Update.....Diagnosis..... :)

[grandmalaurie59]

Hi everyone....it is ME again! Making progress.....I DEFINATELY have a Mast Cell disease. I either have systemic Mastocytosis OR MCAD. (Mast Cell Activation disease) .....I could also have POTS because autonomic symptoms....mainly BP fluctuations, dizziness and rapid heartbeat during attacks. OR all my symptoms could be due to the Mast Cell disease.

My hematologist has referred me to Boston where the Mastocytosis/Mast Cell disease experts are. I got a call today from them. I have an appointment on Jan 28th.

If Mast Cells attack the brain.....it can cause MS like symptoms OR MS itself!
So my journey to a diagnosis is almost over.....I hope. I am hoping this specialist in Boston will be able to fit all my symptoms into ONE diagnosis!

Hugs to all!!

Laurie  oxo

[karryon55]

Hi Laurie, MCAD was something that was brought up with me. Usually a urine test over 24 or 48 hrs is carried out & can give them information "if you are having an attack" which is often step one. Do you have the lovely red face that comes with this condition?

In regards to ANS (autonomic nervous system) dysfunction or Dysautonomia there is a great information service at "dinet" as well as Dysautonomia SOS. Have you had a TTT or Tilt Table Test yet? This is the best way to assess POTS & is non invasive. I have some ANS problems mostly I have periods of Postural Hypotension, rapid changes in BP in general & I have had tachycardia for as long as I can remember. My heart rate is typically 100 bpm resting but when I stand up it can jump to 110 to 130 but not always. I have been through good & bad times in life with these problems. I have been diagnosed with sinus tachycardia which means my resting heart rate is pretty much 100 bpm or higher all the time. There usually is not a dramatic change in my heart rate on standing. In POTS the heart rate can be much lower when resting but speeds up to much when the patient stands up. Blood pooling in the limbs & such can also happen.


As you have said these symptoms can be ANS related or Mast Cell Related.
I hope you get the answers you need from Boston. If it is moving into ANS problems like POTS there are some of the best specialists in the world in the US. I heard good things about a Dr. Blair Grubb who is also a sufferer of POTS.

Best of luck & keep me updated.

Take Care

Karry.

[supermum_ms]

Laurie, I was so glad to see your smiling face pop up, i've been wondering about you..............but hell girl what does this dx mean?

You've been put through enough already, part of me wants and hopes this dx is the end of the dx road but i'd rather it was Laurie syndrome that something bad bad if that makes any sense.

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

[maxthecat43]

What does this mean, in terms of treatment?  It sounds pretty scary!