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feeling blessed to be with you! (Read 2435 times)
HeatherM
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feeling blessed to be with you!
02/08/13 at 09:57:26
 
Hi!  Is it possible to feel shy online, but not in person ha, ha!  I'm so happy you all have shared a bit of your experiences with me.  There have been many "Ah ha!" moments recently while reading what others have been going through, and medical articles you share.
     I am a stay at home mother of 2 little ones.  My family, friends are incredibly supportive.  I have been lucky that I had non-masto-expert doctors who recognized something unusual was going on, and sent me in the right direction.  After blood testing, allergy testing,  intestinal biopsies and BM biopsy, they have honed in on the problem.  I have an overabundance of mast cells in my duodenum and colon, but clean bone marrow.  The medicines have been a game changer for me, especially after going to 2 amps 3 times a day of the cromolyn sodium.  I am learning about my triggers, but they are mostly stress, whole grains and yeast.  It was a huge sigh of relief to finally know what was causing these knock down drag out fights with my digestive system.  I should have asked a doctor years ago, but I waited until getting surprised by anaphylaxis to take that step.  
        I have a question about something I have scanned the forum for, but don't see a topic on.  Does anyone suffer from insomnia/ or a little restlessness in the legs at night?  I hate to blame everything on my mast cell house party.  (perhaps there is a convo about this that I may have missed). Anyway, it is a great day to be alive and loved, hope I can be a supportive new friend to you all.
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Joan
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Re: feeling blessed to be with you!
Reply #1 - 02/09/13 at 07:46:54
 
Hi Heather and welcome to the forum!  Sounds as though you've gotten a lot done before you arrived here, and that's great that you found a doctor who could pin down the problem!

My GI doc treats a lot of patients who have this, and his recommended regimen includes Gastrocrom or Ketotifen, probiotics (esp. VSL#3), and  antihistamines, especially H2s.

Yes, some people have insomnia or trouble with sleep onset and restless legs, too.  The first thing usually tried is H1 and H2 antihistamines.  Epsom salts baths or foot soaks might help.  The magnesium seems to be calming.  It helps me with muscle cramping, too, which I get in my legs sometimes at night.  Best to limit it to 20 minutes, though, because it can cause GI symptoms if you get too much.  Calcium might be helpful, too.  If that doesn't help enough, some people use stronger meds, even Neurontin in some cases.
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DavinaRN
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Re: feeling blessed to be with you!
Reply #2 - 02/10/13 at 01:22:03
 
I have lots of trouble going to sleep.  At one time I blamed it on age (43 now) and started taking melatonin. I still take 5mg some nights, but then again only known about mast cell issue a month so still working out triggers.  Smiley
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DeborahW, Founder
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Re: feeling blessed to be with you!
Reply #3 - 02/10/13 at 01:45:14
 
I personally never have problems falling asleep. In fact, once my head hits the pillow, I am asleep. I figured that was a result of the antihistamines.

I have a suggestion for your legs. My daughter is an athlete and told me that her leg often feels like a rope is tightening around her thigh, and that at night her legs bother her and she needs to stretch them. I mentioned this to her coach, and he said that she needs to eat more potassium (bananas) and drink more water. Well, she has been eating a lot more bananas, and the leg cramps are gone. So, perhaps that would help you....worth a try!
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Riverwn
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Re: feeling blessed to be with you!
Reply #4 - 02/10/13 at 07:53:53
 
Hi Heather, and welcome to the board!! Im thrilled you have found your way to us and that our posts have helped you feel better Smiley Im much like you in that I dont have an expert DR but I do have a DR who has read about Masto, knew about it at a small level and is willing to listen to how-to and new research on it. That helps so much!!

Yes, I have leg cramps at times. More often, I have Restless leg Syndrome (RLS) and I take Neurontin for that and for Neuropathy. Our nervous system is affected by mast cells misbehaving--the nervous system relies on electrical impulses for communication and mast cells frequently make those impulses short circuit, causing problems. That also is the cause for our "brain fog". I take Vistaril for that (and for my bladder spasms) and it certainly helps. I take one at night and it has effected my RLS and Neuropathy (really well), so I sleep so much better now.  Yes, I also have problems with insomnia--but that seems to be resolved with my night meds of Neurontin and Vistaril. Talk to your DR about this and see what they say. Wishing you much luck and great days Smiley
Hugs,
Ramona
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~~~Count  Your Blessings!~~~
 
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HeatherM
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Re: feeling blessed to be with you!
Reply #5 - 02/11/13 at 13:26:32
 
Wow!  You ladies are great.  I will definitely ask my Dr. about some of the medicinal suggestions.  I am already on the common 4 meds Montelukast, Ranitinide, Levocetirizine, and Omeprzole.  They have been helping with most symptoms so far, but these other ideas might really help with the nightly leg wiggles.  It is almost painful to get them to be still, so I'm open to all suggestions.  I currently have this regimine of changing my clothing in the middle of the night each time the urge to move builds up too much, but perhaps I should be running for a banana (I am fortunate to be able to eat those.) I am also looking forward to giving my husband a reason I need to take a salts bath, hopefully without my toddlers busting down the door ha, ha!  The calcium/mag liquid I am going to take tonight, duh, I say to myself, I would give that to my daughter when she had troubles sleeping... But maybe a small amount as a tester... I seem to be able to take supplements without problem, but I'm not inviting catastrophe, either haha!

Thanks,
Heather
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