anaphylaxing

I think you made the right decision! Glad to hear it went well! From my limited understanding, autonomic neuropathy is one of the potential causes of POTS (one of MANY potential causes). There are different types of autonomic neuropathy one of which is autoimmune. There are many types of autoimmune but there are a few antibodies that they've sorted out and are able to test for. IVIg is used as treatment for a number of autoimmune disease including autonomic neuropathy. It's a newish treatment but has some promising data in the various conditions it's been used for. Are you still on the cardiac unit? I was transferred around but really found them to be extra nice on the cardiac unit. They cared about my POTS symptoms; whereas, when I was on a general medicine ward, they dismissed them. Keep us updated!

I have never had IVIg but if you tested positive for autoantibodies it is definitely a reasonable treatment and has had much success. I haven't been tested for them. It is possible to have an allergic reaction to it, like any injection, but they will watch you closely for that. I always wonder if mine is autoimmune and if IVIg would help but I have so many allergies I would be very afraid. Do you know which autoantibody you tested positive for? Mayo is pretty much one of THE POTS places. You are in good hands! But it's understandable to be scared. Good Luck! It is GREAT that there is a treatment option! Keep us posted! Thinking of you! Are you going to stay in Rochester for 11 weeks? If so, let me know, I found some great places to stay.

dizzyblonde, if those numbers are real/persist, you definitely should go get checked! You might need home oxygen.

dizzyblonde, that is EXACTLY what I mean. I am tapering off of steroids and really worried that this will get worse. What meds are you on?

I went there with POTS as one of my main issues but wasn't fainting and never got to see the autonomic specialists because I was on steroids (which I think is helping treat my POTS). Traveled from another country so was very disappointed. Glad you are seeing the correct people. I was amazed by the efficiency. Didn't like the 6/7 AM bloodwork, constant IV even if not on IV meds and the repeating of tests that had already been done, but like I said, I don't think I ended up seeing the right people. They said probably POTS, you just need to exercise more. I liked the snacks in the kitchen---the "as much as you can fit on a tray" meals and the guest meals for my husband. I'm glad Neuro is in charge of you. Good Luck and keep us posted!

I get the floaters since POTS too; seems worse when my BP is worse. Before POTS had huge pupils. no floaters.

This is something I am also very curious about. I know it's a risky treatment and with my allergy history I'm kind of afraid of it, but wonder if it would help.

it's a steroid and just a word of caution, steroids have a lot of adverse effects. I would only use them for life threatening situations. I was put on them for anaphylaxis 6 months ago and have been on steroids since because they caused adrenal insufficiency. Now I am on an extremely slow taper trying to see if my adrenals will start to work again. No fun. Some people use them no problem, but if I ever get off, will not take them unless it's life/death.

I'm in a very similar situation. I was on Aerius at first and it didn't work so switched to Reactine/Zyrtec (I also live in Canada). Not sure it's helping that much. But, from what I hear lots of masto people take awhile to sort out which antihistamines work best for them and sometimes mix. I'm also on ketotifen and cromolyn which I think have helped. I'm still on steroids though from anaphylaxis and trying to get off. had to increase my Singulair to twice daily to control chest tightness and needed a steroid inhaler for awhile which I recently tapered off. Have you checked out the mast cell disease forum? http://mastcelldisorders.wallack.us/yabb/YaBB.pl Good luck and keep us posted. More details about my meds etc on my blog if you need.

Yep it's normal to be able to feel them in your neck and groin if they're pea sized and unchanged for ages. If you feel new areas, or lumps enlarging, tender , red or hard (even if painless) then I'd get checked.

I know what you're saying and can relate.. Part of you feels like as bad as things are, maybe they're not as bad as they COULD be if you see someone new. But look, just take it one day at a time. Don't get too ahead of yourself. See the specialist and try to go in with no expectations. Tell them your symptoms, see what they say, think on it and go from there. They cannot force you to do anything. They might be great; they might not. They might understand. They might be useless. Time will tell. More information can't hurt. I say it to you and to myself because I find doctor's appointments to be one of the most stressful experiences of all these days. I think I get my hopes up so much and am so affected by what they say. I'm trying to set my emotions aside. Good luck and keep us posted!

i have constant numbness and tingling in my hands and feet

Do anyone else's veins turn black in your hands and feet when you shower? My extremities also go pretty white with some red blotches. Trying to figure out if i'ts POTS, masto, adrenal insuff or what. Figure it's low BP related Before I had all of this my legs used to go purple splotchy in the shower but never like this.

Scary! Did they figure out why you vomited blood? Are you getting some investigations? Glad to hear that you're feeling better.

meant to add less contrast is also a HUGE benefit as it was 150 cc of contrast that started me with MCAD/POTS/AI you name it!

The lower radiation dose is a HUGE benefit. One thing though, higher resolution does not always equal a better image as you get and increased amout of noise/pixellation/artifact the higher the resolution which is actually detrimental when looking at some structures in anatomy. Eg they've found the old school "1 slice" scanner might actually be more accurate for brain imaging than all of the fancier modalities. HRCT is VERY Good for processes such as interstitialy lung disease like sarcoidosis, asbestosis etc

I'm not sure if they helped me or not but I have ?MCAD and it WAY aggravated my itching etc so I don't wear them anymore.

I'm SO SORRY to hear that things are so bad for you . If you're that bad, do you maybe need some IV fluids to catch up? that is a REALLY high heart rate....

Urine VMAs, 24 hour urine N-methylhistamine and prostaglandin D2 serum tryptase and total IgE ESR, CRP, ALP, LDH

Have your doctors excluded Pheochromocytoma and carcinoid? After that, and if H-1, H-2s and mast cell stabilizing meds help then that's all they can do. MCAD is an evolving entity as far as its diagnostic criteria and is poorly understood. Hang in there!

Yep I get all of that tingling. My MRs been normal everything normal but supposed to see a neurologist if I can get off steroids (on for anaphylaxis and ? MCAD) I don't know if the tingling is pots or mcad or both

p.s. personally I will NEVER take steroids again IF I can get off, unless it's life/death. They are so harsh with so many side effects and I might be steroid dependent for life because they were used inappropriately in my case I would take every other med possible before going on steroids singulair helped my breathing a lot. I take it twice a day.

Reading your post is like reading my story. I've been battling for sick months after an anaphylactic reaction to CT contrast. Read my blog http://mastcelladrenalinsufficiencypots.blogspot.com/ Contact me if you want. Yes you should get the N-methylhistamine done. But no test changes your symptoms and while it's an area of great debate, if pheo and carcinoid have been excluded, you need to avoid triggers and find a med combo that helps. I am also on singulair. Are you on any mast cell stabilizers eg cromolyn? I wouldnt recommend M@yo, I would go to Boston-Brigham & Women's if you can go somewhere. I also have POTS but no one's too concerned about it or doing anything. I'm trying to get off steroids. But I don't have control yet---had tongue and throat swelling to SMELL of garlic last night! It's insane I Too want my life back.

I have had it when things are bad. Sticking to tiny frequent meals. Drinking lots of fluids and laying down after I ate helped me. Also avoiding too muchr starchy/carby food hang in there!

Before I was symptomatic with POTS/my whole life my legs would turn purply red in the shower, heat, or if I stood too long. Then I got sick, now I have POTS and my legs/feet hands go really pale in the shower and I notice my legs and feet going purple when I sit