anaphylaxing

I have unexplained tingling in my hands and feet. I've been on steroids since they started so I don't know if they would've gotten worse or not. They've been about the same for 8 months on steroids; though they fluctuate day to day

I feel like you took the thoughts out of my head. Going from busy, active, productive to SICK. I can't let go of who I used to be. I LOVED who I used to be and was so happy and this is ****. It is SO hard. Each day is SO hard. I think the rarity and misunderstanding of the conditions makes it worse because we don't know exactly what we are facing or accepting.

I try to do little things like, shower, brush my hair (didn't for months), smile (that's a really hard one), as daily efforts to avoid constant depression

Thanks for sharing.

I also have joint hypermobility and POTS. It means our blood vessels are looser and don't circulate blood as well and it can tend to pool in our abdomen and legs. I just thought my double jointed elbows were cool my whole life now I'm starting to despise them for that they signify. There is a yahoo group of us with CTD like EDS, POTS and some with mast cell disease if you're interested to look through the posts or join

http://uk.groups.yahoo.com/group/theelephantproject/

I always had blotchy purple legs growing up but now have full fledged POTS but I also have ? MCAD

I get fevers as part of my mast cell reactions to various triggers. Whenever I'm most symptomatic I also have a fever

That being said you need to rule out infection as a cause if you still have it. .. CBC, Chest xray, urinalysis

Would an elimination diet be worthwhile? I have mast cell symptoms with my POTS and have tons of food triggers that I'm trying to sort out. Lots cause nausea. The top ones that trigger mast cells for people are chocolate, cheese, tomatoes and alcohol.

Good luck and keep up posted.

Interesting! I have a diagnosis of mast cell activation. Had acute onset anaphylaxis, POTS, and sensitivities to food, chemicals etc

My sister for 20 years has called herself multiple chemical sensitivites and was totally dismissed by the medical community but now we are realizing her problems are also likely mast cell.

Stress has a big roll in triggering mast cells so any variables we can modify are worthwhile trying to! Thanks for the info everyone

Anyone have tricks for dealing with this?

I've only had it for a month and it's totally upheaved my whole life. Everyone around me is so irritated too.

I just ordered a foot peddler exerciser on amazon. I'll let you know if it helps at all.

Yes I've heard that recumbent biking or and NON-STANDING exercise is a good way to start to get into exercise. I also try walking but can get pretty breathless at times. Also resistance/leg weights if approved by your doctor. Swimming also helps some.

I don't have a bike but I'm going to check online for some sort of foot peddle or something that would be cheaper than a whole bike.

I feel that way everyday can't get up before noon

A thought on the cold sores. Could be from the prednisone they gave you with the IVIg....if they did give you prednisone? I get nasty outbreaks whenever on steroids and need to take daily valacyclovir.

Mines always weakly positive

Yes they are all very far from me and am wondering if anyone's aware of other ones. Thanks!

Anyone found one? Anyone?

Wow it sounds like your doctor has a GREAT handle on this whole thing. I have ?MCAD and POTS and am really trying to get someone to acknowledge that they might be related. What exactly it is isn't a huge issue if you can find ways to treat it and feel better (which I haven't so keep me posted if you do!)

I think H1s and H2s sound like a really smart and safe idea.

What immunotherapy was he referring to?

Jen I am so sorry to hear this.

I also left Mayo feeling like a frustrated pincushion.

Did they say how long you need to wait to see if IvIg is of benefit? I know it's variable, but that's something I would want to know. IE how long do you have to stay on infusions if they make you feel like garbage and don't help?

I would think it might take some time before seeing big effects.

I think you were right to stand up for yourself on the Mestinon. You know your body and heed to take things slow. What you went through on it sounded horrendous.

I remember lying in bed crying not understanding what was happening, my heart was racing uncontrollably, and they came in and told me I was anxious but since my ECG was normal everything was fine. I felt SO hurt and alone and scared.

Then more invasive tests were brought up and I could relate to what you said. I just felt DONE. You go through so much and it takes so much out of you that the thought of another test with a bunch of risk is just so overwhelming.

Take things at your pace. Ask you doctors for a plan of when you might go home or what criteria you need to fulfill before they let you and you can work toward that. If you don't want to ask get someone else to to avoid the stress. I find sticking up for yourself in the hospital setting SO exhausting.

Are there any other medication options? What is the plan if IVIg doesn't work? I'd want to know that.

Those are just my random thoughts, but this is hardest on YOU and you know best

Hang in there! We are here for you!

Ana

It is my understanding that all peripheral nerves, under the right circumstances can regenerate, but central nerves (spinal cord and brain) cannot, so it depends on where the abnormalities lie.

How are you doing Jen?? Well, I hope!! Let us know

Acid is very corrosive, but it only burns it's container

SO well put Julie!!!!

I need to take this advice also, THANKS!

p.s. I forgot to mention my symptoms also flare with my cycle

worse reactions, tachycardia, nausea etc

Maiysa

I can relate to so much of what you said. I had anaphylaxis 7 months ago and my immune system has been hyper since. I flush after/with every meal, heat, and anxiety. My tryptase is within normal limits. I was sent to M@yo, MN but did not have great success there as I was not mastocytosis.

My life, too, changed overnight. I've also developed POTS and medication allergies. More details on my blog.

Anyway, it's key to get you seeing someone about it as you definitely sound like you could have MCAD. They, first need to rule out pheochromocytoma and carcinoid syndrome.

Then trying H-1 and H-2 blockers and maybe mast cell stabilizers to see if you improve would be reasonable

Keep us posted! Good Luck!

Ana

Thanks! I'll try it!

Ana

Yes I'm a total irritable freak now. Can't handle two things at once or any stimulation. I hate it. I also have panic attacks really easily.

miss my old self..

doesn't help people understand my illness when I seem like such a jerk!

Ana

I also meant to ask--has any of your testing been invasive? Or just blood, urine, TTT?

Thanks!

I've been there, still there too. Everything I eat makes me flush; and right now just eating oats, organic milk/freshly cooked meats, sweet potatoe and rice. I'm on a boatload of meds and steroids and still can't find anything that doesn't make me flush. I have off and on trouble breathing, mild tongue swelling, and itching throughout the day. And my POTS is pretty limiting. I'll keep you posted if I find something that works. Glad to hear you've had some improvement! Hope it continues!