brethor9

Sue; That is interesting! when I first became ill 5 years ago I was tested for Celiac and the anti-gliadin antibodies came back slightly elevated and I was told by one specialist that it was Celiac but then told by another that because it was only a slight elevation it was irrelevant. 3 years after that I had a colonoscopy and endoscopy which showed the reactive lymphoid aggregates and lots of inflammation but the biopsies were negative. I have had several other specialists say it still could be Celiac so I finally went gluten free anyway and have definately noticed a difference.

Bren

Sue; I am like you....constantly fight with gastritis (dealing with a very bad flare now ....) and on my last scope the pathology showed large reactive lymphoid aggregates but not H Pylori....my MCAS specialist feels this symptom is likely tied in to the mast cell issues....either way it is NOT fun!!

Bren

Hang in there Naomi....don't give up the fight! ......Big hugs

Bren

Me too!! Mine is just like how Katybug described....stroke and a heart attack at the same time......it feels sooo awful and I can't believe I can feel that on the edge and not have anyone realize it by looking at me...... I always think wow with all of these symptoms how would I ever know if it actually was a heart attack or stroke??...scary

Hi Issie

Issie WOW good for you!! I just started up again on the gastrocrom the last couple days after fighting off a vicious cold. So far nothing but headaches and stomach upset but I am game to continue on I know it gets worse before it gets better...I was warned lol! I have also noticed a difference just in taking the H1 and H2 and hope the gastrocrom helps even more....aspirin is a hit or miss for me...sometimes it helps and other episodes makes it worse. I find breaking my doses down more throughout the day is helping me even more....probably because it keeps everything level maybe? working in the medical establishment I was told you should never chase pain and it is better to slightly overlap dose times....I am thinking it can be applied the same for mast cell reactions? to always stay on top of it?? if that makes sense

Bren

yes me too! my specialist's say my case is very complicated and challenging also...I was just recently diagnosed with MCAS and likely EDS type 3 on top of POTS/dysautonomia....like Issie I have just recently started the MCAS protocol.......

Bren

yes me too....just getting over a really bad cold and my POTS has been really bad again

I only take a .025mg of florinef daily and it helps me.....if I take anything over that I get worse head pressure and a headache...

Bren

too much adrenaline can cause the same symptoms....as having low BP and low blood volume......especially with Hyper Pots patients

I was watching a program about this theory awhile also......its a neat concept and imagine all the drugs you wouldn't have to trial

Bren

and why do they ask you why you are there to see them after you explained it all when you made the appointment??? I feel like saying go ask your assistant or read the darn chart lol!

Issie; so does all this explain why on the days I am having massive adrenaline issues caffeine actually calms my system down? I have never been able to figure that out....but on the days I am not and drink caffeine I get really symptomatic...weird

Bren

Glad to hear you are on an upswing Anoj I can totally sympathize with the frustrations you experience...I have been dealing with this for 5 years and still find myself explaining on a daily basis why I am so sick and cannot just be normal even though I look normal. Now when someone says oh you look good...I just say its the meds I am on not because I am actually better. They should call it the stalking illness....because even on my good days I am always looking over my shoulder (so to speak) waiting for it to creep on me lol....... hang in there and just try to enjoy your remission and don't let the negativity get to you...and remember you have people here who will always understand what you are going through

Bren

me too! I have to drink tap water at room temperature or I get sick........

I have noticed this too since the onset of my illness...but I also had a partial hysterectomy in 2008 so I think its most likely related to hormones. Luckily mine is super thick and I can wear it super short.....my hubby actually hates long hair on me...thank god

yes me too!!! I hate drinking any fluids and feel worse after. I have actually completely lost the urge to drink. My specialist says my thirst receptor does not signal my body to drink properly because of chronic dehydration. My body is used to not drinking now...this was the reason we started IV infusions but I have had bad reactions to them so all I can do is force myself to drink

yes I also get episodes of the shakes or tremors....I actually went through a very severe episode recently after getting a saline infusion of all things! The nurse took a video and it is posted here on the forum under 'Scary Pots Attack' it was really freaky...not sure if it is similar to what your son is experiencing? my auto specialist was not sure what caused it but after being diagnosed with MCAS last week that specialist thought it was a reaction.....

Thanks Hippy yeah it seems I just get one stabalized and then get a new one....you just can't win with this illness

Hang in there Naomi ((((((huge hugs))))) yes I have been where you are and still have episodes.....the ones that scare me are my heart suddenly drops, my legs get really weak, lightheaded...it actually feels like my heart isn't pumping right and that is a new symptom I haven't had before. It gets so frustrating being told what we have isnt going to kill us but I swear sometimes it might have you been to your doc to get checked over? you could have something not even related to your POTS like a virus or something......

Bren

Naomi: The immunologist I consulted with last week suspects that it is likely type 3; I have hypermoblie joints in my hands, feet, hips and spine (I am always throwing my back out over the smallest stupid things).........translucent, velvety smooth skin, very elastic skin, easy bruising, scoliosis, problems with anesthetics, gastro issues, joint and muscle pain etc...... and he said POTS or autonomic dysfunction can be the result of MCAS and EDS....so in my case we think the MCAS and EDS is causing the autonomic dysfunction

Rox: I was diagnosed with POTS/Dysautonomia long before my new diagnosis....my immunologist explained the 3 syndromes are usually linked together....you can have just POTS but if you have MCAS.....you very likely have EDS of some form too. He told me it is usually life long and a long road to find the right treatment.

I agree with Issie...now with my new diagnosis; obviously I wont be cured any time soon so I am just trying to stabalize my symptoms. I also have issues with compression....can only do it for a few hours then have to take it off because I start to ache.

Issie; I think I may be opposite of you....I need mostly vasoconstriction.....the cold weather we are having now in Canada is such a blessing (except for the Raynauds now kicking in ......but I also think that certain areas of my body need to vasodilate at different times or I get pain; headaches, leg cramps...does that make sense?

Hi All

So last week I was seen by an immunologist who confirmed at long last that I likely have MCAS....still have to have a few more tests but he has already started me on the drug treatment protocol. Surprisingly, he also stated he thinks I have EDS type 3? that would explain my joint issues, stretchy, translucent skin and ropey veins, etc.

I would love to hear from any EDS people as I have no idea what this syndrome is? connective tissue disorder is all he told me.....

Also, Is anyone taking ketotifen for their mast cell treatment? I would love to hear the pros and cons? I know it is a mast cell stabalizer...

Would appreciate any guidance and input...

Thanks

Bren

Hi Pumpkin

Sorry to hear you are struggling (hug)....I can definately relate to the bad fatigue and loss of energy right now....for me it comes in cycles. You may just be having a bad flare right now and really need some extra rest. Sometimes the worst thing you can do with POTS is to keep trying to push through the symptoms.....maybe push your doc to run some blood tests like iron, vitamin D, magnesium, B 12...these can all cause problems with fatigue. Also what is your sleep cycle like? alot of us have issues with sleep from the excess adrenaline, pain, tachy, bp swings...that could also be causing your fatigue. For me personally, I always have relapses after any kind of trauma that land in me in bed for a week or more...and the heat is killer our systems are just so fragile I guess.....feel better soon.....

Bren

good article bananas! although I have to admit the longer I have this illness it is becoming harder and harder for me to be graceful with people giving me unsolicited advice...like we don't struggle enough with the symptoms and then have to deal with all the back talk.....ugggh ;(

me too! like Naomi it is my worst symptom and I have never been able to get rid of it yet