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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> kimtg68 NOT carcinoid update http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1296918053 Message started by kimtg68 on 02/05/11 at 03:00:53

Title: kimtg68 NOT carcinoid update
Post by kimtg68 on 02/05/11 at 03:00:53

Good morning friends! Long time since I've posted. I wanted to update you all on my health issues and where I am now. For those who are new, here is the quick update: I came to this place looking for answers for I felt like I shared many symptoms and issues that others on here have experienced. I requested a test for carcinoid, CgA, and it came back elevated. However, I learned that because I was taking Nexium that this drug could elevate my test results. So the oncologist I was sent to due to this test result told me to stop taking the Nexium and retest, which I did and it was still elevated. So I was then sent for CT scan and Octreotide Scan. CT scan found enlarged lymph nodes and calcification of lymph nodes, which the doctors feel are within the norm but nothing else was found. I was not satisfied that the current doctors I was seeing were knowledgeable enough about Carcinoid so I sought out the experts in New Orleans, Dr Boudreaux. He and his partner Dr. W (can't remember his name) told me I needed to stay off the Nexium LONGER and retest and he also gave me a list of other blood work to have done. I did all this and ALL tests came back normal. SO although there is no immediate risk of having Carcinoid any longer (I will have to retest in 6 months just to be sure) I am now back to searching for answers to my MANY unexplained symptoms. Well at the point that Carcinoid took a back seat my family doctor also pretty much gave up on me and suggested that I seek acupuncture. OMG! Fired them and sought out a new PCP/family doctor. I am SOOOO blessed to have found a doctor that believes in me and has promised to stand with me through this until answers are found. My NEW discoveries through this new doctor have been leaps and bounds considering the dead stop I was at with my old doctor. I had my first appt with new doc and submitted all my records and a list of symptoms. He asked for 2 weeks to study and research this and come up with a plan. During those two weeks I ended up with the biggest, most painful kidney infection I have ever had. I tend to get kidney/bladder/UTI infections a few times a year. So I had to return to my new doc before the agreed 2 week study period. He tested my urine which showed blood and put me on an antibiotic and sent in a urine culture (since I've been known before to show blood in my urine but NO bacteria). This time was different. I had the blood in my urine, I was not responding to the first or second antibiotics he tried (both different types of antibiotics). So each time I was going in with this kidney issue he was noticing my heart rate was way too high. I had shared this with other doctors and even started my own blood pressure/heart rate diary from back in Sept. 2010, but no doctor took me seriously. So my new PCP hooked me up on the 24 hour Holter Monitor. Finding: Tachycardia. So I'm on Toradol heart meds now. Urine culture finding: E. Coli (I didn't even know you could get E. Coli of the kidney) so now on new antibiotic that is not resistant for E. Coli. He also sent me for blood work to check out my thyroid. Finding: Low thyroid (but just ever so slight) (I think I read somewhere that having my ovaries out last Oct. could have something to do with that).
New doc is starting to see proof (also he saw my rashes in full swing)that my symptoms are real! FINALLY! He is sending me to Vanderbilt Hospital in TN to see two different docs; a gastroenterologist and a rheumatologist. I saw the gastro yesterday and that was a flop but that's ok. I didn't expect the gastro doc to have my answers. I've had two colonoscopies, scans and gobs of blood work and he feels like I've been gone over with a fine tooth comb and that's enough. WE ALL know when we do not feel well and we do not have the answers that IT IS NOT ENOUGH! So I will hold out for a month and wait for this appt with Rheumy doc. I do not think I'm going to wait quietly, however. I believe I'm going to attempt to contact him with a non-emotional letter and copies of my records/symptoms and a question/suggestion to consult with known Mast Cell doc's there at Vanderbilt so he has a chance between now and my appt first week of March to study and consider. Any suggestions to content of this letter are GREATLY welcomed :)
So that's the sum of what's been going on. I've already typed a book here so I will catch you all up on other things, ie: my mother-in-law is still living with us (HELP! :P). I will do my best to get back here more often. Life is a bit crazy so I apologize if there is a delay in any responses from me. I MISS YOU ALL!

Kimmy

Title: Re: kimtg68 NOT carcinoid update
Post by Riverwn on 02/06/11 at 06:22:19

Woohoo Kim, thats great news!! Youre going in the right direction, just take care of YOU for us and know we love you and are thinking of you!!
Hugs
Ramona

Title: Re: kimtg68 NOT carcinoid update
Post by Joan on 02/06/11 at 17:40:25

Happy to hear that it's not expected to be carcinoid! Hope they figure it out soon, but glad they at least understand the kidney problem now.

My friend was at Vandy last fall and was VERY impressed with her care. She went for rheumatology (lupus) and ended up in cardiology, too.

Good to hear from you!

Title: Re: kimtg68 NOT carcinoid update
Post by Lisa on 02/06/11 at 23:04:30

I hope Kim gets the inside tour of the ENTIRE PLACE!

Yahooo Kimmy!!! KEEP PRESSING FOR THOSE ANSWERS MY FRIEND!!!!
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