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Wow! Looks like I won the Rare Disease lottery too!!! (Read 4277 times)
phyre
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Wow! Looks like I won the Rare Disease lottery too!!!
12/02/11 at 05:41:53
 
Wow!  Looks like I won the Rare Disease lottery too!!!  

I must appoligize now for this and all future jokes I may make about this very serious problem.  The reality is something is going to get us all.  I made a decision early on to not let it stop me from enjoying what I can.  Grin

I have been suffering from alerigic reactions since I was 23.  My biggest complaint was that they caused migraine headaches, but there were lots of other allergy problems present like breathing and sinus issues.  I did not know what was causing my migraines for 10 years.  During that time I had migraines 24/7.  Life sucked!  I had no relief with any of the medications they had at the time.  I stopped going to doctors about it after about 3-5 years because they were no help.  I reacted to the medications, and when I suggested to a doctor that maybe the medications have a similar ingredient that I react to, that doctor told me that I needed to see a phychiatrist.  Whatever!

Later I figured out after countless elimination diets, that I was severely alergic to sulfites and sulfates.  Sulfites and sulfates are in all medications in small amounts, and are in all types of packaged foods.  It is impossible to stay away from them unless you know what foods contain them.  I could only eat from the produce isle and meat from the meat counter.  Life got better, but the migraines never stopped completely.

Then last year I broke out in this rash that would not go away.  The itching was so bad that I would scratch till I bled and bruised.  3 doctors and five months later, a doctor finally took a skin biopsy and I was finally diagnosed with cutaneous mastocytosis this year.  It is all starting to make sense now, but I really think it is more than just my skin.  The other allergic reactions have to be part of this somehow.  

I take as little medication as possible, but I am sensitive to others that do not have this luxury.  

Hope you are well reading this.  
Phyre
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Joan
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #1 - 12/02/11 at 15:28:27
 
Hi Phyre,

 Welcome to the forum!  I always think of it as the best club in which you wish you weren't a member!  Grin   Laughter is a good thing in my book!

  I want to respond to what you wrote about supplements, so I'll do that on your other post.  Glad you've found one doctor who has helped diagnose you.  I believe cutaneous masto can cause systemic symptoms.  Maybe someone with it can jump in here and tell you.  Have you been worked up for SM or MCAS?

  If you don't mind saying, who is your dermatologist in the Denver area?  I'm further south in Colorado but am trying to find a dermatologist who knows something about masto.
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #2 - 12/08/11 at 15:30:20
 
Hi Joan,

I was referred to Dr Maris at the Rocky Mountain Cancer Center. I really like him because he took a personal interest in helping me understand what I have.  He is a hematologist oncologist, and I also saw him listed under dermatology online somewhere- not sure why.

I need to find an allergist too.  got one?

My full diagnosis is cutaneous mastocytosis, but when I react I get pretty sick.  And when I have a lot of mass cells, I get a lot of migraines.



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Joan
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #3 - 12/08/11 at 16:24:35
 
  My local allergist is Daniel Soteres, and I think very highly of him.  But, he's only in Colorado Springs, Pueblo, and possibly Woodland Park.  The local masto support group chairperson recommended Dr. Weber at National Jewish Medical Center and Dr. Dreskin at CU Medical Center.  I believe that Dr. Dreskin directs allergy interns or residents at both places.  Both are knowledgeable about mastocytosis.

  Are you able to take any antihistamines?  If so, which ones don't contains sulfites or sulfates?

  Just curious, but did Dr. Maris do a tryptase test or a bone marrow biopsy?

  Thanks for the doc's name.
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #4 - 12/10/11 at 13:36:40
 
Thank you so much for the dr names!

I'm still trying to find antihistamines that I am willing to take everyday. I stay drowsy for 12 hours when I take hydroxizine (sp?). Zantac and Tagamet are good for heartburn.  I just bought some Allegra too. Clartin doesn't seem to work. I have my epi pens too, but I have never used one. A dr just told me yesterday that I can take them when I get a reaction that makes me feel dizzy, nauseous, and faint.  I rarely get short of breath.
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #5 - 12/11/11 at 11:09:22
 
Phyre;
Hydroxizine & Atarax are an antihistamine my old allergist used to prescribe (for my chronic hives) to be taken at bedtime- so I could
sleep with all the itching. They knocked me out too!
Allegra is a good one for daytime.
lori
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #6 - 12/11/11 at 16:38:30
 
Welcome to the forum! Have you tried a mast cell stabilzer like cromolyn soduim or ketotifen? I have tried both and I'm on ketotifen right now which is really helping me. The cool thing about both those is they are both compounding prescriptions so you can a lot of times can request no fillers just the medicine.
Melissa
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phyre
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #7 - 12/12/11 at 09:12:29
 
I haven't tried many meds.  I shy away alot, but I am going to get an appointment with the local allergist Joan referred me to.  That probably won't be until January.
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #8 - 12/12/11 at 17:08:57
 
I understand your reluctance to take meds, especially if you've reacted to them before.  I've had good luck with both Zyrtec and Allegra.  Now I take Zyrtec at night, and Allegra in the morning.  Allegra seems to be the least sedating fir me.
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Susan
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #9 - 12/12/11 at 19:09:32
 
Hi Phyre,

Welcome!! I understand your reluctance to take medications. I never took even an aspirin for over 25 years, and was very careful with my diet. Then my health took a precipitous slide, and I learned I sometimes needed more than healthy food. Finding the right medications for masto has been nearly miraculous for me.

I was a long term chronic migraine person, too. Fortunately we handled them prior to my diagnosis of masto. There are a huge, wide range of treatments that can help with migraine. If you react to most regular migraine meds, one you MIGHT be able to try is inta-nasal Lidocaine. You can get bottles of liquid Lidocaine without preservatives (therefore no sulfites). You draw up about 1 cc into a syringe, take the needle off, and slowly drip it into your sinuses. Sounds weird, but it numbs things out, and can interrupt the migraine. Obviously this is an RX process, but it is something you could ask about. If you wanted medical papers to take to your doc, I could look them up.

I'm suggesting this, as Lidocaine is something many people with mast cell issues can tolerate, but you would need to make sure that was true for you. Migraines are so debilitating!

If you can get your reactions under control, you will probably have fewer headaches. I used to think antihistamines didn't do anything for me, but I learned it was because I needed much higher doses than I had been taking. It is very individual, what works for each person. I can't tolerate Allegra, but Zyrtec plus Zantac works well for me, and ketotifen and Singular also have improved many symptoms. Even things I had no idea were related to allergic type reactions have improved. Hopefully you too will see improvements if you get on a better protocol for you.

The people here on the forum are great!! I woudl never have figured this out without them.
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Susan

Chronic Fatigue Syndrome/ Chronic neurological infections
Diagnosed with Mastocytosis August 2011
 
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phyre
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #10 - 12/13/11 at 09:45:58
 
So much good information!  I know that my migraines are directly related to allergys.  I got an appointment today to see an allergist at National Jewish in Denver.  Wish me luck.  Thank you everyone.
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #11 - 12/15/11 at 19:19:27
 
Hi Phyre!
I just want to welcome you here! I see you have found some great people with excellent advice.. I adore the people here, so caring and thoughtful... youre one of us now and we have your back Smiley
Huggles,
Ramona
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phyre
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #12 - 12/15/11 at 19:35:50
 
Thank you Ramona!  I really am feeling the love here!   Smiley  Thanks everyone!
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #13 - 12/16/11 at 14:18:33
 
Phyre:
Welcome to the forum. I have SM with my organ effected being my skin. I'm not sure we are the same. I have no migranes only severe skin sensitivity & pain similar to nerve pain. Do you have skin sensitivity? Although you do sound like a leaker like me not a shocker. I've never used an epi either in fact don't own one. Melissa is 100% right you need to get on Gastrocrom or Ketitofin. I'm on gastrocrom & it has made a difference. I too have problems with sulfites, that's why this time I'm going with Melissa's pharmacy in WS to try ketitofin because the regular contain cornstarch, very high in sulfites. I go with liquid meds when I can. Liquid tylonal works real good for me. You found a good & caring home in this forum, with people who have tried lots of things, I thank Melissa for her posts to stear me to her pharmacy for another try with ketitofin, which should be the right drug for me. Regular zrytec has no cornstarch, nor does singulair. Both drugs a lot of us take.
Good luck
MikeV
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Re: Wow! Looks like I won the Rare Disease lottery too!!!
Reply #14 - 12/18/11 at 03:04:36
 
Hi Mike

I did not know that you could have systemic masto, and yet only have it in your skin.  Mine has only been proven to manefest on my skin, so they could only confirm that it is cutaneous masto.  That went into a somewhat dormate state after I went on prednosone for a few weeks and I started taking 3 antihystamines per day.  I still itch a lot with few rashes.  When I have a bad allergic reaction, my blood pressure drops, I feel dizzy, and I get nausia.  The anesthesiologist says that is anaphylaxis, but thank goodness I rarely get short of breath.
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