Update....NOT closer to a diagnosis :(

[grandmalaurie59]

Hi everyone....it is me AGAIN! I said I would write back when I got the results of all my tests from the Cleveland clinic.....

NORMAL....except I have to go for an endoscopy to check out my stomach and why I now have severe heartburn.

The last 3 doctors told me to go back to my MS specialist......I have an appointment this Tuesday the 17th......that I made a few months ago.

I am still getting an eczema rash and having allergic reactions to things BUT I don't have allergies or anything autoimmune supposedly. My neuro symptoms are there....some days worse than others. I still get flushing but it seems to be calming down.

I am in a LOT of pain especially in my hip and shoulder joints and lots of muscle pain and spasms. I have also developed a 'buzzing-like' sensation in my left foot that has been there pretty constantly the last few days. I am still extremely heat intolerant and can't do much without feeling like I am going to pass out. I could go on and on....but I will spare you all!  

I just CAN'T believe after all those tests everything is normal!! I am thankful, but then why am I still so 'sick'??

I just wanted to let you all know the latest....if I learn anything interesting from my MS doc I will let you know.

Laurie :)

[grandmalaurie59]

Hi Ren,

Yes!!, the endocrinologist is the one who originally tested me for mastocytosis/mast cell disorder and the test (tryptase came back high) He told me I had mastocytosis or a Mast Cell disorder then he sent me to the hematologist for the bone marrow biopsy.

The problem is, like MS, you have to meet certain criteria to be positively diagnosed.....

I have most of the symptoms of mastocytosis with added neurological symptoms which can happen when  activated mast cells affect the brain. PLUS I have an elevated tryptase of over 20...3 times....which 95% of the time is a definite marker for mastocytosis! BUT you must also have a positive bone marrow result OR other positive tests. I just have the tryptase which definitely means my Mast cells are NOT happy and doing something they are not supposed to be doing! When you, like me, fall outside the box you have to go to a Mast Cell Specialist...I guess like an MS specialist! lol

So here I am outside 2 boxes!! MS and Mast Cell ....which one is it?? both? none? :/

Why does my body have to be so difficult!!??? I am functionally disabled yet the docs can't figure out what is causing the most serious symptoms. Basically I have autonomic dysfunction...but why??

How are YOU doing Ren?? I know you have had a long hard road! :(

Hugs,

Laurie  oxo

[rendean]

Sorry to hear of all the testing and still no answers. I know the nephrologist/endocrinologist I go to diagnosed a patient of his (thin walls in his office) with Mast Cell disorder. Have you seen an endocrinologist? You may have already but since I've been AWOL I wasn't sure.

Hang in there. You're one tough cookie! Will be keeping you in my thoughts!

Hugs,
Ren

[grandmalaurie59]

Thanks girls! I am beyond frustrated! Thanks for the empathy!

Guess what....I get a message from a person on the mastocytosis forum (another site) and she tells me as long as I have a consistant blood tryptase level over 20 I have to have a Mast Cell disorder. She said I would have to go to a Mast Cell Center to get diagnosed since most docs know anything about this disease . That is how she was diagnosed and treated. Of course there are no centers in my state!! :(

I am still going to my MS doc on Tues and tell him all about my negative tests and positive tryptase and see if he has ever heard of it. Maybe he will know of someone I could go to.

I will keep you all posted....(I hope this long story has an ending!)

Hugs!

Laurie oxo

[maxthecat43]

How frustrating for you!  I remember those days all too well...

(((Hugs,)))
Tammy

[SarahL2491]

well, I think you win the unwanted prize of having had the most doctors.  
At this point, it has to be something obvious that everyone is overlooking.  Like they are so deep into finding something obscure, they are not seeing what should be obvious.  They are trying too hard!

You also win the prize for hanging in there, I think I would have left the room screaming by now!

Thanks for keeping us posted, we've wondered how you were doing and if you wind up back here with us, we've missed you, and at least you would have a Dx..........

Hugs
Sarah

[supermum_ms]

Hey babe,

Not sure what to say actually, surprised and confused that everything came back normal. I don't know if it's good news, if it means MS is back at the top of your list or bad news because MS is also still being questioned. Does this basically add up to everyone scratching their collective heads? Sorry if i'm missing the obvious, (its been a bad week) sending hugs to you from across the seas!

HUGS...........JJ