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The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition! (Read 29716 times)
Gumby
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #15 - 12/28/12 at 03:47:09
 
Well this is the pits!!! I am still waiting for a carcinoid work-up!!! I know they are slow growing but I am miserable in the mean time! Afrin is sure it is MCAS as I have had some symptoms for my entire life but the early morning waking like  someone blasted a bullhorn in my ear and I am wired to the  nines & can't get back to sleep for hours is new. So is the flushing with red wine. My internist does not have admitting priveleges to local hospital so & thought I was going to crash so that was why she was going to ship me off. Now we are going to work with local docs. I have appointment with a gastroenterologist on 1/8 to work up abdominal pain ( also a new symptom) she is supposed to be conferring with my endo. Don't get sick around the holidays! I am so tired. I go 2 weeks or so with the shaking wired and tired and then crash for a few days sleeping12-14 hours a day or more then the cycle starts all over. Afrin changed me to Claritin and Pepcid which has helped a bit but I am still miserable most of the time. I have been like this for a year and can't take much more! I have to fight to keep weight on because of the nausea and fatigue. I am evidently reacting to chicken too now, one of my safe foods. Did I mention that I have a mutli nodular goiter? They did a needle biopsy months ago but I am not convinced that there is not a tumor there since they saw tissue that was outside of the thyroid on ultrasound that they could not identify- thought it might be parathyroid tumor but Valium level were normal. Carcinoid? Who knows?! I do think I have MCAS  but maybe both?
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Joan
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #16 - 12/28/12 at 17:14:21
 
Several people have Hashimoto's thyroiditis as well as MC disease.  But, it sounds as though this sounds like an excessively high thyroid level rather than low, and that should be checked out if it hasn't already been.  If you haven't seen an endocrinologist, it seems like it's time to see one. There may be some other endocrine problems that can be ruled in or out, too, such as pheochromocytoma.  Of course, bursts of adrenalin can be associated with MC disease in response to degranulations.

If you've been seeing an endocrinologist, then I'd recommend a second opinion at a major medical center.

Another thought would be to set an alarm for an hour before you are usually awakened by symptoms and take an H1 and H2 antihistamine.  Sometimes our meds wear off before the expected 8 or 12 hours, and symptoms can occur.
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Joan
 
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Gumby
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #17 - 01/05/13 at 04:18:47
 
My first question is why I am not getting email notifications? I have it checked. Is there something else I need to do?
My local doc seems to be completely baffled by my increasingly severe symptoms and is basically taking direction from me. She has scheduled and cancelled both  a CTScan with contrast ( I have anaphalactoid reaction to contrast ) an MRI of abdomen and pelvis and basically said just wait until you see the gastroenterogist on Jan. 8. I finally asked her to draw plasma metanephrines as this should be definitive for a pheochromocytoma. In the meantime, I have been waking @3-5 am feeling angry,( but no anxiety like a panic attack) heart pounding,headache,  abdominal pain, shaky. I finally took my blood pressure the other night when this happened & it was 160/110- my normal is usually 90's / 60's. Yesterday I had a bizzare headache that would not go away despite taking max amounts of narcotics and imitex. Then it just left. I am scared. Does this sound like any mast cell symptoms? What would help this? I am desperate and my Dr. is lost but concerned.  :'
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Lisa
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Re: The Carcinoid Syndrome - The Differencial Diagnosis to Systemic Mastocytosis - Know the competition!
Reply #18 - 05/15/14 at 12:43:14
 
Hi Gumby, I'm sorry it's going so hard for you right now.   It's definitely NOT EASY living with this disease!!!!  

It sounds to me like you are in a masto flair, which happens to many of us when the disease is coming out of it's hiding place and making itself known.   Until you are on the right meds and can get it to calm down, things can keep getting worse.   Been there, done that and boy is it the PITTS!!! Tongue


And yes, your reacting sounds very similar and I've gone through some of this too.

It's important that testing be done for carcinoid syndrome and basic blood testing should be enough to rule in or out that cancer.   But masto is not so easy to diagnose because the tests are not reliable for us - some of us show the elevated markers for masto and others of us do not.   Each patient is different and it depends on the form the patient has and the stage he's in and then his own genetics.   It's a tough disease to diagnose!!!

As to the hypertension, there exists a rare variant form of masto which elevates the BP.   The article is called the Biochemical Diagnosis of Mast Cell Disorders and can be found at this link:  http://www.nature.com/jid/journal/v96/n3s/full/5612609a.html      which indicates this form and should be enough to help your doctors.  There are more and you need to google Hypertension & Mastocytosis and then you'll find a couple or so.  

I have had my pressure go sky high with contrast - up to 220/110!!   You MUST premedicate in order to do any kind of invasive testing or medical procedures which use contrast.   If you go over to the section on PROTOCOLS you will find a copy of the REMA protocols and your doctor needs to see these and pre-medicate you prior to any kind of scans which use contrast.  

As to narcotics - THESE ARE MAST CELL DEGRANULATORS!!   They are definitely NO NOs for us as that most of us react to them big time.  Opioids and their derivitives, etc.   NO'S!!!! Shocked

As to feeling angry, yes, even this has been seen amongst us because the mediators create these problems in that they influence our brain and cause issues with it regarding our emotions.   It's called Mixed Organic Brain Syndrome and it's proven connected to mastocytosis in all its forms.   http://www.ncbi.nlm.nih.gov/pubmed/3749421


So, yes, all that you are describing can indeed be part of masto!!!  Whether or not you have it depends upon your testing!


Now, as to the email notices, if you will notice when you open up a new post to comment there are some boxes below the smiley faces and it says this:


Attachment 1:
Notify of replies:      Check this if you wish to be notified of replies to this topic.
Add to your Favorites:      Check this if you wish to add this topic to your Favorites
Disable Smilies:      Check this if you'll be adding code (or don't like smilies).


So, if you check the box that goes to being notified of the replies then you will get a notice in your mailbox.  


I hope this helps!!!


Lisa Smiley



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Donīt forget, there is so much more to life than being sick!
 
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