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283 Views 5 Replies 3 Participants Last post by  connie mitten
Hello Again,
Last march My fingers started going white and limp, No circulation at all. That is what actually finally convinced me and the doc that I had more symptoms of Lupus, long story short, now this is the second time that I have had to deal with my fingers doing this. I don't actually understand much about the disease, the only symptom so far is the numb and white fingers. The rumy said it was Raynauds, I am just wondering what else to look for as far as Raynauds. Today was the first day this season that it happened again, I was watering my flowers when my fingers got wet, and cold, and my pinky's started going white, and numb. I know that I will need to wear gloves, and use hand warmers. I am just really scared about what it next???? This is why I went out of work last March due to the same symptoms. The doc is actually thinking that I have MCTD....really scary, but I guess I should just take one symptom at a time.....Thanks for all your help here on this has actually been a life savor. I think I only come here at my most desperate times., then there is noone to turn too...
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Hi Connie,
sorry to hear that you are so concerned.
I think you really are doing all you can in terms raynauds by keeping your hands warm etc.
I have had raynauds for many years now and i've just learned that to except that it there and try to follow the medical advice.
I have MCTD and yes raynauds is associated with this along woth other ctd's
It's good that your rheumy is looking into this. Sometimes raynauds can occur many years before other symptoms of ctd appear, this happened in my case. And sometimes raynauds can be a primary disease which is not associated with a ctd.
Do you have any other symptoms? Has your rheumy done blood tests? Do you know the results?

Good luck with things and try not to worry yourself too much

Take Care

Cassie :)

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Hi Connie,
I am so sorry that you are going through all of this. The thing thats sticks out to me is why has your doc not put on some medication, with and esr taht high and with all your other symptoms. I am not a doc but I think you need to contact the rheumies office and request some appropriate meds, see if you can get your gp on side with this.
In terms of the centromere antibody it is more common in crest syndrome or systemic sclerosois than in scleroderma, well systemic sclerorsis/ CREST is actually the systemic form of scleroderma. Very complicated sorry.
I have found a link that gives more info. You can follow these pages thnrough as there is quite alot of info over a few pages.

MCTD can only be diagnosed with the presence of the anti Rnp antibody and a speckled pattern ANA, these are very specific criteria.
The really important thing is try not to worry. I know its easier said than done and actually i think the worry is compounded by not a diagnosis, i think that atleast if you know whats going on and have a plan for your treatment it can make things easier to put straight in your head.
My gp had to demand a diagnosis and a treatment plan from my rheumy as i had been left dangling too.
I think if you can find the strength you should start with the gp tell him what you have found out on your own and see how he responds, i think you should definately be on some kind of disease modifying drug.

I really hope things work out and i hope i haven't given you too much info.

:there: :hugbetter:

Take Good Care of yourself
Cassie :)
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