I knew I was trying to shock because I was reacting slightly each day, and bleeding under the skin on my arms. It was the 4th day after ending my predisone. I started itching like crazy, so I took 50 mg of benadryl. It didnt stop. I was nauseaous and threw up a few times, tasted like supper beef--was bad, acid so I think it may have had too many histamines in it.  I took 40 mg of prednisone, It slowed down but didnt stop. Next time I dont fool around , I will take 60mg to 80 mg. My life is t worth the worry

My daughters boyfriend took me to meet the ambulance in the usual place. They were funny, neither one had been with me before so I was giving the one caring for me a quick lesson on what to do. I told him what I took and said, "I will need an IV quickly and solumedrol." He did it. Then I told him my BO would sky rocket then drop like a stone , dont let it throw you. He was amazed when my BP went from 140/90 to 231/133 to 90/70 all in 2 minutes.. He said, "You sure know your disease!".

The hospital took good care of me but the DR was one of those "I know better than you." type.  He refused to do a Tryptase and gave me Pepcid when I asked for Zantac LOL.. I did get better though.

The bad part of my day is, not one family member showed up or even called the hospital. They have a lot of excuses but I still hurt over it. Empty lobby when I was released, Empty parking lot..I called all of them and got many excuses of why someone else will come pick me up. I saw an inconvenience. Next time I will take my own car, no matter what. I sat for 3 hours until someone came to pick me up... Really hurt my feelings. Now they are angry that I dare to get upset with them over it, "after all they have done for me."

The good thing is, I had some resaly important testing done when I was in the hospital 2 weeks ago but I didnt have the results,. I have most of them now (got them this morning while waiting).

The 24 hour urine is still pending but I have some results that answer A LOT of questions.  Lisa and Heather can you help me here> My brain is mush and you are both so brilliant. Can you shed some light on what this means for me??

Here are ONLY the abnormal lab values;

WBC-----------17.8--HIGH---normal is 3.0 to 10.1
HGB-----------15.6--HIGH---normal is 12.0 to 15.4
NA ------------133---LOW----normal is 143 to 145

PROTEIN TOTAL-CHANGES IN NUTRITION
ALB------------3.2--LOW----normal is 3.4 to 5.0
GLOB---------4.0---HIGH----normal is 2.3 to 3.5
A2 GLOB------1.2--HIGH----normal is o.4 to 0.9

"Hypoalbuminemia pattern, Consider protein deficiency or protein losing disease state."

BETA GLOB---1.5--HIGH----normal is 0.5 to 1.2
A/G RATIO----0.0----LOW---normal is 3.3 to 3.6
AST/SGOT----10-----LOW---normal is 15 to 37
ALT/SGOT----27-----LOW----normal is 37 to 55
TSH --------- .29-----LOW----normal is .38 to 6.15
PLT-----------379----HIGH----normal is 140 to 350
NEUT #------13.2----HIGH----normal is 1.0 to 6.6
MONO#------1.4-----HIGH----normal is 0.0 to 0.9

DIFF----
SEGs--------84-------HIGH----normal is 50 to 70
LYMPH------10-------LOW-----normal is 20.0 to 40.0

BAS0# -----0.0------LOW-----normal is 0.0 to 20

IGG subclasses;
IGG3<--- 17 ----LOW----normal is 41 to 129
"IgG3: Along with IgG1, the IgG3 subclass is most frequently present in the antibody response to protein antigens. IgG3 deficiency has been associated with a history of recurrent infectious, leading to chronic lung disease. Decreased IgG3 levels are frequently associated with IgG1 deficiency (63)."

But, MOST dramatic, is this lab result;
My IGE is 1330.0 normal is anything under 100.
My IGM is low 40.0

I got the results of my ECG which say I had an anterior infarct in May of last year. I guess it was during an episode. Abnormal ECG but normal sinus rhythm. chest xray shows no problems with heart or bone formation around it. My LDH and HDL are both very good.

ok, what do you think??
Love ya,
Ramona

So sorry your family was not supportive.
It is hard for people to understand illness that goes on and on. So sad that the lack of understanding left you sitting at the ER for all those hours.

I don't know all the labs, but usually a low TSH is good news. It means you are making enough thyroid hormone and don't need your thyroid further stimulated. That is presuming you do not have something like Graves disease, where you make too much thyroid. I don't know what the rest of the labs mean in light of mast cell issues, but it looks like your immune system is having trouble functioning up to par. Is this common with mast cell disease? Low IgG subclass 3 and low IgM can sometimes be associated with primary immune deficiency. Have you been checked yet for all of those kind of things?

Gaynell,
Yes I did. They want me on 60 mg of prednisone for 5 days (i say 4 days, the solunedrol and emergency pred made 5 days, I dont want to have to taper, I want off of it quickly). I spend too much time on it and it irritates me--I gain weight instead of losing it and my blood sugar spikes up, so more insulin (im a diabetic).  

So, the question of do you need a 4 or 5 day course after a reaction, really needs to be answered by you--and you need to ask yourself, was this a pretty general and small reaction or full blown shock? If it was full blown  and severe, I personally think you need a break--mast cell wise and would take that 4 or 5 day offer. If it was a less severe episode, I would opt to just keep my emergency prednisone near me ... now you have to know your own body and choose wisely for YOU.

hugs
Ramona

Hi Susan,
Well, the first DR to catch this, told me that my immune system was going crazy and the prednisone was forcing it to act normal.. but the side effects are so terrible for long term use, I try to get off of it quickly.

Ive been checked for many things, like ANA for lupus, fribromya;gia--which they did diagnosis me with but I think my pain is from the masto in my bones. They checked me for Mast Cell Leukemia, negative. And alot of other things that I dont quite understand just yet. Heather and Lisa are the true experts in biology and tests--so is Jilli

Im a nurse but this was never one of my experienes with a patient so it is not my area of expertise until I came down with it. You learn fast when it happens, you have to!

Yes, my family can be very loving and then very much in denial and a bit cruel. Tonight my Mom told me, to stop being a Baby, that Im 55 yrs old and do not need someone to hold my hand when I go into shock, that the world is not about me....next time, I will drive myself and not bother them... we will see how that turns out, but I dont need extra stress and trouble from them.
Hugs
Ramona

Ackkk! I wrote a long reply to Heather last night and I guess it got lost befpre I posted it... oh well, I will redo it as soon as I wake up LOL...

Thanks Joan, I bet you would and I would love it. so I will imagine it if I have to go again lol..
love u
me

Hi Ramona ,

Ah yes family . I have had to distance myself from mine for my own health . I have more examples than I can say . A couple .

When I ahd my first shock , my mother when told by my sister said , oh how exciting .

When I finally used a wheelchair after a yr of agony when walking , my dad said I was giving up .

I won't go on . I will not upset myself anymore . I have used many excuses for them . I hope they understand one day without getting unwell themselves .

I completely agree with your comment about not fully understanding until you are in it yourself . Its what drives my teach nurses plan i spoke of before . For others . i want nurses and doctors to experience chronic pain for a period of time 24 hours . This could be achieved with a tens machine , and wouldn't do any damage . I know from being anurse I empathised . I was caring , but I didn't really understand . Interestingly I think my fibro diagnosis is bone pain . All my other symptoms have found other causes . I adapted my guide yesterday to this fact .

many hugs

Jose

Ramona, I'm so sorry, for both, shock and family! Maybe next time you can mention to the staff you don't have a ride and they could get you one. Either with a police officer already there dropping off a patient or possibly the ambulance on it's way back from dropping someone off? Of course on the "low down" I'm guessing a cab ride would be horribly expensive? I live in the boonies so it would be for me!

Josie,.Im so glad you are in a better living arrangement and using things to help make you more comfortable--I know how that is, dont let your ego get to you. Do what you need to do for YOU I cant wait to read your lesson to Nurses. All I can add to that is amen. lmao.
Hugs
Ramona