I am glad and sorry that you got THE NEWS !!! Sometimes it is just the answer we want heh ?? The road is long and arduous and it is good to know that we are not making these things happen.
I glad for you, and I hope your new regiment of drugs will work quickly for you.
It has been fun getting to know you, please keep popping in, it is always a pleasure to see you smiley face.
Take care, my friend,
Candy
xo
Laurie, thanks to you for coming back and giving us that news- it is so important for others to understand it isn't always MS, even when it looks so much ike it.
I'm sorry to hear of this diagnosis but you are right - at least now you have the answers and can more on to living with this the best ways possible.
please don't be a stranger - feel free to stop by with updates anytime! hugs, Laura
Wow, Laurie! What a road you've traveled! I just read JJ's link, and, just... wow! Well, I'm sorry you've been diagnosed with this, but just like being diagnosed with MS or any other chronic disease, you now know your nemesis' name, and can move onward from there. It's funny, too, that Interferons and Cladribine are used to treat it. Cladribine has been used off-label for MS, and of course, we all know about Ifn.
Well, have as much fun as you can, anyway. I hope MCAS doesn't put too big a crimp in your life. I'm so glad you're living with an Epi-Pen on you!
Dear Laurie,
So glad to hear you finally have answers to your symptoms AND a treatment plan! Your perseverance is to be admired!
Best wishes on your disability hearing! Hope this time is clincher!!
Many hugs,
Ren
Thanks JJ!!!! Oxo
Big hugs back to you!
Laurie
OMG Laurie you've finally got out of limbo, you've been on quite a complicated journey and it's so good to hear from you!!
Knowing nothing about MCAS I did my usual and went hunting for information to pass on to your that might be of some use, and this was the most comprehensive and detailed i could find.....
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
Big big hugs to you babe :D
Cheers..........JJ
Thanks every one! I just hope I will be able to help someone else who was stuck in limbo from my 'story' .
Yes Alex this is very rare.... That is why I had to go to Boston to the dr who specializes in it!
Yes Karry, I already carry an epi pen since July when symptoms sent me to the ER. When the Boston doc heard I had not used it yet after hearing the symptoms of my attacks, she got very upset with me. I will be more careful!
Also, thank you carry about the cyclosporine heads up on blood pressure. My BP is all over the place.... Too high and way too low.... My autonomic nervous system has also been effected.
I am sorry you are still waiting for a dx Laura!
Laurie
I am so glad you have some answers Laurie.
I have been on Cyclosporine many times & other than making me very susceptible to catching things it also upped my blood pressure. I normally have lower end blood pressure so this was strange for me. I ended up taking a diuretic to bring it down.
I think it would be wise to carry an Epi pen if you have a lot of anaphylaxis. Also ensuring people who are with you know how to use them because more often than not people place it around the wrong way & they get the medicine lol. It's just a good safety net & they can be easily bought from a docs prescription.
Hopefully things will be much easier now you know what you are dealing with.
Hugs,
Karry.
That is a diagnosis I have never even heard of. I hope you get disability.
Alex
Finally!!! It's nice to know what you're battling.
I'm not sure if your diagnosis is better or worse than having MS but at least now you can be treated properly. I'm still going through testing and waiting for my diagnosis.
I wish you all the best and hope that you feel better soon.
Laura
Thanks for the update Laurie. It's so important to persevere and not give up. You're a great example of this. I'm glad you finally have an answer and that your chronic conditions are treatable.