All Clear - For Now

Dear All

After a few weeks away I spent last night reading through the recent posts.   What a lot has happened.

First of all - Tigerlily, I am so pleased you are getting better every day.   I was beginning to feel freeky and a little bit guilty as this has happened to me too, I feel so WELL after my surgery and continue to do so.   In fact so well, that my husband has threatened me with contacting my doctor and asking him to put one gland back (only joking) as he is struggling to keep up with me.   Well, I have a lot of lost time to make up!  All my horrible symptoms have disappeared.

Brigitte, I hope that you are doing well now, post surgery.   Amanda, I hope that your genetics appointment will be able to clarify your situation  with FHH soon.   It must be awful to be worried about it all the time and not really be convinced that it has nothing to do with how you ae feeling now.

We haven't 'spoken' Diana but I saw that you are one of Mr FPs Girls, so you have been in good hands and I hope that you are recovering well.   Jasmine, it seems it is your turn soon, so good wishes for a good outcome soon.

Lucie, Nancy, Dee and Kathi, I have read your postings too and hopefully you will all get a resolution in the New Year.   I know how you feel having been unwell for almost three years pre-September.   And LIttle Audrey, your journey to good health continues apace, and it sounds as if you are making progress.   Keep it up, I am sure you will get there.

Now for my news.   As many of you know I have MEN 1 so just before I went away I had a couple of MRIs.   These have come back negative!   I am in the clear for now.   My doctor has told me that I have a rare (?) very, very mild case of MEN 1 and it is entirely possible that I will never develop any of the other problems associated with MEN 1.   Hooray.   My bloods have come back as 'perfect' and he told me that my bones with slowly, over the next year, regenerate to some extend (wrists will take 2 years). Has anyone else heard of this?   Now I will continue to have blood tests periodically and US scans once a year but otherwise nothing.

One sad thing though.  My eldest daughter has tested positive for the MEN 1 chromosome.   She doesn't have any symptoms and is much older than I was when I first got Hpth so this is seen as positively good news.   Like me, she will have to be monitored though.   My youngest daughter is being tested early in the New Year.

So thats all from me for now.  Best wishes to everyone for the Season.

Anna

Good to hear from you again, Anna, and that's such good news for you and hopefully for your daughters as well. Thanks for posting how good you feel after the op. I was beginning to feel a bit odd myself feeling so well, and it's often difficult to post good news when others are suffering. But I think on the whole we want the whole picture and all news from people on the other side of the op, however good or bad.

I hope you can breathe easily now and enjoy the festive celebrations without the MEN1 cloud hanging over you. That is such good news!

Love from Tigerlily xxxx

Hi Anna,
I am glad you had some good news and that you are continuing to feel well and really good news on the clear MRI's.  Long may they continue and it is good that they feel that it has a mild presentation in you.  I know they will also keep a close eye on your daughters and it is good news that she is symptom free.
Take care, Sue

Anna,
    So wonderful that you got good news about MEN 1 and that you are not having any noticeable problems. 
Your understanding and support of us is just so impressive.  It is amazing to me that you can keep all of our stories clear. 
      Am so glad your daughter is not having any problems now. 
I still worry about my daughter and still see suggestions of MEN.

 I had horrendous mittlesmertz for years.  Still have to wonder about MEN. 

     The best to you over the holidays.  

xxx, Nancy

It's always nice to hear good news, since people often seem to disappear when news is good and only stick around when there are problems, so the bigger picture is often mislaid! As Tigerlily says, it's better that everyone can see both sides of the story, especially when it seems good news is rare,when it actually isn't. 

I'm pleased you're in the clear and go you with your perfect bloods! Your daughter may have tested positive for MEN 1, but it's good news that she doesn't have symptoms and if she did get any, would know what to do and where to get prompt help. 

All good wishes for the season to you as well. 

Love and hugs 

Brigitte xxx

Wonderful to hear you are doing so well, Anna! I guess you are one of the lucky ones. Good for you!! It is always nice to hear of success stories.

Sorry to hear about your daughter's test results, but very happy she is not suffering from it all at this point. It is rough being sick yourself, but having a sick child is so much harder on a person. I have always said I'm happy it is me suffering and not my children or grandchildren.

Again, I'm very happy you are doing so well!!

Audrey

Hi Anna,

I'm always uplifted by the good stories and it's true many people are too busy catching up on life post op to share their experience and give us all a more balanced view.

It must be hard not to worry about your daughters but at least you and they know what to be aware of and I'm guessing they will be monitored. It's really good they haven't had any problems so far and I pray that continues for the rest of their lives.

Lots of love,

Dee
xxx

I not sure how I missed this. Very happy for you Anna that you are in the clear and doing well. Keep it up. Have a Merry Christmas. Kathi

Hi Anna great news that the MRI is all clear and that you have a very mild form of MEN, I do hope this is the same for your Daughter. 
Love Amanda xxxx

Thank you Everyone for your good wishes.

It really means a lot to know that I can 'talk' to people who know how all this feels.

My fingers, toes and everything are crossed that both my daughters continue to be well, but I am also comforted by the thought that if there is any indication of problems in the future, then they will get correct prompt treatment and wont have to jump through all the hoops I, and almost everyone here, has had to do.   If my eldest daughter gets hpth in the future then she wont even have a neck scar, it will be dealt with microscopically by going under the armpit.   Medical advances continue apace!

Anna