jst diagnosed in shock HELP!!!!

[shirleygirl]

hi all, i was seen by prof hughes lst wed and he finally rediagnosed me with aps after 8 yrs told i had ms. my INR is 0.8 and the prof says he wants me to start heparin injections asap

any tips for me b4 i start anyone?!

[DorothyItaly]

Hi there, I have to leave others to talk about INR and heparin because I don't have to do that. I just wanted to say congratulations on being diagnosed! It is a big step forward. Dx

[shirleygirl in reply to DorothyItaly]

thankyou!!!! x

[Jade]

Hi I know it is a shock but if you have Hughes as opposed to MS I believe that Hughes is preferable. Your INR is what any person not on warfarin would have.

INR is only measured once on warfarin.

Hopefully when you have been on fragmin a while you should soon begin to see an improvement in your symptoms.

Congratulations on getting to see Professor Hughes he is great isn't he?

[shirleygirl]

hes lovely yes, especially compared to neurologists haha he did a dry eye test on me aswell and that was dry obviously but im confused is my INR ok then? sorry im a beginner!

[MaryF Administrator]

Hi there, and welcome, once the shock has warn off.... I hope you will find us all helpful in fine tuning things and answering questions. Take it all nice and steady.. your reaction is not unusual... and to have the correct diagnosis will help immensely with your general care, both from your perspective as well as the medical one. Best wishes. MaryF x

[Manofmendip]

Welcome Shirley.

It must be a huge relief to have a Dx of Hughes and not MS.

Yes Prof Hughes is great and, without him, many of us would be in the ground or up the crem chimney by now; what a saviour he is to us all.

Please keep us in the loop about your progress but I agree with what others have said. You don't have to worry about your INR until you are on Warfarin, which will probably be the case after a trial on Fragmin.

If you keep in touch I will give you the benefit of my 11 years as a Hughesie and I'm sure all of us on here will.

Where are you from?

Best wishes.

Dave

[Hidden]

Welcome! Well done for getting your diagnosis from Prof Hughes. I started the Fragmin injections in December following my appointment with the Prof at London Bridge and have to say that some of my symptoms have been alleviated by this. I also have mild Sjogrens too and find that lubricating drops really help. You can get them over the counter so i try to keep some at work, home and in my handbag so i always have something "on the go"!

[LesJames]

Very useful info on injecting heparin, I usually get huge bruises, which take an age to go.

Thanks