(Archived from miatamom - original forum)
miatamom

Hi all ......
      I just had gall bladder surgery, and right before surgery my doctor came in to tell me that Dr Lugar stated not to treat me any different that any other patient!   I was in shock,  as she diagnosed me with uticaria pigmentosa a 6 months ago! I am sending her a letter about my confusion.
  My test with her came back ...ANA titer=positve and speckled........basophils at 20% which by that test said it was indicitive of uticaria pigmentosa. I have all the symptoms of systemic mastocytosis...and if it is not that....I certainly have not had any other test to conclude differently.
Dr. Lugar ask the doc to tell me and my family, 5 minutes before the surgery...that I do not have mastocytosis!!!  I am so confused!  So Back to the  drawing board!!!  I need a mast cell doc soon!Too many years of discomfort and almost passing out....tongue swelling, abdominal swelling...food allergies and neurological tremors with muscle weakness. I really need some help. If anyone know a doc near me in Raleigh NC...please fill me in!!
  Hope everyone is doing well.....and have a great week!
                              Karyl
01 June 2009 08:29 AM

(Archived from sharon-nc - original forum)
sharon-nc

Karyl,
I am so sorry to hear about your problems with Dr. Lugar. So far the best that I am getting out of her is that she is pushing my other Doc's really hard. And, I'm probably getting a referal to the Doc's at Vanderbilt (been there before, they are brilliant Doc's, not pleasant people).
Dr. Lugar is the closest to a real Masto Doc I've been able to find in NC. Prior to seeing Dr. Lugar I saw Dr. Versotovek at M.D. Anderson, before that the Doc's at Vandy. Geographically we are in a really bad situation.
My PCP is a good PCP for a masto patient - he's been my PCP since I came to NC 8 years ago. When he first got me he knew nothing of masto - couldn't even spell it, but he was interested and learned. He admits to enjoying learning about his odd patient. He openly looks at medical web sites on our visits and checks to latest masto info. He's by far no masto specialist, but he is interested and tries hard. Dr. Bruce Hughes, University Family in Charlotte, near UNCC.
There is also an allergiest in Charlotte who had seen masto in another patient once before I appeared in his office once and never went back. I'll be happy to give you his info, but he's of the mind that rare diseases don't appear in his office -  he is of the opinion that it must be something else and will look for the something else. Contact me if you his info. Now that I've posted kind of negative things about him, I don't feel appropriate in giving his contact info right here!
It still amazes me that Duke or UNC doesn't have somebody that can work with masto - but I've not found them. If you find them, please let me know.

Jill,
I keep telling the Doc's to check for hypoglycemia - it makes sense. And I know that during a couple of hospital stays my blood sugar has been very low. I also carry snacks in my purse when I am out because I am alledged (by my husband, and by others who are brave enough to tell me) that if I don't eat every couple of hours I get grouchy. When I have the big purse, you can bet that the tiny purse is in there, keeping company with a bottle of gatorade and crackers with peanut butter. And if I'm out with my hubby or my Mom you know I have the big purse.
I do have some cardiac issues, but we are still not at the bottom of the whole thing. And yes, I am always dehydrated when I land in the ER - even though I am constantly drinking. I do eat, but I "waste" a lot of food with the diarreah and I sweat like a professional athlete (not a dainty southern belle about that at all). I actually eat quite a lot for a person of my size - I think. I am on a high sodium diet. And I do take salt tablets on occasion. However, when my blood pressure drops its hard to eat. I don't want to eat when my BP is low, but when I'm having "my normal" BP I'll have a hearty appetite.
I need to work on my PCP for a blood sugar test - he's my best Doc for that. Dr. Lugar would send me out to some specialist or suggest that we wait until cardiology is done with their work.

Thanks!
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Sharon in NC
01 June 2009 11:46 AM

(Archived from triciag - original forum)
triciag
Uh, I'm not sure about that doctor.  I was told urticaria pigmentosa is mastocytosis.  And I'm sure all those moms on mastokids.org would say so also.  Doesnt mean it's systemic mastocytosis, it might just be cutaneous mastocytosis.  I understand your frustration though. Im sorry.  Some doctors say they know about this disease, when they really dont know sh#@.  Sorry again.  I'm just tired of not having doctors understand me.  I also believe in alternative medicine, and if i ever brought that up to my allergist...that would probably be a big no no.  I think "most" docs in med school are trained to think alternative medicine is the devil or something.
02 June 2009 10:38 AM

(Archived from deborahw - original forum)
deborahw
Dr. Lugar apparently doesn't know what she is talking about. UP is definitely mastocytosis. You need to find another doctor. There must be a reason that TMS does not use her on their advisory board....
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Feel well!
Deborah
02 June 2009 08:02 PM

(Archived from miatamom- original forum)
miatamom
I think you may be right!   Also my ex works for a pharmacuetical compay , and I feel sure they are ruling the doctors now!   It has been a long 14 years for me , trying to find good doctors and I am getting so much worse and I feel pretty much exhausted on ever finding anyone who can help me. Whatever this is,  it has attcked my liver , pancreas, gallbladder,brain and now skin! It may be too late by the time I  find a doc! Plus just the allergies and anaphalaxix in general.
   I hope you are doing better, and I truly understand your pain where the doc issues are at hand!If you ever wanna chat..imamiatamom@ yahoo is my address!
  Take great care and good luck in your search for a great doc!
                                                                              Karyl Murray
03 June 2009 12:23 AM

(Archived from jillg - original forum)
jillg
Couple of points to add:

Sharon-  you might want to ask that cardiac doc about your electrolytes.  With all the salt you're taking, you shouldn't be having such low blood pressure.  Also, ask them to write you a script for a One Touch blood glucose monitor or something like that so you can check it WHEN you feel like passing out to see if you have some low blood sugar going on there.  Does drinking juice help?  I had something similar going on when I get all weirded.  I get dizzy, shakey, sweaty, weak, etc. when I get a masto attack.  They tested me for hypoglycemia and even a seizure disorder.  I found that I do better when I get regular doses of PROTEIN in my diet (ie MEAT).  It stops my blood sugar from having the fluctuations, as it is broken down more slowly.  Also, fiber helps with this too.  Sounds like you're in the "maladsorption station".  I know where you come from, I'm a royal grumper if I don't eat too.

Karyl- Welcome and HUGE HUGS.  It sounds like you are having a rough time.  You just have to keep fighting there.  Oh man, do I remember doing that.  Find your inner tiger... you're going to need it!  That's one of the hardest realities of this whole rotten deal... fighting for what you need.  I don't like to do it, but boy, when I have to, that tiger can come out alright!  Hang tough, you will get straightened out eventually; don't give up until you get the answers you need.  You owe it to yourself, you are just as deserving of a healthy happy life as anybody else, and don't let these obstacles get you down and get in your way from living the life you were meant to live (oh my gosh, I am starting to sound just like Tyra Banks!).
03 June 2009 09:21 PM

(Archived from sharon-nc - original forum)
sharon-nc
Jill,
I don't know how I missed your post, but I just saw it this morning. Low blood sugar has been a theory of mine for a long time, none of my Docs - except Drs. Roberts & Oats at Vandy, when they had me in 1994, consider it a possibility. I'm carrying Gatorade and peanut butter crackers in my purse. Fruit juice tends to upset my stomach. But Gatorade works.
I eat 4 times a day, plus snacks, & still am alledged to be a grouch if I get hungry. I should take the husband to the doc with me next time. He can tell about the day we were out running errands and I'd opted for a wristlet (no room for Gatorade & crackers) - he pulled the car into a Starbucks and said, "Go get a scone, and don't come out until you've eaten half of it." He was serious too. Usually he won't stop for a scone, because he's always dieting. After I got back in the car (I'd eaten half my scone, gotten a Gaterade to go with it) he was his pleasant happy go lucky self. We enjoyed the rest of the day. But, oh was he snippy before I ate that scone.
My Mom gets snippy when I get hungry too. So does...Yeah, I'm seeing a pattern.
Drs. Roberts & Oats saw it when I was seeing them. But they also said, "I'd grow out of it." Its 15 years later and I haven't grown. I really haven't grown.
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Sharon in NC
13 June 2009 12:51 PM