hannah015 20/12/14
Last reply 3 years ago
Family history

Hey all

Hope your all ok and excited for Christmas 🙂

Just wondering did anyone get asked about there family history or past illnesses etc. Just find it funny how no one has asked me about any childhood illnesses etc I just think it would of been worthwhile when diagnosing someone with ms to ask this in order to find a pattern.

Have a fab Christmas all xx

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stumbler
3 years ago

You’re quite right, it would be useful, from a research perspective, to obtain background details about newly diagnosed people.

But, that might lead to someone finding the cause, a cure being found, Neurologists being laid off, big Pharmaceutical companies going bust and the world stopping rotating……..

Now, would we want all that?????????


hannah015
3 years ago

Lol @stumbler good point why would we ever want a cure 😉

I find it so odd that they say they want cures but where’s the research


brownk
3 years ago

I think I was the one who said about the ms links in the family I wasn’t asked!!
Your right it surely should be asked and the info used wisely


hannah015
3 years ago

Hey @brownk

Yes and it’s shocking cause it seems more and more people I talk to with ms no one has been asked. Seems weird if they are trying to find a cure how they can do it without finding out our history. I am planning on asking my dr Monday at my app why this is the case. X


joolz
3 years ago

Heya @hannah015 & @stumbler,

Mine asked me all sorts of questions including any past head injuries, surgeries, family history and childhood illnesses, etc. Granted, the folks that diagnosed me are from the UBC MS Clinic which is attached to a learning/researching hospital. From items I’ve read about other peoples experiences, I’ve been pretty fortunate to have a good crew on my side.

PS: Not ready for Christmas in the least @hannah015, but excited all the same!


brownk
3 years ago

@hannah015 yes good plan..see what they say!
My auntie has ms diagnosed in her 50’s…However my mum is her twin so I’m hoping someone might be interested in my story.

Have a fab Christmas – not long now


wilf
3 years ago

This seems a very negative conversation. They asked me about family and medical history, standard practice for all doctors.

There’s a ton of research going on to find new treatments, causes, cures. I and many others on here raised money for ms research this year. I’m starting a new Dmd in January that wasn’t available at the beginning of this year. We have a much better prognosis now than we ever had before.


hannah015
3 years ago

Hey @joolz

Sounds like you are being looked after well which is good 🙂 I was in a hospital in birmingham for 3 weeks when diagnosed which was also a training hospital so seems odd they didn’t ask anything about past health etc.

Lol it’s the first year I have been organised and soooo excited. I love Christmas x


hannah015
3 years ago

@brownk will do 🙂

Yeah that is interesting 🙂 have a fab Christmas x


hannah015
3 years ago

@wilf not negative I just wondered why I hadn’t been asked any questions and neither had anyone on the ward or anyone I know who has ms. Was just wondering if anyone else had experienced same. I agree things are being done I just thought maybe there was more to be looked at


cazzzzzy
3 years ago

It is soooooo important that everyone gets asked these questions and it’s so sad to hear that not everyone has been asked! Shocking! 🙁 …. We will only find answers if the most possible research is done! I thought when first dx that I would be given the third degree about my history – such as yes family history, illnesses, smoking, drugs, alcohol, exercise, diet etc… We will be closer to finding answers this way… Also if these things were studied along with genes so much progressive illness from MS could possibly be prevented!!!

As for family history, lots in my family, Uncles both had neuro illnesses and I had a sister that died at birth from spina bifida and my bro has what we think is ADHD and a twitch… My son is looking like he has this damn bad gene too 🙁

I think there is a hell of a lot more to be looked at!!! xxx


hannah015
3 years ago

Hey @cazzzzzy

It’s so true I feel it odd that no drs asked my history of health or my family’s. I spent nearly a month in one of the top neurological training hospitals and nothing asked. I feel it would be of major use to ask all people diagnosed with ms about childhood illness, family history and possibly stress they had suffered. They do talk a lot on internet about links to childhood illness and stress so seems strange they wouldn’t ask all msers to find links.

Sorry to hear about your son, fingers crossed he is ok

Have a wonderful Christmas xx


cazzzzzy
3 years ago

Yes you’re so right @hannah015 ! … It would be of major use to ask all people diagnosed about their history and family connections! It is also very doable too, it is not impossible and would only help!
We need answers so doing things like this can only help! We all need to have some say in where the research money we raise goes 😕

I do think it either is or isn’t in our genes and things like illnesses etc are triggers and we would be closer to finding answers if we were each asked lots of questions!

And thank you! Hope you have a great Christmas too! 😀 xxx


hannah015
3 years ago

Hey @cazzzzzy

I think it’s just so odd that nothing was asked. I have been waiting for treatment since March after a week of steroids and blood plasma exchange. I had it confirmed in august I would have Lemtrada treatment but since I have heard nothing. Chased drs, contacted local mp, emailed NICE, and still nothing. Feels like they just don’t do as much as they should to help.

Thanks Hun you too xx


stumbler
3 years ago

Going along the line of data collaboration, are UK members aware of this initiative :- http://www.ukmsregister.org/

Not exactly a family history, but still a data collection……


gwenny
3 years ago

@brownk, I was diagnosed last year, and I was 59 at the time. I couldn’t believe it at first, but had to come to terms with the diagnosis. My sister-in-law also has MS, and was aged 35 when she was diagnosed. She has been very supportive too, and we’ve been through some similar circumstances, and we’re both currently on the same treatment, Tysabri. Unfortunately I’ve tested positive to the JC Virus, so next Sept my Neuro is changing my treatment to Gilenya.
My Neuro has been brilliant and always answers any questions my Hubby or I have for him, so it looks like I’m extremely lucky in that regard.


todd
3 years ago

I was questioned about family history by both the neurologist who diagnosed me and the specialist I see now. One question that sticks out, which is not so much family medical history as family lineage and seems to be of particular interest for statistical purposes, asked where I lived between the ages of 10-15. I didn’t ask and haven’t researched what the thinking is, because it may or may not be related to MS traditionally affecting more people from northern European descent and from a northern climate. That seems to be shifting somewhat, because the MS specialist made reference to the increase in MS among people of African and Hispanic descent, and in parts of the US that have not previously had as many diagnoses of MS.


aussiekylie
3 years ago

I was asked if there was any family history but it kind of came to a dead end when I said that my mum was adopted.
I didn’t get asked about my diet, not even a general question as to whether I regularly eat fruit & veg. the dietary component seems to be overlooked even though it’s proven to contribute to other issues such as diabetes and heart disease.

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