Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Latest info can be found on the YaBB Chat and Support Community.
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
scared, feel like this is getting worse (Read 6269 times)
Godsgal
Tutor
**
Offline


I Love YaBB 2!
Posts: 66

scared, feel like this is getting worse
05/09/11 at 09:59:54
 
Hello....newer here to the forum but I'm getting more active on here.  I'm newly diagnosed with cutaneous masto and have had some severe symptoms that came on me suddenly when I was living in a house with toxic mold.  I have POTS that came with that too.

I just started my new meds....claritin 10 mg & pepcid 40 mg twice a day.  I'm reacting every day now whereas before I wasn't!!!!  My clothes, bras, everything is bugging me.  I'm numb, tingling in my neck, throat, hands, back.  I feel numbness everywhere!!!!  It started in my face a few days ago and now it's spreading other places.  My throat, hands, arms, and back now.  I have a sinus infection too.  WHAT GIVES????  When I stretch my muscles, it exacerbates the tingling.  I'm struggling emotionally, mentally, spiritually.  I want to run and hide but I know that won't help.  I need help!!!!!!  I'm desperate!!!!  Scared to cry because I don't want to trigger anything.
Back to top
 
 
IP Logged
 
Riverwn
FORUM MODERATOR/ADVISOR
*******
Offline



Posts: 993
Gainesville, Florida
Re: scared, feel like this is getting worse
Reply #1 - 05/09/11 at 12:45:44
 
Hon youre gonna be ok.. I promise. Think back.. when did the tingling start? What med was added just before it? Stop that med for a few days. Give me a list of what you are on now--and remember whenever you react ADD A DOSE of something you know will work--like Benadryl or Vistaril. PM me anytime you want ok?? Im usually home Smiley
Hugs
Ramona
Back to top
 

~~~Count  Your Blessings!~~~
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: scared, feel like this is getting worse
Reply #2 - 05/09/11 at 17:57:45
 
If you have a sinus infection, the bacteria can cause mast cell activation.  If you're taking antibiotics for it, you could be reacting to that.  You could be reacting to the antihistamine or other ingredients in the pills.  As Ramona says, work your way backwards through your meds and see if any one of them is causing the problem.  You might also switch to a dye free liquid Benadryl should be okay for you if you're not allergic to Benadryl.  There is also a dye free liquid Zyrtec.

Ramona, isn't tingling and numbness a symptom of B12 deficiency, too?  

Let your doctor know what's happening, and ask for suggestions from him/her.  If you need something to relax you, ask for it.
Back to top
 


Joan
 
IP Logged
 
Susan
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 211

Re: scared, feel like this is getting worse
Reply #3 - 05/09/11 at 21:13:34
 
Are you still living in the house with mold? Mold exposure can cause some of those symptoms, too. If you are one of the 25% of the population genetically susceptible to molds, you may not get better just by moving away from the mold. It can trigger your immune system in a way it can't turn off without help.  The numbness and tingling is a very common symptom in that.

Just like with masto, not all doctors know about treating mold exposures. If treating your masto doesn't help with these symptoms, it may be something to look into.
Back to top
 

Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
IP Logged
 
ruth
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 208

Re: scared, feel like this is getting worse
Reply #4 - 05/10/11 at 00:10:36
 
Susan, how do you know if you are one of those 25% susceptible to mold? And I take it you don't mean allergic to, as in an IgE mediated reaction?
Back to top
 
 
IP Logged
 
Riverwn
FORUM MODERATOR/ADVISOR
*******
Offline



Posts: 993
Gainesville, Florida
Re: scared, feel like this is getting worse
Reply #5 - 05/10/11 at 05:11:32
 
Joan, yes it is. He might need some testing done to see where his body is at right now--just basic blood work type thing. Hope you feel better soon!
Ramona
Back to top
 

~~~Count  Your Blessings!~~~
 
IP Logged
 
Susan
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 211

Re: scared, feel like this is getting worse
Reply #6 - 05/11/11 at 14:32:12
 
Hi Ruth,
The test is for HLA typing, done at Labcorp. You can read about the test here. http://www.survivingmold.com/diagnosis/lab-tests
You are right, it isn't talking about IgE mold allergy. It is considered a toxin in this case.

You can read more about the whole issue of mold at http://www.survivingmold.com/
I know, and have worked with Dr. Shoemaker. Things are not always as easy as he says, but I have seen his treatments help a lot of people. He doesn't always acknowledge that there may be other problems involved, so you have to advocate for yourself, but if you have mold issues, he is one of the best. He will often consult with a physician if you have one who is open to considering it.
Back to top
 

Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print