow you to vent and express yourself you often ask questions about blood sugar, if you have X etc none of which anyone can answer conclusively.
Original post by CoolCavy
I don't mean this in a harsh way but you seem to like labels and diagnosing yourself, for instance a while ago you were set on the fact you had throat cancer because you had a blocked throat from chewing gum. I don't say this to belittle you at all but you really do need to see a mental health professional as well as someone for your physical concerns if you truly believe there is an issue.
A diagnosis is there to aid you get the support you need, there is little point having these labels if they are not opening treatment doors. Even if certain things are incurable there are support groups and therapies that can be offered but often they are only open to those with an official diagnosis.
You do create a lot of these posts on tsr, whilst im glad they are helpful to allow you to vent and express yourself you often ask questions about blood sugar, if you have X etc none of which anyone can answer conclusively.

Okay so now I have hypochondria. I am getting my throat checked now because the pain is even worse. I am scared as to what they might find because it keeps poking me and moving around and making my throat bleed at night and I am struggling but managing to breathe. I only just told my parents about it, this whole time I didn’t tell anyone
Original post by Anonymous
Okay so now I have hypochondria. I am getting my throat checked now because the pain is even worse. I am scared as to what they might find because it keeps poking me and moving around and making my throat bleed at night and I am struggling but managing to breathe. I only just told my parents about it, this whole time I didn’t tell anyone

If it's bleeding then you really should get it checked, i may be misremembering but didn't you say you were going to get it checked a while ago? How did that go?
Original post by CoolCavy
If it's bleeding then you really should get it checked, i may be misremembering but didn't you say you were going to get it checked a while ago? How did that go?


I didn’t get it checked, was too scared to tell my parents, and I don’t remember saying that but I do remember making threads about it. I should have told my parents about it earlier to be honest because I found I am suffering from indigestion but I didn’t for a long while so it isn’t normal. If it’s anything big like cancer then it can block food going down, or could be small like thyroid which most people have and isn’t that much of an issue. My mum had ovarian cancer and I remember her throwing up because she couldn’t urinate at all but she’s better now
Original post by Anonymous
I didn’t get it checked, was too scared to tell my parents, and I don’t remember saying that but I do remember making threads about it. I should have told my parents about it earlier to be honest because I found I am suffering from indigestion but I didn’t for a long while so it isn’t normal. If it’s anything big like cancer then it can block food going down, or could be small like thyroid which most people have and isn’t that much of an issue. My mum had ovarian cancer and I remember her throwing up because she couldn’t urinate at all but she’s better now

Am not sure how old you are (you dont have to say) but after 16 anything you tell a GP they can't disclose to your parents so you wouldnt need their input at all to go to the GP if you didnt want to, if that's the only thing preventing you seeking help over these multiple issues then be assured that you don't need their permission to go in an official sense.
It would be worth making a double appointment so you can discuss some of this other stuff as well when you go for your throat
Original post by CoolCavy
Am not sure how old you are (you dont have to say) but after 16 anything you tell a GP they can't disclose to your parents so you wouldnt need their input at all to go to the GP if you didnt want to, if that's the only thing preventing you seeking help over these multiple issues then be assured that you don't need their permission to go in an official sense.
It would be worth making a double appointment so you can discuss some of this other stuff as well when you go for your throat

I have discussed the other issues but they just say it’s mental. I am 18 and my parents aren’t preventing me from seeking help, they say to check it out straight away. I would rather go private like I did for a head scan once because I know the gp isn’t going to believe me and I have to wait a long time for scans and things for the throat on the NHS.
Original post by Anonymous
Then why do I feel weak when it’s 3.6 and feel instantly better after having lucozade? Do you feel weak like that when it’s 3.6? I read on the NHS website that it should be between 4 and 7 before eating and after eating should be 8.5 to 9 and then another user on TSR says that if it falls below 4.8 then it’s not normal.

I feel fine down to about 3. Below that, I get clammy and get palpitations and tingly lips.
At this point it doesn’t matter what you want to call anything
What is clear is that in some shape or form you are clearly unwell
If you are not being helped by your gp then you should change surgery and see another. Get referred to a specialist or go private and see one.
It’s important that you do this straight away.
Diagnosing yourself is just a disaster waiting to happen
I’ve said it more than once so there’s nothing else to say
Yes I have experienced something similar, However, it all comes out in the wash as my mum says.
Basically, it may take years but eventually, whatever is going on will eventually come to light and you will get the help you deserve.
I have an eating problem too in the sense that If I eat I end up vomiting everything up 6 hours later (this is considered abnormal, due to something called gastroparesis) I also have a (neuro) developmental problem - autism. This makes it difficult for me to communicate and get my point across- especially with health professionals.

The first thing they diagnosed me with was anxiety (which I don't have) and said that it was causing all my problems ( this was before any major test was performed) I started to get really ill and then they kept referring me to CAMHS for what they thought was an eating disorder. I was going back and fourth between services because they both thought it was the other ones problem. Finally I'm out the other end and being looked into for an actual disease which I almost certainly have and the GP is fully backing me. I have learnt a few things.


1- Be compliant; I know this sucks and it's not going to help but the more you resist treatment, the more they will suspect a psychiatric disorder. They put me on SSRIs which I'm hypersensitive to (erratic and impulsive behaviour on a very small dose [same for all my family members]) and then they put me on antipsychotics that made me depressed ( a feeling that I had never had before) . Because of this I kept wanting to resist treatment. However, I found when If I just went along with everything they wanted they actually discharged me the same day saying that I didn't have anxiety and it wasn't causing my problems even though before they were adamant it was. What I mean is, if they offer you medication, instead of declining say " whatever you think will work best" they will then probably explain what it is for and ask you of you feel certain symptoms and you tell them that basically they're the professional so they know best. You might get put on medication anyway. Take it and if it doesn't improve your symptoms then clearly it's not needed and they will eventually stop.

2- To doctors appointments try to bring a white male; I know this is ridiculous but bringing mothers to appointments whilst they know exactly the same amount or even more than male counterparts, they won't get listened to because mothers are considered too emotional ( this is nobodies fault unfortunately some really old values are still ingrained in society and nobody can help that easily) I was having no luck and my dad was on the side of the doctors, it didn't matter what I would say about anything even subjective things like pain, they would listen to him. My parents are split up so I spent some time with him so he could experience firsthand what it's like and the struggles I have so he could gain a better understanding.I explained in detail a lot of misconceptions that he had so he could better understand.
After 1 appointment of him speaking to the GP they are applying for funding to get me actual help.
So it works.

3- Don't give up: you know you best and if something isn't right unfortunately you have to keep fighting for it. Remember, you will eventually get a diagnosis so anything that happens in between is just part of that journey. All of the setbacks builds resilience and character. You will be more empathetic and a better person than most people by the end of this.

If you ever want to talk about anything, just message me :smile:
Good luck and I hope you feel better soon!
(edited 2 years ago)
Original post by black tea
I don't think your GP is misunderstanding anything, I think you are. It is pretty clear from some your previous posts that you have an eating disorder and I think you are just in denial about this and are using RSS as an excuse.


I don't really think that it's our place to "diagnose" her here, especially if we don't have the full history, proper tests and a degree in clinical psychology or medicine. She came here for help so that the GP would listen to her so I think that is what we should try and help her with. Any other stuff isn't really our business.

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