Russell silver syndrome misunderstood by gp Watch

Anonymous #1
#61
Report Thread starter 1 week ago
#61
(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.
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Anonymous #1
#62
Report Thread starter 1 week ago
#62
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.
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Anonymous #2
#63
Report 6 days ago
#63
(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...
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Anonymous #1
#64
Report Thread starter 6 days ago
#64
(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.
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Pugglet
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#65
Report 6 days ago
#65
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
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CoolCavy
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#66
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#66
(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.
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Anonymous #1
#67
Report Thread starter 6 days ago
#67
(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
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CoolCavy
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#68
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#68
(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?
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Anonymous #1
#69
Report Thread starter 6 days ago
#69
(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
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CoolCavy
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#70
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#70
(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
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Anonymous #1
#71
Report Thread starter 6 days ago
#71
(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.
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Anonymous #2
#72
Report 5 days ago
#72
(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.
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Sammylou40
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#73
Report 5 days ago
#73
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
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