Russell silver syndrome misunderstood by gp Watch

Anonymous #1
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I need a place to rant. So I felt like I was going to have a hypoglycaemic episode and felt weak for a week after my last period as it lasted longer than usual. I went to give bloods because I knew something wasn’t right, because I was having severe heart palpitations and my head was thumping, my blood sugar was as low as 3.6 one day when I woke up from sleep and I had to quickly eat sweets and fizzy drinks to get it up to at least 4. I felt fine on the day of the blood tests and they took 4 bottles but tested me for 7 things from thyroid, to bone profile, to red blood cell count, to vitamin D (was low last year), to HBa1C and more. All of them came back normal but for some reason the day before my blood test they called me up and gave me an urgent appointment for the next day and was talking to me like I was dying. So it came back normal and my doctor sees that I was under camhs and have been diagnosed self harm and emotional dysregulation, my camhs therapist also diagnosed me with Russell silver syndrome but didn’t write it on the report and kept writing about me eating, this was back in January 2019 when I was discharged, I also had headaches then but nothing as severe as what I went through recently. My camhs therapist made it sound like I am not eating, but I am eating when I want to and I help myself throughout the day even if it’s not at the right times, my body doesn’t get hungry at the right times so anyway, using old data my doctor wanted me to go under an adult mental health service in north London (when I live in south London) to help me with my eating but I don’t need help, I can gain weight easily. He checked my height and weight, height stayed at 4 ft 7 (normal for a girl with RSS) and weight went down a little to 29kg. I told him I can gain on my own, I monitor my weight daily and I see that I go up to 35kg which is normal for me but he says 42kg is normal for me and I am dangerously underweight and bmi is low. He said it’s my choice and I am old enough to make my own decisions but to think about it. He doesn’t seem to understand that people with RSS cannot eat regular meals like normal people, and he told me no one is normal everyone is weird in Their own way and people in Bengali communities tend to be small but I am still not normal and he’s worried about me. Also RSS is a growth disorder which causes poor weight and height before and after birth. He is accusing me of not caring and he is also accusing my mum saying we don’t care when we ran around with symptoms of RSS for the first 10 years of my life, from the age of 8 and 9 I had to monitor my height and weight but was slowly gaining and was off the charts. Has anyone ever felt misunderstood by the gp like this? Has anyone ever felt like they just used their mental health against them because they couldn’t find anything wrong with them?
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Etomidate
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A CAMHS therapist cannot diagnose you with RSS. Have you seen a geneticist?
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Anonymous #1
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(Original post by Etomidate)
A CAMHS therapist cannot diagnose you with RSS. Have you seen a geneticist?
The camhs therapist got in touch with a paediatrician and they diagnosed me, no my gp is refusing to do anything more than a blood test let alone go to a geneticist.
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black tea
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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.
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Anonymous #1
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(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.
Even if it is a slight eating disorder (one you probably won’t ever understand unless you met other people with RSS) So you’re saying the blackout thing and the hypoglycaemia thing that I had since puberty so year 5, is all in my head?
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Anonymous #1
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(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 have been tested for anorexia by camhs and I don’t have it, also if they find me in a few years time dead (not even at the age of death, got my whole life ahead of me), then they can cut me open and see for themselves that I am not just saying I have hypoglycaemia for ****ing attention and it’s not all in my head. I am not a bloody attention seeker. I get so much attention on birthdays and I bloody hate it when people give me gifts.
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Pathway
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Have you asked to be seen by a GI specialist who knows about RSS yet? Perhaps try working with the mental health services so you can prove that this is not (entirely?) MH related?
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Anonymous #1
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(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.
Answer me one thing then, surely if my bloods came back normal and there’s nothing wrong, it means I am eating right? How are your bloods going to come back normal if you’re not eating?

and now answer this, if I am eating and My bloods are normal, why does my gp want me to go under an adult mental health service to get help for eating, just so they can put feeding tubes and force food down my throat in order for me to gain weight and kill me like they did with a 20 year old man who was 3 stones? He died from cardiac arrest. Why do they need to make me eat MORE when my blood levels are normal, then it’s going to be ABNORMAL and be too high.
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Anonymous #1
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(Original post by Pathway)
Have you asked to be seen by a GI specialist who knows about RSS yet? Perhaps try working with the mental health services so you can prove that this is not (entirely?) MH related?
No my GP is refusing to do any more than a blood test, instead putting it on mental health and jumping to conclusions. If my gp doesn’t refer me to a geneticist then I won’t be able to see one. They are the gateway to specialist care.
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Pathway
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(Original post by Anonymous)
No my GP is refusing to do any more than a blood test, instead putting it on mental health and jumping to conclusions. If my gp doesn’t refer me to a geneticist then I won’t be able to see one. They are the gateway to specialist care.
Can you see a different GP in the practice? Is there a charity for RSS that you can ask for names of specialists from? Sometimes you can get direct referrals for things via your GP. Or get a secondary care referral to tertiary teams. Not everything referral wise for other specialities has to go via a geneticist when you have a genetic condition.
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Anonymous #1
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(Original post by Pathway)
Have you asked to be seen by a GI specialist who knows about RSS yet? Perhaps try working with the mental health services so you can prove that this is not (entirely?) MH related?
I will call up CAMHS on Monday and ask to speak to my therapist and ask why she didn’t write Russell silver syndrome on my evaluative report, she’s the one that told me she got in contact with outside services and the paediatrician diagnosed me, and then the therapist told me herself, so why is she just writing that I want to gain weight but not eating on my report? At the same time she says I help myself to food throughout the day. She needs to write down that I have the bloody syndrome so then there’s evidence and I am not making it up, she wrote it on a piece of paper and then I had to go home and research it myself.

My gp goes “I believe you” when I tell him my symptoms, so why is he asking to refer me to an adult mental health service then? He clearly doesn’t and is really pissing me off, I would get aggressive next time with him I don’t give a ****. He clearly thinks it’s all in my head. My sister thinks it’s good so I can get off work if I am under an adult mental health service, but it doesn’t work like that.
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Anonymous #1
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(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.
Why did I vomit so much at school when that thing happened for the first time in year 5 then? I didn’t even eat anything, I was throwing up stomach acid and got sent home, but that’s the only time that happened.
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Pathway
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(Original post by Anonymous)
I will call up CAMHS on Monday and ask to speak to my therapist and ask why she didn’t write Russell silver syndrome on my evaluative report, she’s the one that told me she got in contact with outside services and the paediatrician diagnosed me, and then the therapist told me herself, so why is she just writing that I want to gain weight but not eating on my report? At the same time she says I help myself to food throughout the day. She needs to write down that I have the bloody syndrome so then there’s evidence and I am not making it up, she wrote it on a piece of paper and then I had to go home and research it myself.

My gp goes “I believe you” when I tell him my symptoms, so why is he asking to refer me to an adult mental health service then? He clearly doesn’t and is really pissing me off, I would get aggressive next time with him I don’t give a ****. He clearly thinks it’s all in my head. My sister thinks it’s good so I can get off work if I am under an adult mental health service, but it doesn’t work like that.
If you've been diagnosed with RSS it should be on your diagnosis list that your GP has. They should be able to definitively tell you. I'm not gonna lie, I'm genuinely quite surprised that you never thought to ask questions during doctors appointments when you were a teen/older child.

Your GP may simply not understand the GI manifestations of RSS, but just because you have RSS doesn't mean you don't need or shouldn't eat. Or need to eat substantially less than a person without RSS. What happened to that other person with RSS is not the same thing. Tube feeding and similar come with risks, but sometimes tube feeding is a necessary evil when you are unable to sustain yourself orally. Some people with my genetic condition and the same comorbidities have died from complications caused by interventions, doesn't mean that it wasn't necessary. Just unfortunate and tragic for those affected.

Don't get me wrong, I understand the frustration, I get frustrated with doctors too who don't know about my conditions and how they interact with each other, but if you truly don't have an eating disorder (ARFID, AN, etc.) then you would want to have support with your eating if you're feeling as bad as you say you are. Doctors don't have unlimited brain space to know and remember everything. They have maybe seen a slide or two on what you have in their whole medicine education. They're human too. You might not even need a feeding tube, you might be able to figure out a way to manage your eating and other issues (e.g. heart stuff, blood sugar, etc.) via the help of a dietician.
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Anonymous #1
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(Original post by Pathway)
If you've been diagnosed with RSS it should be on your diagnosis list that your GP has. They should be able to definitively tell you. I'm not gonna lie, I'm genuinely quite surprised that you never thought to ask questions during doctors appointments when you were a teen/older child.

Your GP may simply not understand the GI manifestations of RSS, but just because you have RSS doesn't mean you don't need or shouldn't eat. Or need to eat substantially less than a person without RSS. What happened to that other person with RSS is not the same thing. Tube feeding and similar come with risks, but sometimes tube feeding is a necessary evil when you are unable to sustain yourself orally. Some people with my genetic condition and the same comorbidities have died from complications caused by interventions, doesn't mean that it wasn't necessary. Just unfortunate and tragic for those affected.

Don't get me wrong, I understand the frustration, I get frustrated with doctors too who don't know about my conditions and how they interact with each other, but if you truly don't have an eating disorder (ARFID, AN, etc.) then you would want to have support with your eating if you're feeling as bad as you say you are. Doctors don't have unlimited brain space to know and remember everything. They have maybe seen a slide or two on what you have in their whole medicine education. They're human too. You might not even need a feeding tube, you might be able to figure out a way to manage your eating and other issues (e.g. heart stuff, blood sugar, etc.) via the help of a dietician.
I know I might not need a feeding tube. What I am trying to say is what if i die the same way if it came to the fact that I did need a feeding tube? People with RSS don’t have fat at all on their bodies, so as a teenager/adult they don’t even look like grown men/women so we don’t have strength. That’s my life gone at 18, but in a way it might be good if that happens what with everything else that I have and my parents and no one else needs to worry, I am not the youngest child, my sister is 7 years younger than me (massive age gap because of me and appointments) but I get the most attention because of my health and because of the weakness I am not even allowed personal boundaries from my mother, no one will need to worry if I am gone. Many people who keep falling ill like this, like one after the other, might also feel like they don’t have the strength to fight anymore and would rather be at peace, and death is the only way they can get it.
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Anonymous #1
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I usually never throw up but did so much in year 5.
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Anonymous #1
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(Original post by Pathway)
If you've been diagnosed with RSS it should be on your diagnosis list that your GP has. They should be able to definitively tell you. I'm not gonna lie, I'm genuinely quite surprised that you never thought to ask questions during doctors appointments when you were a teen/older child.

Your GP may simply not understand the GI manifestations of RSS, but just because you have RSS doesn't mean you don't need or shouldn't eat. Or need to eat substantially less than a person without RSS. What happened to that other person with RSS is not the same thing. Tube feeding and similar come with risks, but sometimes tube feeding is a necessary evil when you are unable to sustain yourself orally. Some people with my genetic condition and the same comorbidities have died from complications caused by interventions, doesn't mean that it wasn't necessary. Just unfortunate and tragic for those affected.

Don't get me wrong, I understand the frustration, I get frustrated with doctors too who don't know about my conditions and how they interact with each other, but if you truly don't have an eating disorder (ARFID, AN, etc.) then you would want to have support with your eating if you're feeling as bad as you say you are. Doctors don't have unlimited brain space to know and remember everything. They have maybe seen a slide or two on what you have in their whole medicine education. They're human too. You might not even need a feeding tube, you might be able to figure out a way to manage your eating and other issues (e.g. heart stuff, blood sugar, etc.) via the help of a dietician.
My GP didn’t even know I had RSS, paediatricians who saw me as a baby/child from tertiary teams did, I didn’t even know I had it until 17 so how would my GP know? My Gp just thought I was suffering from constipation and was severe and that’s a symptom of it.
The reason why I didn’t ask questions as a teenager/adult is because I didn’t even know what RSS was myself, I have never even heard of it until the age of 17, plus I looked normal for my age up to the age of I would say 14, which is when I realised that I wasn’t growing and still looked like a 12 year old.
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Pathway
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(Original post by Anonymous)
My GP didn’t even know I had RSS, paediatricians who saw me as a baby/child from tertiary teams did, I didn’t even know I had it until 17 so how would my GP know? My Gp just thought I was suffering from constipation and was severe and that’s a symptom of it.
The reason why I didn’t ask questions as a teenager/adult is because I didn’t even know what RSS was myself, I have never even heard of it until the age of 17, plus I looked normal for my age up to the age of I would say 14, which is when I realised that I wasn’t growing and still looked like a 12 year old.
That doesn't make sense...lol...All my specialists (tertiary care and secondary care) speak with each other because they have to to coordinate my care/run things passed each other, they speak to my GP and keep him in the loop. They even speak with my mental health team, which is secondary care. When relevant they speak with people like my physiotherapists and orthotist, etc. Something doesn't make sense here. But yeah, find out from your old mental health team who (ie which paediatrician) diagnosed you and ask to speak to their secretary or something. If you've been diagnosed you should have some sort of documentation attached to your NHS number and some documentation should've been sent to your GP. You must've had some sort of documentation sent to your house detailing your diagnosis, perhaps ask your parents for any medical letters they may have. You could make a Subject Access Request for information from the hospital who you got care from (the hospital where you got diagnosed) and they should give you documentation too...

Idk. This is just not making sense.
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Anonymous #1
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(Original post by Pathway)
That doesn't make sense...lol...All my specialists (tertiary care and secondary care) speak with each other because they have to to coordinate my care/run things passed each other, they speak to my GP and keep him in the loop. They even speak with my mental health team, which is secondary care. When relevant they speak with people like my physiotherapists and orthotist, etc. Something doesn't make sense here. But yeah, find out from your old mental health team who (ie which paediatrician) diagnosed you and ask to speak to their secretary or something. If you've been diagnosed you should have some sort of documentation attached to your NHS number and some documentation should've been sent to your GP. You must've had some sort of documentation sent to your house detailing your diagnosis, perhaps ask your parents for any medical letters they may have. You could make a Subject Access Request for information from the hospital who you got care from (the hospital where you got diagnosed) and they should give you documentation too...

Idk. This is just not making sense.
They look at me like they have no clue what it is, and like they have never heard it even in their medicine education, I don’t even know how that is even possible. All that time they put down constipation, and I think soon after running around with constipation and being referred for ultrasounds, we noticed my spine was bent so I had to go to hospitals for that, and then we noticed my eyes are really really bad and I was born cross eyed so I had to go to a hospital in north London for that (nothing to do with RSS), then my primary school picked up on the fact that I was underweight and weighed 19.1kg at the end of ks1 so I was referred to check up on that at 8 and 9, and I was growing but weight was still abnormal for my height, it didn’t catch up on the charts. I remember once I was asked if I thought my legs would grow to the same length (it wouldn’t because my spine is bent) and I said yes, and parents were told that if it was more bent I would have died, but I did not require a back brace or surgery because it wasn’t that bad, and I remember being asked to sit in a wheelchair, but I couldn’t put both feet on the peddles, the left leg would and the right wouldn’t, and my dad was there and he asked me to sit properly and my eldest sister who was roughly 21/22 said “she can’t” in Bengali, but this was my spine. That’s all that I remember that happened in the past, obviously don’t remember much because it’s been a few years now since I stopped having hospital appointments.
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Anonymous #1
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(Original post by Pathway)
That doesn't make sense...lol...All my specialists (tertiary care and secondary care) speak with each other because they have to to coordinate my care/run things passed each other, they speak to my GP and keep him in the loop. They even speak with my mental health team, which is secondary care. When relevant they speak with people like my physiotherapists and orthotist, etc. Something doesn't make sense here. But yeah, find out from your old mental health team who (ie which paediatrician) diagnosed you and ask to speak to their secretary or something. If you've been diagnosed you should have some sort of documentation attached to your NHS number and some documentation should've been sent to your GP. You must've had some sort of documentation sent to your house detailing your diagnosis, perhaps ask your parents for any medical letters they may have. You could make a Subject Access Request for information from the hospital who you got care from (the hospital where you got diagnosed) and they should give you documentation too...

Idk. This is just not making sense.
Doctors and nurses asked my mum to abort me because I was born with this rare illness, my eldest sister told me, but because of our religion and the fact that it’s a sin to kill, my mum didn’t and she was 5 months pregnant with me so my organs were developed. Har said she’s going to have a big abnormal head shape, and threatened my mum saying she’s going to be like this and that but it didn’t bother my mum. She said let her be like that. My sister would know because she was the oldest and had to go to scans and things with my mum and she was 13 at the time. They asked for water from the belly button to test it but there is a risk with miscarriage for that so my mum didn’t do that.
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black tea
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(Original post by Anonymous)
Even if it is a slight eating disorder (one you probably won’t ever understand unless you met other people with RSS) So you’re saying the blackout thing and the hypoglycaemia thing that I had since puberty so year 5, is all in my head?
I never said that. Hypoglycaemia can be caused by not eating frequently enough - you have previously said that you sometimes eat one meal a day.

(Original post by Anonymous)
Answer me one thing then, surely if my bloods came back normal and there’s nothing wrong, it means I am eating right?
No, it doesn't necessarily mean you are eating right.
(Original post by Anonymous)
Why did I vomit so much at school when that thing happened for the first time in year 5 then? I didn’t even eat anything, I was throwing up stomach acid and got sent home, but that’s the only time that happened.
No idea but sometimes people just vomit. You said below that it was only a thing in year 5, don't see how that's relevant to what is happening now.
(Original post by Anonymous)
Doctors and nurses asked my mum to abort me because I was born with this rare illness,
But you are saying you didn't know you had RSS until you were 17?

Whatever you medical issues and diagnoses are, you clearly need support with your mental health. If you are currently getting help from CAMHS, it is hardly outrageous for your GP to consider referring you to adult mental health service for ongoing support.
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