brethor9

Hi all So for the last little bit I have really been struggling with some new symptoms......rashes, head pressure, numbing of chin and face, pain in neck veins, etc......just in the last couple of days I have noticed these little tiny tiny red dots all over my body....I think its petechiae...anyone ever had this and know what causes it? I see my auto specialist thursday and will ask about it...my internist thinks I could have MCAD could this be related? Thanks Bren

not sure why...but my Vitamin D is always low......not sure the exact amount but it is always chronically low...and I ingest a ton of dairy products

Hi Sue Your life could be the parallel of mine.....reading your story about how your family treats your illness made me cry because its exactly how my family has dealt with mine. Luckily my DH and his family have been great! I have stopped trying to get comfort my family and instead take it from the ones who honestly want to give it! It makes me very sad and bitter that things are that way but for whatever reason thats how my family is...unless its cancer or something they have heard of its not a genuine illness despite all the specialists and confirmed diagnoses.......it hasn't made one difference in how my family looks at it and probably never will.....and frankly I am done caring what they think! Bren

I am the same.....feel much better when in the car....hubby says its because my nervous system is distracted and more focused on the car ride....too bad we couldnt just drive around forever Bren

yep me too! I have given up saying POTS....now I just tell everyone I have an autonomic nervous system illness....they actually seem to take that alot more seriously....if they ask for further elaboration I explain my ANS is not regulating properly and therefore the systems it controls are malfunctioning which causes me to be very ill I seem to be getting more respect with this description Bren

Hi All Just recently my internist has mentioned he thinks I may be suffering from Mast Cell Disorder along with POTS...I am still waiting to have testing done. I have done a little research but am confused about the rash symptoms? I have had a prickly rash (looks like small pimples or heat rash plus some larger brownish red spots) all over my back and torso for over 2 weeks...(in fact it was this that tipped my internist off) it is not going away is it normal for mast cell to produce a rash every day? and not go away?? will it go away with treatment? it is very itchy also. The other thing I have noticed is if I scratch my skin even in the slightest it turns bright red and raises and takes along time to go away ( I can practically write my name and have it show lol!) Would love any input....the rash is driving me bonkers!! Bren

yes I would get flushing and severe leg cramps and horrible congestion any time I would ingest any type of alcohol....I actually stopped drinking it long before my diagnosis because of the side effects....I was never sure what caused it Bren

Hi Guys Just curious? I have been on Florinef 1/4 tab daily since May. Over the last couple months I have developed some pretty excruciating joint pain, muscle pain and muscle exhaustion all over my body.....the only med I am taking thats recently new is the Florinef. Anyone experience these symptoms while on it??? I wake up every morning feeling like someone has taken a baseball bat to my body Thanks Bren

don't die from embarassment Tinks! alot of people get that I am sure lol! personally I am grateful atleast I know it still works Bren

I am literally tearfully overwhelmed from your kind words....thank you so much! I would be so lost without all of you great people......this disorder is sooo hard and it just keeps throwing things at me as fast as I can get adjusted to the last symptoms.....my mental strength is wavering.....I am usually able to brush things off but this has me feeling so sick physically that I keep telling myself something is really wrong and different than the norm....I am praying it is just an infection....to wait 2 weeks is agony....the worst part is I worked in a cancer clinic for 4 yrs and I know we have seen cases come on hard and fast without little warning and thats where my mind keeps going.....

Hi guys So for the last couple weeks off and on I have been experiencing some strange symptoms and have been really sick! The most worrisome symptom has been chin and facial numbness which just started out of the blue over a week ago....I just got back from my dentist who is now sending me to an oral surgeon to have a special x-ray done of my jaw to rule out bone infection, nerve compression, etc. I am freaking out!!! everything I read on the internet says this is a sign of cancer.....met cancer.....and its like now he is thinking the same thing! When I called the surgeons office they can't even get me in until Nov 29th.....so now I have to worry that I may have lymphoma or something on top of everything else!!! Please talk me down guys!! I need some positive vibes....I am shaking in my boots!! Bren

Mine started out slow and built up with more and more symptoms over 4 years....got really severe after a partial hyst and then my body completely crashed in Feb 2011 so I was literally bedridden....but your right that when it hits....it hits with a thudding BANG! Bren

Thanks girls for the impressive replies!!! I have taken all the info and passed it on to my internist....so now just waiting... Julie- I started having numbness in my chin and lower face and then the next day we discovered my back, chest and torso were covered in tiny little bumbs the size of pimples....very strange....I have never had anything like it.....since you are very knowledgeable on mast cell does that sound at all familiar? I have also been having severe nausea, weird skin tightness, the bumps itch and burn when touched or exposed, stomach cramping and loose bowel movements....I have tried benedryl but it hasnt helped much and I already take 150 mg of Zantac daily for GERD...no relief......funny enough its the chin numbness that worries me because literature says its the first symptom of met cancer?? I am just in a kerfufel over this...... Katie- I live in Ontario Canada....not sure where you are located??? Bren

I was getting better....now I am getting much worse again.....the gift that just keeps on giving lol! Bren

Hi Jnew My symptoms mainly started out like stroke-like symptoms.......lightheadedness/head pressure, balance issues, vision issues, numbness, etc.....so I think gait issues can happen with POTS.....it is crazy the multitide of symptoms this disorder causes......the ANS is responsible for regulating so much Bren

Hi Britishangel What you describe is exactly how my adrenaline surges go and I can relate to the exhaustion crash afterwards....my specialist says its like a catecholamine dumping syndrome......your body has all this adrenaline in your system and cannot expel it properly.....so it takes a longer than normal time for it to get out of our system and because of that we crash harder afterwards.....I also can barely hold my head up after a night of surges.....feels like I am drugged....terrible nausea, chest and arm pain,,,,horrible feeling...I have been in SVT the last 2 days pretty much nonstop .........I had been doing really well until the last couple of weeks and bam I am right back to square one and no reasons why hang in there girls!! we will fight through this! hugs Bren

I havent had a problem with it dropping my BP but I usually only take 250mg before bed....it does help take the edge off....I can sympathize with you.......I have been having non stop surges today too......SVT every couple hrs.......I hate these flares they are exhausting!! Bren

thats funny Katie because I was going to recommend the same thing! weird how the coffee thing works.....dani what about taking a couple magnesium supplements....cami tea....or gravol??? .....me I couldnt live without my ativan for adrenaline overload....sorry to hear you are suffering!!! also I know it sounds weird but when I was really suffering bad with my surges I found lying on my stomach helped maybe because of the chest compression? Hang in there!! Hugs Bren

Okay all my mast cell friends I need your help!! Just got back from seeing my internist today because I have been breaking out in an allover body rashn numbness in the face, severe joint and muscle pain, loose bowel movements and nausea.....oh and I was in SVT (120's) with high blood pressure.....he really wanted me to go to ER I declined saying this happens all the time....if you could have seen his face! I said last time in the auto specialists office it was 145 lol! Anyways he was immediately going to try me on another beta blocker until he looked at the rash covering my back and torso.....he said this looks like a histamine reaction...I wonder if you could have mast cell issues??? (he is very smart!) unfortunately I livin in a small town and we are not sure with what testing to proceed with? (he ordered urine testing but no lab here does it only plasma.....are there other tests? also what is the standard treatment proptocol? I am trying to gather as much info as possible so he can go ahead with treatment and discuss with my auto specialist......I could use any help and advice Thanks Bren

I can relate too Ginger!! I have had this for 4 years! when diagnosed in May was told in 6 months things would be better.....they are soooo not better they are worse! and my new internist says he thinks this will be a lifelong illness and cant predict any kind of prognosis yea!!! I also lost my job contract this week as a oncology ward clerk...I knew it would happen eventually but it still makes me very sad....I am slowly losing everything that anchored me as being a normal person Hang in there.....hugs Bren

Thats funny! I also find my body cannot tolerate food until later in the day...... Bren

Thanks Katie! thats a great help Bren

nope..... I have used it every day for years and thats on the advice of my ENT (he has many patients who have used it for over 20 yrs without issues apparently)......they have a 12 hr long lasting that you only need to take once a day....I have never had any problems with it aggravating my symptoms or causing adverse side effects....I have tried everything else and its the only thing that helps my congestion

yep actually they do! They are a little annoying feeling but its worth it to be able to breathe......I have horrid sinus congestion too and my 3 go to meds are nasonex, dristan and breathe right strips.....for infections I use the neti or the hydrasense.....the dristan atleast gives you instant relief and I find it doesnt aggravate my tachy so its worth a go Bren

Have you tried just good old fashioned Dristan? usually you can use that along with the flonase....it can give immediate relief....just dont use too much or you will have rebound swelling....also what about Breathe Right strips? Bren