Questions In Preparation For Allergist Appointment

[tinkerbella]

Julie,

With my dysautonomia, I'm unable to retain fluids and two full days I have to go for sodium chol. infusions. they take the whole day between getting there, trying to access my venous system, ( I'm getting a portacath soon, my case is complicated) and dealing with the complications that arise while I'm there. Then the issue of getting back home again.

BNP is to check to make sure I'm not going into congestive heart failure. I have these done all the time as my level on stress test came back suggestive of congestive heart failure. so we must monitor the fluids when I feel any new feelings and yesterday it hurts to breathe. Today I'm thinking the pain is lower and in the left quad of the abdomen. lower bowel and I'm try some home remedies first before going in the hospital. I think you can understand that one...

this link is all about a BNP Test. I have them all the time, I thought everyone did when they got blood work done from the cardio.

Like I said in a posting before, my case is not a simple one. My doctor and team are a blessing to me. MY doctor has never seen a vascular system like mine before and thought when he sent me into a certain doc who I will not mention , that he would write a medical journal on me. But this person had his fellow spend all the time with me and then he walked in the room and through up his hands and didn't know what to do with me. Thank God I found another wonder Neuro in our city who is working with my cardio.

I just can't keep enough fluids in me...Tanked up yesterday and I'm so dry this morning.

thanks for your ongoing support.

It's off to return the monitor and come home and rest and it looks like another scorcher out there today.

I better call the gastro, allergy, PC, and the taxi. I'm tired just thing about it. LOL!

It will take me a while to line up an appointment as I'm trying to line up rides, but I'm working on it....

You'll be the first to know.... thanks again...

http://www.webmd.com/heart-disease/brain-n...eptide-bnp-test

Blessings and Love,

hugs too!

BellaMia~

[juliegee]

Bella-

So awful. I'm sending lots of healing prayers your way. Keep us posted on how you're doing & what you find out.

Julie

[ajw4790]

Hiya all!

Yes, I have been AWOL awhile as I moved to parents house and then with them to Illinois. It has been a long drawn out stressful battle. I hope to start being able to spend more time on here again. Especially because I know that as all the adrenaline to get myself through the moves wears off I will likely CRASH pretty hard! AND I am supposed to start messing with my meds, and that is apt to have some kind of effect on me...

As far as the whole allergist thing.... Urrggghhh! I did go and she said my blood tests show I do not have mastocytosis and am not allergic to anything that was tested. She also said that IgE is so low that I really can't be allergic to much of anything, and that the symptoms that I describe are completely not supported by the blood test results. So, story of my life... nothing showed up in a way that was at all familiar to her, and because I showed no severe allergies etc. she has no interest in me. I don't think she planned to see me again, even before I mentioned I was moving. So, other than some things showing up negative the allergist was not much help.

She did explain that the contact "allergies" are a different animal altogether and do not show up in the IgE test. So, I can get tested for contact allergies, but have to see a dermatologist to do so... And I was just there... and had no luck with anything... but, this was not superspecifically addressed. So, once settled it is another thing on the to-do list.

So, I think that was all that I got out of that appointment... Oh, I guess that what is supposed to be the most specific test for celiac did come back negative. So, again that appears not to be the problem.

I guess I am still not real sure if my test results (i.e. low IgE) means that MCAD is not likely??? Anyone know?

Thanks!!!

[juliegee]

Sorry you didn't get the definitive answer you were looking for... In a nutshell, your low IgE does NOT mean you don't have MCAD. Look back at page one of this thread. To get a more definitive and comprehensive answer, you may have to see a masto reasearcher.

The World Health Organization recently worked to put together a more definitive definition and categorization of Mastocytosis. They are slated to work on doing the same for MCAD in 2010. My hope is that once they have hammered out their criteria.....more and more allergists will have a better understanding of this disease process and getting a DX won't be so difficult.

In the meantime, you still deserve respectful and humane treatment. Does your allergist's lack of knowledge about this mean that you should be denied treatment? NO! I had extreme symptoms of allergy- chronic hives, upper respiratory symptoms, upper airway constriction, chest tightening, and even anaphylaxis....BUT all of my allergy testing came back negative (inhalation & anaphylaxis series AND RAST testing. My IgE was also low.) Should my allergist have let me die because my test results didn't fit his diagnostic criteria? Dumb question, but that is what your dismissive doc seems to be indicating. I was given appropriate treatment (meds) and an epi-pen which I've had to use several times.

I'm not sure how severe your symptoms are or if you're dependent on H-1's and H-2's. If your symptoms are extreme and you are dependent, that trip to a masto researcher is a really good idea. My treatment didn't change once I saw Dr. Castells at Brigham and Women's, I simplyhad a name for my illness and an explanation for why I needed so many daily prophylactic antihistamines.

Hang in there-

Julie

[ajw4790]

Mack's Mom,

Thanks for your help! I had reskimmed previous posts again, but my ADHD self did not grasp everything... I came to learn when some of the fog lifted. But, overall I don't think I am as confused now as I was before, much of the confusion I think was due to the drs. persistance that I have nothing allergy related going on. When clearly I break out in hives/rashes etc. when exposed to certain triggers. But, it must be more of a contact dermatitis-type of thing, so it sounds like she isn't as well versed in that. I will have to see about finding another dr. at some point, and depending on how things go, see about seeing a specialist like Dr. Castells.

I couldn't remember if your IgE was low as well. It is helpful to know that it does not have to be high for it to be MCAD, because if it were high it would mean that there was true allergic reactions going on.

I can get SOB and tachy with my "non-allergic" reactions, but never to the point of an ER visit. I did once have such SOB post medical procedure (heart echo with bubble study) that I went to see a nurse and dr. at a drop in type clinic on my college campus. I was walking around after it and was gasping for air. It was blamed on extreme heat and humidity that day. That time I did wonder if I was on the verge on anaphalyaxis, but gradually got better especially when I was inside.

I am not dependent on any H-1 or H-2 blockers, but also have not tried any in quite a while, and did not discuss this with any drs., because I figured they would not understand... May need to try in future. There are still just so many lose ends in my life right now, and I still don't even have a local PCP. I gotta get to finding one that will take me.

Thanks!

[tinkerbella]

Update on my allergy appointment:

I was at 850 Boylston St, in Brookline, MA all day today for another reason and decided to walk down to the allergy clinic. they remembered me but couldn't find my records as it was 2000 when I was there last and so I have to start as a new pt. and they will bring up all my old records. After giving me the appointment I think she was going to take it back because it had been so long... I kind of explained how I tried to get in in 07 but she had such a long wait that I needed an emergengy appoint that my PC made me go elsewhere. Thank goodness that I did as I got dxed with pots.

So, long story short Dec 18th is my appointment.... I'm all flared up here tonight as I've had a cortisol stim test friday and today uterine biospy and I'm having the worst flushing, flashes, and chocking feelings. Oh my, they used lidocaine on me and I'm allergic to it but it was without eppie so she said it should be ok.... this was 7 hours ago... weird how I how like delayed reactions. I may need to go take some bennydrly and go take my bp and heart rate and if things look off call the er and check in.

when does it ever end my friends?

Bellamia~

[iheartcats]

Update on my allergy appointment:

I was at 850 Boylston St, in Brookline, MA all day today for another reason and decided to walk down to the allergy clinic. they remembered me but couldn't find my records as it was 2000 when I was there last and so I have to start as a new pt. and they will bring up all my old records. After giving me the appointment I think she was going to take it back because it had been so long... I kind of explained how I tried to get in in 07 but she had such a long wait that I needed an emergengy appoint that my PC made me go elsewhere. Thank goodness that I did as I got dxed with pots.

So, long story short Dec 18th is my appointment.... I'm all flared up here tonight as I've had a cortisol stim test friday and today uterine biospy and I'm having the worst flushing, flashes, and chocking feelings. Oh my, they used lidocaine on me and I'm allergic to it but it was without eppie so she said it should be ok.... this was 7 hours ago... weird how I how like delayed reactions. I may need to go take some bennydrly and go take my bp and heart rate and if things look off call the er and check in.

when does it ever end my friends?

Bellamia~

Bellamia -

I know what you mean - it just goes on and on sometimes. At least you have an appointment. Let us know what they say!

I have a local allergy appointment in 2 weeks where I'd like to have an IGE test to help figure out my random hives. We'll see.

I still can't figure things out, but it looks like some of us are getting there, so you can, too!

[juliegee]

Hi Bella-

So glad you got an appt! Sorry things are acting up. I had a uterine biopsy in my gyn's office & had an awful reaction after. I couldn't stop shaking for hours. Stressful or painful things can set me off too. I hope things are settling down.

Gentle Hugs-

Julie