Raynauds....The begginiing stage of oh so much more to come!

Hi everyone- I have been a member for sometime, but have just hung back and read everyone's post rather than posting on my own. I decided it's time to get serious about this. I have MCTD which includes Lupus, Scleroderma, Raynauds, Dermatomyositis and five more of these wonderful titles that just basically means your going to be miserable most of the time! I have dealt with it pretty well I think. I have a pain pump that pumps Fentayl 24/7, I have done IV chemo for the better part of 10yrs-along with IVIG infusions and the list goes on and on. I have dealt with it, but after noticing my two youngest son's feet and lower legs turning purple for sometime, fear struck my heart! My diseases started with Raynauds as a young child and then led into the nightmare I live on a daily basis. I took them to the doctor to discover what I already knew. They both have Raynauds too! My younger brother has Lupus and what looks like it's turning into a case of full blown MCTD and now my youngest children are following in our path. The research say's it's so unlikely that you will have other family members that will suffer the same fate, but my experience has been so much different! We need to be smart about these diseases and watch those that carry the same blood as we do. The only good thing about this is I have found out early with my children and they won't have to go through the ton's of doctors looking at them like their crazy before getting treatment! The key to a cure is education.....arm yourselves with as much informations as possible! Good luck to you all :)

5 Replies

  • I am so sorry to hear that. I have scleroderma and associated conditon and I am a mum to 2 young boys. It sounds very scary. You want you children go throug what you have been.

  • Thank goodness we are so much more educated about our conditions, and can recognise symptoms if they should occur. I'm in a similer situation with one of my sons. I'm hoping it will turn out not to be the same condition as mine but at least we can can keep an eye on it and know what to look out for. I've only just realised that although I was diagnosed about 9 years ago, it seems that sympyoms I have suffered with since a young child, would suggest I have had Scleroderma internally for most of my life. People just didn't question things in those days though, you were just expected to 'get on with it'. Best wishes for you and your children.x

  • My true apologies about your son. I've never TRULY been scared until I realized this is affecting my boys. And I am like you-I have suffered since I was a very young child but was diagnosed only 11yrs ago. Best wishes back and thank you for your comment :)

  • I am really sorry to read about your problems and your fears for your sons but would like to offer a word of reassurance to other readers with Primary Raynaud's. I am a man of nearly 61 years and have suffered with the condition for as long as I can remember. So far it hasn't developed in to anything more. I wish you and your family all the best.

  • That is comforting to know. Although Raynauds is not a fun thing to have, I'd much rather them have Raynauds than MCTD, or Lupus and so forth. Thank you so much for taking the time to try and give some reassurance :) It is highly appreciated. Take Care- Toni

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