Finally... A definite diagnosis x 2!!

[grandmalaurie59]

Hi everyone! Remember me??

I just got back from my trip to Boston to see the Specialist there. I was there 6 weeks! I stayed with my cousin.

........I had so many MS symptoms and was even on Copaxone for a while. After finally going to the Cleveland Clinic in hopes of finding a definite diagnosis for my many strange and increasing symptoms.... I was referred to Dr Castells at Brigham and women's hospital in Boston for evaluation. One test result that a doctor ordered at the Cleveland clinic started me on the road to getting diagnosed... Finally!  That was a tryptase blood test. I did have every 'MS' test (which came back negative) along with many many other tests to rule out everything from Celiacs to carcinoid syndrome ect..............

I was diagnosed by positive/elevated test results  (IgE, prostaglandin F2 urine, and  tryptase blood tests) to have systemic mast cell disease known as MCAS or Mast Cell Activation Syndrome.
               ...................PLUS.........
Polymyalgia Rheumatica by symptoms and elevated C-Reactive protein blood test and that prednisone took away my severe pain and stiffness.

MCAS can imitate many diseases including MS. It all depends what organs are being attacked by the Mast Cells. I have too many mast cells and they are behaving badly!

I will be put on cyclosporine and followed closely by my PCP along with the many antihistamines I already take. I also have to be very careful since my tests show I am prone to Anaphalaxis....... Which apparently I have had many episodes according to the doctor when I went over my symptoms and 'attacks' she gave me an emergency paper to keep in my purse, to inform doctors on how I should be medically treated in an emergency OR in having procedures done. I also MUST get a cooling vest. I can not get warm or go out in the sun! :-(  ( and I live in south Florida one block from the beach)

Oh, Dr Castells said, because of my severe symptoms I will have no problem qualifying for disability.... My hearing should be coming up soon. It has been one year since my lawyer filed. (I was turned down twice)

So that is about it! It has been a very long hard road, but thanks to you all, and others I didn't give up until I got an answer. .... And treatment!!!  :-)  No cure though...but I am ok with that at least I now KNOW what I am dealing with and what to expect ect!!!!   :-)

Laurie. Oxo

[candy158]

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

[Lulu54]

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

[Guitar_grrrl]

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!

[rendean]

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

[grandmalaurie59]

Thanks JJ!!!!  Oxo

Big hugs back to you!

Laurie

[supermum_ms]

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

[grandmalaurie59]

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

[karryon55]

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.

[HVAC]

That is a diagnosis I have never even heard of. I hope you get disability.

Alex

[Maracamama]

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

[doublevision1]

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.