MCAS? Me Too!

Since being diagnosed with Parkinson’s in 2016, I have spoken at numerous workshops and support groups and have sat across many a table at Starbucks from someone newly diagnosed and completely overwhelmed.  Something special happens when I mention a symptom or feeling that they recognize. Often it is something odd, like the big toe on my left foot that always wants to stick up.  It is that special moment when they usually exclaim, sometimes with tears in their eyes, “Me too! I thought I was the only one!”  We now have a common bond, and they know they aren’t alone.  I recently had my own “me too” moment and although it was with someone on a recorded podcast, it was no less special. I heard Michelle Shapiro RD describe what I was feeling, and I was no longer alone.  

This could be a very long story so here are the highlights:

In 2016 I was diagnosed with Young Onset Tremor Dominant Parkinson’s Disease at age                                                                            54. Until 2023, I was proactive with lifestyle management, heavy exercise, and very  active in the PD  community. Parkinson’s was progressing but slowly. Having to take meds more often.  By 2024, my Parkinson’s symptoms were not managed as well. More off time. Got Covid in Dec.                                                      

In January, 2025 I  started Neuro-feedback for anxiety that has worsened over time. I signed up for an intense Boot Camp class also.  By April, I completed 13 sessions of Neuro-feedback which was helpful. My anxiety was manageable. I had to drop Boot Camp class.  I was getting winded, couldn't keep up, didn't feel safe and wanted to avoid a fall.  I was getting pins and needles in my hands and feet also. I  continued exercise in an easier class. In May,  pins and needles were now happening randomly all over... nose to toes and I had  zero tolerance for heat although that has been going on for a while. Internal tremors would start randomly after food but no consistent pattern, and the tremors did  not respond to   more carbidopa/levodopa.                                                               

In June, I started the Vyalev subcutaneous pump (liquid carbidopa/levodopa).  I had to visit the dermatologist early on due to medication pooling under my skin and causing a reaction.                                                                                                                    Antihistamines  were recommended and were helpful. Using the pump was challenging with skin issues,  but  it worked much better than oral meds at controlling my off time. I was willing to put up with the inconvenience.  

I was now getting pins and needles, internal tremors,  with acute anxiety, racing heart, sweating happening after eating, hot showers, exercise, stress                                                                                                                                                                                                                      

September was a horrible month.  We had a big annual fundraiser that was a lot of work. I lost a friend to cancer,  another was diagnosed with cancer, and  another was  in the ICU. I was  not sleeping well.

In October, my symptoms worsened greatly after changing my diet to a low glycemic diet recommended by my (now former) Endocrinologist. I (added walnuts, cashews,  almonds, spinach, yogurt…)                                                                                                                                                                                                               

Symptoms included internal tremors, numbness and tingling over full body, racing heart, sweating,  and now full blown panic attacks.                                                                                                                                                                    

I kept telling my doctors, this does NOT feel  like Parkinson’s.  Once you have Parkinson's, most doctors think any new symptom is a progression of the disease.  It's just the way it is.

I ended up in the ER in October and they said all labs and brain MRI were “perfect.”  My Endocrinologist's office was supposed to call the next day and get me an appt that week.  When they hadn't called by the afternoon, I called them.  They said they would have to squeeze me in and would call me back.  They did...a week later.  I never saw that doctor again.  He was my endocrinologist for more than 20 years.

My Movement Disorder Specialist believed that  something was wrong but she wasn't sure what.  She started me on a medication for anxiety and referred me to a concierge doc who does precision medicine and functional testing. My first visit was over 2 hours long.  Someone finally had the time to listen.  Histamine Intolerance?  MCAS? Mold exposure?  I have been seeing a Naturopath but much of this was a new world to me.

I had tons of labs done.  Got treated for a parasite- yuck, and the antibiotic was brutal on my gut.                                                                                                               Changed my diet to a very restrictive low histamine, gluten free diet that has  helped tremendously.                                                                                                                         

I requested a mold test and tested positive for three kinds of mold- yuck, spent thousands having my house inspected for mold, and having my bathroom  remediated.                                                                                                                They found a patch of dry mold behind one wall.  We spent a couple thousand more on HVAC upgrades to ensure air in the house was cleaner.                                                                                                                                                                                                I tried to take the recommended supplements ($300) to get the mold out of my system, but I had a bad reaction to them.  Still can't take them.                                                                                        

By 2026 I no longer was having panic attacks!  In early March i got so excited because I ate half a banana with no reaction. Who knew I would miss bananas so much? And don't even mention peanut butter.  I may never have it again.  

Currently, my blood pressure is very low, possibly from Parkinsons, so I have added yet another medication, wear lovely compression socks, drink electrolytes that taste like the ocean and I often sit with my feet up on the wall because it helps the pins and needles and internal tremors to lessen.                                                                              

At the end of March, I had to fly to the east coast to handle a  family crisis.  It was six days of high stress and I setback my progress significantly.  No more bananas for a while.    I was not back to square one but it feels like I'm not far from it.                                                                                                                                                                                                             

We still need to spend tens of thousands getting  the bathroom  remodeled.  It will be stressful so no hurry on it.                                                                                                       

My current diet still very restricted due to symptom flares. I am exercising 4-5 times a week but nothing intense and I'm trying a new medication that may take a while to work.  I am                                                                                                   starting on a very low dose and titrating up as tolerated.  Patience is key.

I have been feeling very discouraged since this setback.  It seemed like  there was no end to this...until I found Michelle Shapiro RD on YouTube.  When she told her story, I said, "Me Too!"  This was happening to someone else and she got through it!  I only need to know about one person making it. That gives me enough hope to get through this.  

Thank you Michelle and keep up the good work.  I think there are tons of us out there with MCAS undiagnosed.