brethor9

Thanks Michelle! I have been afraid to try it for fear of more side effects....things are hard enough Bren

Hi Linda I was told by Dr. Afrin that normal tryptase does not mean you do not have MCAS there are alot of variables involved in a diagnosis. Also I was told by the president of the Mastocytosis Forum that any tryptase above 0 is abnormal.....mine was 4.2 but I have many other symptoms that match including severe forms of urticaria, dermographatism, flushing, etc.....tryptase is just a small piece of the puzzle. If you type in Dr. Lawrence Afrin in your search engine his website should come up with email contact information. Good luck and dont give up Bren

I live in Canada and just got prescribed Domperidone.....havent tried it yet as I am not sure what the drug is used for? I have been having serious bloating, pain and just no movement in my GI...is it supposed to help with all this? are there any side effects? My Dr. didn't really say much just prescribed it at the end of my follow up appointment..... Thanks! Bren

I live in Canada and just got prescribed Domperidone.....havent tried it yet as I am not sure what the effects are for? I have been having serious bloating, pain and just no movement in my GI...is it supposed to help with all this? are there any side effects? sorry you all have such a hard time getting it Bren

Thanks guys for all the great input!!! something to maybe review with my auto dr when I see him in the summer Issie...I have had issues with endo and likely have MCAS we are still working through the testing. In Canada its almost nonexistent.....probably due to so many cuts to OHIP and its such a new and emerging illness....interesting that you mention they can be a trilogy....the plot deepens lol! Bren

My POTS consistently got worse after each surgery. Had 3 epidurals, local and general with my pregnancy...not too long after symptoms started creeping in...I really started to get worse after my hysterectomy a few years later and then had complete system crash after a gallbladder surgery in Feb 2011....since then I just cant seem to get on top of it I did have 1 neurologist mention the link to anasthetic Bren

yep me too! I get alot of numbness in my chin and face...just randomly out of the blue......I have also just recently lost my sense of smell for no reason....I figure it is neuropathy related or MCAS related as benadryl does help the numbness Bren

great article!! this may be my new handout

Hi all I am wondering about EDS symptoms and what people suffer with them? The reason I ask is over the last several years it has been mentioned to me many times by doctors and nurses that I have very odd veins and skin. Just yesterday I started with my saline infusions and it took 3 nurses almost 2 hours to access my veins. They said it had nothing to do with hydration but was because a) I have very few veins in my hands or arms they are extremely tiny and collapse when they are barely touched and they roll away? c) the nurse mentioned I have extremely soft and transclucent skin. I remember reading somewhere that the soft shiny skin can be a sign of EDS? I am not very dexterous nor double jointed etc....but I do know there are different classes of EDS....anyone have any input? I would appreciate your thoughts? Thanks Bren

Happy for you Jangle!! wish I could exercise.....tried that last week and now I have been having one of my worst flares ever even on my meds...thinking exercise just wont work with my mast cell issues right now....so frustrating how exercise works for some but can make others sicker....just dont get it! Bren

In my experience trying to push through when you start to hit that wall just makes this illness so much worse.....for almost 4 years I kept trying to persevere and work until my body finally made the decision for me last May when I ended up hospitalized and had full system crash ..... I understand completely where you are coming from....I had a very high stress job in a cancer clinic and I also could never say no and knew I had people always depending on me....its why I held out for so long.....but I also ignored all the warning signs my body was trying to give me. In hindsight I wish I had have listened I may not have ended up as sick as I am and now completely disabled........ I guess my advice is try not to ignore your body...if you are having more bad days then good it may be time to give your body a break to rest ...... your health and well being is important!!! Big hugs! Bren

Hi all Just wondering? For almost 3 weeks I have been dealing with complete loss of smell. It literally just came on suddenly.....I have had no cold, infection or anything that could explain it. I am still able to taste which makes it even odder. If it was sinus related or allergies would it not affect your taste also? The only thing I can think is it could be a medication side effect; I am currently taking florinef, clariten, zantac,lorazepam, magnesium and a beta blocker. The only medication that I have started in the last couple months is the beta blocker. Every other med I have been taking for over a year. Anyone have any ideas? My GP isn't much help.......says its all POTS..... Thanks Bren

me too! I am actually going through a severe relapse I suspect brought on by stopping my florinef for a week. In the last 3 days I feel like I am right back to where I started 8 months ago massive head pressure, lightheadedness, drunken feeling.....started florinef again hoping it kicks in and these horrid symptoms go away again I definately think there is more to Florinef and how it interacts with the body than what dr's tell us.......

any perfume with vanilla is usually good......not sure if you have The Body Shop where you live but you can create your own perfume at their store and you can put in as much or as little scent oil as you want. They have everything from strawberry, satsuma, ocean scents to vanilla....its great Bren

If I am not mistaken there are 1000 cc's in a litre of saline which would mean you are getting 1/4 bag the first week then half a bag the second week.....I receive a full litre every 2 weeks which would work out to 500 cc's a week (half a bag)......I assume you use the same size bags as in Canada....not sure if that helps? hope you get some relief with it! Bren

Christy...I finally just started telling them I have a nervous system illness that effects my kidneys and I cant retain fluids normally

yeah dizziness has always been my most crippling symptom.....yes it does help with the BP and dizziness for awhile....the reason why my dr started me so low is because they have to watch your heart.....too much fluid too fast can affect your heart so they have to go slow and he said I still have to orally hydrate and stay on the florinef. I am really bad for fluids....on my worst days I may only urinate 3-4 times for the day....not good...therefore the infusions...it is worth a try Naomi its just saline it really cant hurt you and there are really no bad side effects except peeing more often lol!!!

yeah it is short lived....basically once you pee it all out it wears off so I am not sure in the long run how much it will pay off....but atleast it gives me a couple days where I am not gagging to death from trying to force feed myself fluids...blah.....I am never thirsty! my dr hopes over time it will help retrain my body to want to drink normally...who knows? and apparently it does hydrate you differently because it is at a cellular level.....every nurse who comes in to do it keeps asking me when my last chemo was??? getting tired of explaining POTS they just look at me like I am crazy and cant understand why they have to hydrate me ;( be prepared for a bit of attitude

I am a tiny dose person also likely due to the mast cell stuff and POTS....everything I take is below childrens dose....my son takes a higher dose of his beta blocker than I do lol! (and he is only 9)...my motto is start slow and stay low....it works for me......my pharmacist told me recently patients like us literally just need a whiff of meds to be helpful and sometimes that can even be too much...all trial and error I guess

Hi Naomi I get 1 litre of saline over 1 to 3hrs every 2 weeks right now.....my dr is monitoring and will alter based on how I respond....hope that helps! oh and the home care nurse comes to my home and does it.....not sure if you have homecare but if you do you should get that written on the script also. Good luck! Bren

I was insanely active before getting this illness!! If anything I think the fact that I was doing TOO much led to this illness.....think I stressed the system too much and it just couldnt cope with it anymore Bren

my mast cell meds have really seemed to take the edge off of the temp issues....especially the massive internal cold spells Bren

Hey Tuesday! I also take Florinef with Clariten and have never experienced any issues with taking the combo; although everyone is different.....antihistamines can be iffy sometimes it just takes a lot of trial and error to find the right one Bren

mast cell illness does not just involve histamine there are over 200 receptors that could be setting off the mast cells making them twitchy (as my specialist says) ie heparin, leukotrines etc so just because you dont have high histamine levels it does not mean you are not having problems with the other receptors. Also I was told by a mast cell doctor that any elevated tryptase can be indicative of MCAS with clinical symptoms. Unfortunately testing is very expensive and very difficult to get done so I believe thats why so many with mast cell issues are not getting proper diagnosis. I for one do not need a factual clinical diagnosis to know I have mast cell issues...I have had an oncologist and dermatologist confirm I have mast cell issues and I have overwhelming symptoms including several forms of urticaria, severe dermographatism, large lymphoid aggregates in the intestines (very often a sign of mast cell) etc. Just because an illness cant be officially diagnosed to due funding issues, testing issues or knowledgeable doctors it doesnt mean it doesnt exist

Rissy I am the same....each time I have to be on antibiotics (I get frequent sinus infections) I always find my POTS symptoms are better....I am only able to take amoxicillian due to allergies...but I do find it strange and wonder what the connection is?