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Surviving and Thriving with Chronic Illness

My mast cell week - How was yours?

Dr. Diana discusses the forum, her mom's mast cell reaction and xanax
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Thank you for the words of wisdom (and the laughs). Sending your mom lots of good thoughts for her recovery. (And some for you after what was undoubtedly a very stressful experience for you too.)

Dr. Diana,
You look incredible for 54!  I’m sorry to hear about your mother.  I hope she recovers in good time and that much can be learned from this.  Our chronically sick parents do have quite the humour, don’t they?  ‘m still giving your Driscoll Theory another read.  It’s so fascinating but I’m very new to studying about EDS, let alone mast cell.

Dear Dr Driscoll;
We took our dtg Lisa to see Dr L Afrin in South Carolina he is a mast cell doc. He believes that it is MCAD that is causing Lisa’s dx of ehlers,CCI,POTS, and angioedema, and when the mast cells are under control the other issues will improve too.What are your thoughts on this?  Linda Simmons RN

Dr. Diana,
Thank you so much for your selflessness and giviing back by helping so many of us affected with EDS/POTS/Mast Cell Disease, etc….  Your support is so meaningful to so many.  The enormity of your challenge handling your own illness, as well as your affected children, while supporting us with your forum and videos, is simply remarkable!  Your Mom’s rare reaction to medication and your tips regarding zantac and zyrtec for very possible MCAD is greatly appreciated. The story you shared about the timing of your mom telling you she planting acorn squash and cantaloupe seeds was both humorous and extremely touching!  Wishing your mom continued improvement as each day passes!  Here’s to Keeping Life Simple!

Dr. Diana,
Thank you so much for your selflessness and giviing back by helping so many of us affected with EDS/POTS/Mast Cell Disease, etc….  Your support is so meaningful to so many.  The enormity of your challenge handling your own illness, as well as your affected children, while supporting us with your forum and videos, is simply remarkable!  Your Mom’s rare reaction to medication and your tips regarding zantac and zyrtec for very possible MCAD is greatly appreciated. The story you shared about the timing of your mom telling you she planted acorn squash and cantaloupe seeds was both humorous and extremely touching!  Wishing your mom continued improvement as each day passes!  Here’s to Keeping Life Simple!

Hi Linda, I DO believe that mast cell disease contributes to CCSVI and POTS. I believe it is possible that mast cell disease could be congenital and change our collagen in the womb, but I’m not certain how to align that with the types of EDS for which the geneticists have identified specific genes. I also believe that many of us may have an additional vascular issue… Working on it! PLEASE keep us posted, OK? Big hug,

Hi Nab, Thank you for your kind comments. Take your time with all of this reading. It took me years to get to this point! And “thank you” about my ‘looks’. As I like to say, “I have good genes.” HA!

You are so sweet, em, thank you! Mom’s doing great now! Stress—gotta love it. My Mom was in the ICU in one town and my daughter was in the emergency room with a small concussion in another town! Jeez, my arms are long, but not THAT long! And yes, I think we can laugh in most any situation if we try hard enough. wink

Have you ever had poison ivy or poison sumac? My worst dysautonomia and tachycardia ever was when I was exposed to some poison sumac last summer. I have not recovered from it yet now that I think about it. I got a lot worse and haven’t recovered like I use to. It’s been about 15 yrs of periodic bad episodes that would last weeks or even months. But I have been in a constant bad episode now for over a year. I would guess it’s been one thing after another triggering it. But I’ve been flushing so much the last few months that now I have some telangiectasia :(

Hi Deb, I’ve never gotten poison ivy (worth mentioning) before, but the way I look at it, was that was one of your final “triggers” that pushed your body over the mast cell edge. Mine was a virus. For some folks it’s extreme stress. Either way, aggressive mast cell treatment is certainly in order! In my next video I’ll address this, OK? Big hug, smile

You may right. I had not thought about it that that episode pushed me over an edge. That is very likely. I have been having all of these symptoms for 13+ years but I have good months and bad months. So it’s worse now.  I am excited about and desperate to get some gastrocrom. I think that will help a lot. But my next appointment with the doctor that told me about my histamine problem July 12th is not for 7 more weeks. I will try to see if he will give me a prescription for that sooner. But that will not help the POTS. It’s weird that in the last two day my sister,me and my mom all have had terrible POTS symptoms. I think something is in the air that we are reacting to. My heart was 104 when I woke up this morning and has been like that all day. We have no allergy symptoms as far as nose, eyes, asthma, etc. But we live 10 miles apart so the air is the only thing we have in common for these two days.

Deb, Don’t be so certain that mast cell treatment won’t help the POTS! Because treatment controls histamine which causes vessel dilation, you may indeed notice a big improvement there (give it a couple of months, Hon. And brace yourself. It may be very exciting!). Will you let us know? Big hug…

Dr. Diana,
Thank you so much for your selflessness and giviing back by helping so many of us affected with EDS/POTS/Mast Cell Disease, etc….  Your support is so meaningful to so many.  The enormity of your challenge handling your own illness, as well as your affected children, while supporting us with your forum and videos, is simply remarkable!  Your Mom’s rare reaction to medication and your tips regarding H1 and H2 blockers for very possible MCAD is greatly appreciated. The story you shared about the timing of your mom telling you she planted acorn squash and cantaloupe seeds was both humorous and extremely touching!  Wishing your mom continued improvement as each day passes!  Here’s to Keeping Life Simple!

Had to laugh at your remark on the spam.

Thanks, Mommyandme, We must keep laughing, don’t you think? It certainly helps me! wink

Thank you, Eternaloptimist for always lifting me up. It means more than I can tell you. We’ll just have to lean on each other, OK?
Big hug…

Thanks so much for your caring ways and getting back to me on my daughter’s severe floater situation…you were right ...Inflammation in the eye…or perhaps Uveitis..No specialist was able to help until you! We had been to the best eye institutions in the United States…You are wonderful!

I am 39 years old and was diagnosed with POTS in December 2010 via Tilt test at Scripps Clinic and then at Mayo in January 2011.  I have been a POTS sufferer since I was 30 years old however noone ever knew what what was wrong with me.  Of course everyone thought I was always over reacting including my doctor and family.  My doctor told me it was stress and to take Lexapro.  I have had many healthy periods in my early thirties with remission and doing triathlons and being quite symptomless, but usually had flare ups when I traveled or ran myself down (insomnia and say drinking too much at a wedding) then my symptoms would flare for two months and then I wold resume a somewhat normal life.  When my flareups are present I pretty much cannot leave the house.  I just delivered my second boy 3 weeks ago and I am in a major MCAD and POTS storm. I am currently researching a lot about MCAD because I have many sympoms of it dating back nine years.  My body reacts to everything right now, I feel like I have asthma, sometimes I cannot walk to the mailbox and other times I can clean up the house for an hour.  I get rashes, numbing and burning and strange symptoms.  I am hear to figure out what meds will help me most and if any and power through this damn debilitating illness!!!  WE can beat this!  Thanks Dr. Diana!

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