Mast Cell Disorders Forum - No more denial

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No more denial (Read 10699 times)

Lisa

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I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil

Re: No more denial
Reply #15 - 07/16/12 at 12:32:40

Cindi, as to surgery, you have no need to fear dying during it. I've gone through probably the most dangerous form of surgery a masto patient can face, Open Heart Surgery, and came out beautifully and quite alive! When the doctors know what is wrong and use the appropriate medications and take the appropriate precautions we can indeed go through even the highest risk surgeries. Yet you are wise to be cautious for surgery and masto are exceedingly dangerous if the doctors are not on board. So, I think you're wise to go slowly with this and you should for it's your life that is at risk here and not those doctors. Find more information about your illness so that they can plan properly for surgery and then once they do, you can get through it as well as I did with mine. Trust me, my surgery was really the king of all surgeries for masto patients and when the doctors know what they are dealing with and plan accordingly, even this surgery can be done. Yet, having said this, if the doctors don't take it seriously even minor surgery can present serious threats. So, again, go slow until they KNOW what they are dealing with and then when you feel that they are 100% on board, then you can RELAX and allow them to do their job.

Hugs!

Lisa

Don´t forget, there is so much more to life than being sick!

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Sweet Tea

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Never ever ever give up

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Charlotte, NC

Re: No more denial
Reply #16 - 07/16/12 at 14:54:44

I appreciate the warm thoughts! Yes, this has been a trying week for sure. Today I started the 3 day prep for the 24 hour urine test and also went to the ortho surgeon and after this test comes back then I'll have the surgery. Coming downstairs this morning thinking of the appt and the prep I broke out in hives and flushed. I should have rushed off to get my blood drawn but I missed the 2 hour window. I guess I'll have to wait until tomorrow when it happens again.

So then I thought I'd be clean and neat and shave my legs prior to the ortho visit, ended up getting the bad rash, linear hives, and circular ones for realizing what I just did. I took pics but I don't know how to add them on yet.

Take care,
Cindi

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Lisa

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Posts: 1499
Volta Redonda, RJ Brazil

Re: No more denial
Reply #17 - 07/16/12 at 15:38:29

Cindi, have you considered contacting Dr. Frank Lichtenberger? He's recently left the NIH and is in your area. He knows SM and I'm pretty certain that he's well versed on MCAS. He can at least rule out SM which is the most threatening of the MC disorders. I would think you'd be a great deal better off with Dr. Lichtenberger than with your present allergist!!! Dr. Lichtenberger has been trained by Dr. Metcalfe, one of the highest authorities in Systemic Masto.

Here is his contact information, Cindi.

Dr. Frank Lichtenberger
Allergy Partners of Statesville, NC
1703 Davie Ave
Statesville, NC 28677
Office: 1-704-873-5055

Don´t forget, there is so much more to life than being sick!

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Sweet Tea

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Never ever ever give up

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Charlotte, NC

Re: No more denial
Reply #18 - 07/31/12 at 05:55:38

I will see Lichtenberger once I get my test results completed with my current allergist.

Right now I'm so upset. I just left from my appointment with my allergist to get the results. He couldn't find my 24 hour collection results (for VMA, metanephrines, HVA, 5HIAA) but had my pre- and post- tryptase results. As the discussion progressed he doesn't think he can rule out SM just yet. But what he told me is I have auto-immune derived aggravated mast cells. He's upset with the GI symptoms and the biopsied gastritis and told me 'to keep a watch on it' until he gets more information from my urinalysis results.

So, I'm to take 2 180 mg of fexofenadine together in the morning and 2 zyrtecs together at night and it's ok to take my liquid dye-free benedryl during my 'breakthrough' times. I take Dexilant for the gastritis daily.

When I got home the office called to say that Quest Diagnostics stated they didn't get 'enough' of my urine sample to do one of the tests. I had filled that container UP with urine! Just this information is enough to make me have a reaction. They said the next time I had a reaction to come right in and give a urine sample.

So now what? The front desk person couldn't tell me if I needed to be off all the usual stuff for 72 hours before coming in. !@#$%&

I need a hug.

SweetTea

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