GOOGLE!!! good or bad!!!

[Kerry72]

I've had a reduced appetite for about a month now. I want to eat but feel full after a few mouthfuls!! Today I have been googling things today and came up with "early satiety" seems to fit what I have. Now seeing if there is a connection to MCTD......am I just being paranoid!!!!

[Blue-Bunny]

You're being paranoid. MCTD can be tested for, however it is down to your doctor to diagnose you, not the other way around ^-^.

But judging from what Wiki says, maybe you should broach the subject with your doctor? As it is a known cause of Raynaud's and Scleroderma. That said it tends to be a bit like CREST... lots of things not just one. It looks like there's a blood test for it.

Here is a link that some Medicine Undergraduates use for a brief overview of different conditions.

mdmedicine.wordpress.com/20... Specifically MCTD in this case ^_^

[Kerry72]

It is MCTD that ive been told ive got- they cant put me into any particular box- its looking more like scleroderma and its definitely raynauds- but was just trying to see if my lack of being able to eat a meal had any relevance and whether to mention it to the rheumatologist when I see him in April- obviously I dont intend to try to diagnosis myself- just this has been going in a while now and wanted to see if its something to discuss with my GP or cinsultant.

[nanadx20]

The last time I saw the rheum. dr.....I asked if what i had could have something to do with my thyroid based on research I had done...he looked at me and said 'no, what we are dealing with is much more serious'....he asked was i Googling?' Well...yes.... ...He gave me a look....then told me I had Crest Syndrome..... and to google it...... so ...google is helpful...but always talk to your Dr. and get your blood tests to know for sure.... ~debi

[mrsqwerty11]

I would certainly ask for a blood test to diognose this. I too googled as was told I had limited sclerederma, crest and raynauds, I also got a glare off my gp when I said I googled as did not know or never heard of this. In all honesty I would hv been dead within 6 months according to google, after 11 yrs I now understand about it, I also tell ppl I hv raynauds and don't mention the sclerederma or crest as most ppl hv never even heard of thes two, hope you get sorted soon.....

[Irene55]

Before I was diagnosed with Scleroderma/Polymiositis my GP had no idea what was wrong and was telling me to take painkillers. He said the hard, shiny, itchy skin that was growing on my chest was "just cosmetic" and was giving me various creams. I spent 6 months Googling my symptoms and came up with the exact diagnosis my rheumatologist gave me, but I also came up with the symptoms of arthritis. I used to be almost in tears when I went to my GP but he hardly looked at me. He called me a crock one day and thought it was amusing.

It was the surgeon who did my carpal tunnel operation who saw my shiny, swollen hands and listened to me who referred me to the rheumatologist.

I don't have arthritis, but except for fatigue, now nearly 2 years later I feel almost back to normal. My medicine will be again reviewed in October. That is what Professor Denton in the Royal Free recommended when I saw him.

Last summer my rheumatologist asked if I would let him send my notes to Oxford University for research they are doing into vasculitis as some of the symptoms are similar.

I took a chance on being laughed at and told him that I was not surprised at his original diagnosis as I had looked on Google for months and come up with the same thing. He did not laugh but said that a lot of information is available online. I told him that I go on forums like this one and he said it is a good idea. He told me that some of the people on these forums know more than the doctors.

I agree, because I have read some good comments here. Someone who is ill, knows it, most GP's know nothing about connective tissue diseases. Their opinion seems to be, "if I don't know what you have got, it means you are not sick." I know all too well the feeling of desperation to know there is something wrong and the doctor saying it will be cured with Paracetamol.

[fruitpastle in reply to Irene55]

My goodness..i agree with everything you have said..when ur not the tpye of person that goes running to the doctor on every little whim,when u do go and you know thers something wrong they should listen to you ..ive had the same problems with my doctors.. i have researched so much online about limited scleroderma and mctd\raynaurds that i told every1 that this is what i had but every1 kept saying i didn't. so when i came bac from the specialist saying i had crest/scleroderma i knew it all already

so yes googling can be where you get more info and this forum is real and true..but like you i also had myself dead in 6yrs with googling my symtoms.. and i cried for 2days ..but now i know not to believe all you read but on the other hand there are some fab sites with positive and helpful information...the thing that i have learnt throu this journey is to not NOT EVER get stressed out about anything all the wee daily chores and problems relationships with people money worries whatever we worry about...it all adds to negative energy flowing thro us if u have a bad day just let them be bad days and know that it will change and soon u will be having a good day and yes listen to your own body.. doctors are not trained in all illnesses and dont know everything.. its us ins on here.. that will and can advice and help each other because we feel it all and can connect...

[Irene55 in reply to fruitpastle]

Thank you for you answer. I have hardly ever been to the doctor in my life and like you I think if suddenly someone who has been healthy starts to go to the doctor they should listen. They should listen to all patients but they should realise that you are not going there to pass the time.

At first the doctor said the pain in my legs was shin splints because I had a what looked like a bump on both legs. But as I told him that I could hardly walk up stairs or get in the bath or even stand up from a chair, he said he couldn't see anything wrong and in a few weeks of painkillers it would be better.

I lost 5 kilos of muscle in my arms and legs and could hardly get dressed by the time I was diagnosed.

Another problem is that the NHS has told doctors they must not order blood tests or any tests unless they think it is a matter of urgency. So not all the blame can go on the doctor.

But the biggest factor is that doctors know nothing of these kind of illnesses, so that is a problem.

We are the patients, we cannot be expected to know what kind of doctor we need when we are ill. We trust the doctors and as I found out, that is something we cannot do but we have nowhere to go.

[oconnor]

Have you had your thyroid tested ? as this can happen if its under active ,xxx Tina

[nettie545]

As with everything, I thing Google has an u-side and a down side, but I accidentally came upon a Vasculitis site and found out a whole lot about Behcets syndrome and a lot of the symptoms fitted what I'd been going through for years. The Doctors have been baffled and couldn't explain what was wrong with me. I am taking the Google notes to my GP and I know I will get a funny look from her, but quite honestely, 10 minutes with a GP does not give them or you time to really search what's wrong with you. It helped me to understand more what could be wrong with me.

[Kerry72]

thanks for everyone's input, I've not had my thyroid tested. I think I am going to monitor my intake over the next week and see the GP before I see the rheumy....I feel I have so many different symptoms that I always look to see if there is any connection to MCTD, as I feel like I've lived at the Dr's surgery since December!!! until last April when I first got any symptoms I don't think I'd been to the Dr's since my late teens (apart from for a few things during my 2 pregnancies)

[Hidden]

I do have CREST . Now confirmed. My symptoms were many and varied too and I felt I was being deemed a hyperchondriac. I knew I wasn't. It was simply that my gp had never heard of CREST. Like you say,;If they don't know what you have, then you haven't got it. Such arrogance! You will be tested for the antimitochondrial and anticentromere. I expect you already know this anyway. Just tell people you have Scleroderma until you know which of the categories of it you fall into. Professor Denton is extremely knowledgable and you will be well looked after at The Royal Free. I have had CREST for over 20 Years and Here I still am. We are all different in symptoms and severity. Do not fear the worst. Best of luck.

[overnighthearingloss]

Google can provide you with the correct answers. It can also potentially provide you with a lot of claptrap and people running scams for miracle cures.

Like everything it needs to be approached with caution.

But these days you can often search and get links to medical journals. Written in medical speak they can often be difficult to interpret, but can give an indication if you are on the right track.

Doctors tend to specialise in particular fields with a GP being a 'General Practitioner'. That doesnt mean they know nothing about your condition but obviously a specialist in the field will know more. And you may indeed know more about your condition than certain doctors or GPs.