Anyone familiar with MAST cell activation syndrome?

@sundance6 so you think you might have MCAS? Have you talked with your doctor about the possibility of having MCAS? The following article is from an allergy journal.
https://www.aaaai.org/conditions-treatments/related-conditions/mcas#:~:text=MCAS%20is%20a%20condition%20in,are%20released%20during%20those%20episodes.
It has a list of symptoms so you may want to compare yours with the list. You can also find more discussions on MCAS by clicking on the blue ‘autoimmune diseases’ above. It will take you to a page with a search box. You can type in Mast cell activation syndrome. The search will bring up many discussions that you check out.
What symptoms do you have that make you think of MCAS?

Thanks Becky! I remember you from several years back! I am the one that suffered STAGE IV colon cancer 25 years ago. In which I was given a death sentance from a Bad reaction to chemo. I helped others in the years gone by dealing with cancer. More recently, 6 years ago I came down with a mysterious diI finally came up after much research that it could be Lyme! Back then doctors in New Mexico said it was impossible in New Mexico!
In researching Lyme I found several PGA Touring Golfers, Tim Herron, Jimmy Walker and others that had picked up Lyme. In our correspondence we came to a conclusion that golf courses spare the fairways but not the rough.
I had a TBI a year ago from a fall, so I had not been on Mayo Connect. Felling better now.
So I'm back.
My Lyme started with severe Headaches, muscle, soreness, Fatigue, dizziness plus many other symptoms.
It is difficult now after the TBI that many symptoms are similar. Things seem to have gotten worse over the years! Severe muscle loss, pulling tendons, severe dizziness, brain fog, loss of balance, Serve. Fatigue, trouble walking. I'm 77 and I was in perfect health until 6 years ago.
My PCP and I came up with the only thing to stop the most painful symptoms Headaches. Oxycodone is the only thing that stop them.
If you have any guidance as to start again or any ideas I would be happy to hear!
THANKS,
SUNDANCE aka RB

@sundance6 I’ve never met you, except through Connect, but I do like your ‘name’ Sundance!
You might make a list of all your current symptoms and then ask your PCP for a referral to a rheumatologist. They are the specialists in autoimmune diseases.
Good luck and keep me informed!

Thanks Becky! I have seen many many different doctors over the last six years! I do subscribe to the LYME New. Today there was an article from a doctor who treats Lyme patients. She has found a drug that seems to work on some patients. It is called Methylene Blue. Do you know anything about it? I just read it so I haven't researched it yet! Let me know if you know about it or where I can go to find more information!
THANKS,
SUNDANCE aka RB

Hi Sundance. I would strongly encourage you to see a rheumatologist to check for autoimmune diseases as many of your symptoms are suggestive. Also, a neurologist to rule out CIDP, a peripheral neuropathy that causes gait imbalance, muscle weakness and muscle wasting, dizziness, and numbness in feet, toes, legs and sometimes hands. I am 74 and have all the symptoms you have. It took about 12 years for someone to think of CIDP and I am partially wheelchair bound now. Early diagnosis is crucial and it’s treatable. Good luck with your search for answers!

Thank your help! What is CIDP? i will research it also. Is there anything that can help? I have been chasing "LYME DISEASE" and everything that goes along with it for over 6 years! I just happen to read the article on Mast cell and it peaked my interest.
I have been very active for 70 before I came down with what ever this is! Have played golf for 65 years! The same with Fly Fishing, Have skied for over 50! I can't do any of it anymore!
As you know how frustrating it can be!
Please give more info if you can on both!
Many Thanks, SUNDANCE aka RB😊😊

@sundance6, here are related discussions for MCAS or mast cell activation syndrome:
- Mast Cell Activation Syndrome: What treatments help you?: https://connect.mayoclinic.org/discussion/mast-cell-activation-syndrome/
- Mast Cell Disease: how does one get an accurate diagnosis?: https://connect.mayoclinic.org/discussion/mast-cell-disease/
- Mast Activation Syndrome and Osteoporosis: https://connect.mayoclinic.org/discussion/mast-activation-syndrome-and-osteoporosis/

See more here: https://connect.mayoclinic.org/search/discussions/?search=MCAS

Silk, Thanks again for your information I have never heard of either before! I am gathering information on both of those plus anything else that may fall into those symptoms. Whatever I have has progressively gotten worse over the 6 years i have had . Really having trouble walking! Fatigue has been a part of my symptoms for the whole time.
Any other suggestions from anyone is greatly appreciated!
THANKS! SUNDANCE aka RB

CIDP stands for chronic inflammatory demyelinating polyradiculopthy, which is why it’s always abbreviated, ha. It’s an autoimmune disorder that attacks the peripheral nervous system, all your nerves minus brain and spinal cord. Since nerves control your muscles, the muscles are affected too. Abnormal antibodies damage the myelin sheath of the nerves and that in turn prevents the muscles from functioning properly. The nerve symptoms are numbness, tingling, pins and needles and sometimes pain, usually in the toes, feet and eventually up the legs. The muscle symptoms include weakness and wasting away of the muscles, usually worse in lower than upper extremities. Fatigue is a prominent symptom as well as dizziness and being off balance. A neurologist diagnoses it. It’s similar to Multiple Sclerosis which destroys the myelin sheaths in the brain and spinal cord. It’s relatively rare and many Drs know nothing of it. It’s not curable but is treatable to prevent worsening of the condition. Mast cells have to do with allergic reactions and I think your symptoms are much more in keeping with an autoimmune disorder. I would see a neurologist and rheumatologist both to investigate these possibilities. I hope you can get appointments soon and say when asking that it’s urgent, that you can barely walk and are afraid you will fall and break your hip or something. These diseases are insidious and continue to do damage over time, so it is essential to get it figured out and remedies started asap.