Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Latest info can be found on the YaBB Chat and Support Community.
  HomeHelpSearchLogin  
 
Pages: 1 2 
Send Topic Print
Scurvy, hives, esophagus spasm, heartburn, #3, Migraines (Read 11127 times)
phyre
Tutor
**
Offline


Keep believing it can
get better.
Posts: 62
Denver, CO
Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
11/05/12 at 18:21:52
 
I have been having all sorts of fun lately.   Wink  I have only been diagnosed with cutaneous masto, but sometimes I wonder if something else could be going on.  My bone marrow biop was normal.  I tried going to one of the masto doctors in my state, but when I went to my appointment, the dr refused to see me.  He only sees systemic masto patients.   Shocked

I do have a fabulous primary care physician who does his research though, and my hemo/oncologist is superb.  I just haven't found an allergist.  

Does anyone else have an absorbtion problem?  If I don't take atleast 3,000 mg of Vit C per day, I get scurvy so bad that my nose bleeds all day, the skin on the top of my mouth literally rolls off, and my teeth are so temperature sensitive that it hurts to breath through my mouth.  Doctors agree, it is scurvy.  

Lately I have had been getting hives again.  I have about 12 right now and rash almost everywhere else.  I don't know what brought them on because I am eating low histamine foods.  I have been eliminating foods that make my neck hurt and sinus swell.  When my neck hurts and my sinus swell, I get migraines.  The good news is I am having less migraines.  Yeah!   Cheesy  

So last week I must have messed up my esophagus swallowing one of those big-fat-horse-pill vit Cs because it swelled up so bad that I had to skip a couple meals.  I almost went to the ER.  I also felt these little nodules in my esophagus for about 5 days.  I don't know if this could be heartburn related, so I decided that I need to be better about taking my meds.  

Speaking of taking meds.  I hate taking meds, and I don't really take them.  I have zantac around, but as soon as it wears off, I have worse heartburn than I had before I took it.  I also have Hydroxyzine but it dehydrates me so bad.  I know I should drink more water, but that turns into more heartburn...and around and around we go...  I also keep my epi pen around.  I have never used it, but a few times I have gotten close when my blood pressure dropped from a reaction.  I don't feel any benefits from any other recommended antihistamines, so I don't keep any of them around.  

Then I also get the mystery #3 bowel problems.  Sometimes I know what starts it.  I feel a reaction, and then there is an exit party.  No fun.  

Any thoughts?  Suggestions?  Lectures?  I'm listening.  (Sorry for being gone so long)
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #1 - 11/05/12 at 19:53:19
 
I'm wondering which doctor wouldn't see you?  I asked the nurse at National Jewish in Denver if Dr. Weber sees MCAS patients, and she insisted he does.  If he's not the one you didn't get to see, then he might be a possibility.

It sounds as though you need someone to help you get on a regimen of antihistamines (H1 and H2) to help control your symptoms.  I know you hate taking meds, and you're in good company in that regard!  I don't think anyone likes taking meds.  The problem is that meds are the only things that control symptoms, so usually it's a choice of feeling bad or taking meds.

Are you using Ester C?  It's not perfect, but is a lot easier on the stomach than other types.  I wonder if the vitamins are causing some of your symptoms.  It sounds as though you have pretty bad reflux, so you might want to try some Prilosec or another PPI for a while.  It could have been caused by irritation due to the Vitamin C, but it also could be mast cell related.  Too much vitamin C can also cause lower GI issues.  I'd talk the vitamin C over with your doctor if you think it could be causing trouble.  Some people have good luck getting vitamin C infusions.

As you already have figured out, CM can cause systemic symptoms.

If you have a good hematologist/onc in Denver, would you mind posting the name so others can see him/her if needed.

So sorry you're having all this trouble....
Back to top
 


Joan
 
IP Logged
 
MarciaB
Guiding Light
***
Offline


Life is Good on MC meds!

Posts: 146

Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #2 - 11/05/12 at 21:23:36
 
Hugs. This sounds painful. Have you eliminated gluten ? Celiac disease causes malabsorption. I don't trust the biopsy tests anymore unless they're positive because I've met too many people who tested negative for years before getting a positive result. Other blood tests seem reliable tho. The info is on the gluten free and beyond website under gluten free 101.

Btw, there's a well known rash, dh, associated with gluten intolerance.  

Gerd is common for food intolerances like gluten or dairy. Fwiw, I really don't know why we're allowed to eat these. There's so much info on the web now that explains why these are bad.

Are you taking second generation h1s ?  Zyrtec ? Allegra ?

Hope you feel better soon. Tc .. Marcia
Back to top
 

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...    
 
IP Logged
 
phyre
Tutor
**
Offline


Keep believing it can
get better.
Posts: 62
Denver, CO
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #3 - 11/06/12 at 01:47:07
 
Thanks you two.!  I did not go to Dr Weber, but I won't post the name.  (It is against the rules!)  I will call Dr Weber's office today. I know there is a three month wait, but that is ok.  

I might swith to back to tagament for an h2 blocker.  Zantac does not seem to calm things down mcuh for me.  Sometimes it takes hours to work.  I am using a non acidic bufered vitamin c, and I have not changed the brand or dose in about a year.  The hives just started two weeks ago.  I could try switching to ester C.  I can't stop taking C because my nose really will not stop bleeding all day and night.  

I have not found an H1 low on side effects that actually makes an improvement in my life, but maybe I will try again to go through the h2 options again.  I had to take prednisone to calm down a full body rash of hives like this 2 years ago, and I don't want to do that again.  

I went Gluten free before, and I reacted to some of the gluten free grains - like Quinoa, and amaranth.  I have the same reaction as I do with foods that are high histamine - like squash.  I could cut back on grains though.  They promote heartburn.
Back to top
 
 
IP Logged
 
MarciaB
Guiding Light
***
Offline


Life is Good on MC meds!

Posts: 146

Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #4 - 11/06/12 at 04:14:53
 
I've been grain free for 4 years now and only get heartburn if I get carried away and eat too much of anything at one time. Grains just make me feel weird. I'm ok with flax, coconut, chia etc tho.

You may want to look at the Wahls diet. Her info is on the web.

I'm not taking any h2s yet. Just h1s. I'm wondering if those of us on a paleo type diet need these.

I've heard about the h1 h2 connection but honestly can't bring myself to take anything that reduces stomach acid. I'm waiting to hear what my doc says about this.

You may need to experiment with different h1. I'm using Wal-zyr
(Walgreens zyrtec tablets) during the day because it makes me the least drowsy. I've tried 6 different h1s now.

Hope you feel better soon. Marcia
Back to top
 

CFS,FM,Celiac,Ataxia,Dysautonomia,Paget's,Seizures,PelvicPain,Hyperinsulinemia ...Responding to Wahls diet, supps and MC meds.. kow ...    
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #5 - 11/06/12 at 18:27:52
 
About the H2 antihistamines, I'd recommend Pepcid before Tagamet.  I think I read that Tagamet isn't a good choice for MC disorders.  If you can take Pepcid, you might want to try the 10 mg. first and see how that works.  Then move up to 20 mg.  I take 10 mg. in the a.m. and 20 at night.  Most people take 20 mg. a.m and p.m. And some need 40mg. To get relief.  Pepcid Complete has a quick acting antacid in it, too.  Of course, check with your doc before starting any new meds.

I think you might be having trouble with stability of your symptoms because you're not taking daily meds.  In most people sporadic meds aren't enough to keep things stable.

Do you stop eating anything at least 2 hours before bed?  That's recommended for helping reflux.

Debbie can correct me if I'm wrong, but I believe that it's okay to post your experience with a doctor, and name him/her, or a doctor's office/staff.  Trashing a doctor here would be inappropriate, though.  It's important for people to know not to waste their time trying to see a doc who doesn't treat their problems.

I'm going to try to reach Dr. Weber's nurse tomorrow and find out if he treats patients with CM.  they might have a different department that sees those cases.  I'll post anything I find out.
Back to top
 


Joan
 
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #6 - 11/07/12 at 01:07:13
 
Phyre,

It is NOT against any rules on this forum to post which doctor refused to see you or of your experience with that doctor/doctor's office. We, in fact, encourage it, as this forum is designed so that we may all learn from others' experiences. I would encourage you to share that information.

In regard to how you are feeling. We can definitely feel your pain! Just last night I had all these fun plans for my family to have a fun "watch the election" party, and I got soooooo sick before it even started! Diarrhea, extreme fatigue, beet red flush, and felt fluish. What the heck! Needless to say, I couldn't make all the fun little snacks I had bought for my family and instead just laid on the couch with my husband and watched election results (which turned out very good in my opinion!).  Anyway, the thing is that you are describing classic mast cell symptoms. You may not like taking medications, but do you like being extremely sick? I was entirely anti-medication before I was sick. Then I got so ill that I just decided that I had to try something! So, I followed the doctor's advice and started daily antihistamines (zantac, allegra, and zyrtec). I had absolutely no confidence that the meds would work; I was totally skeptical. So, it was my very pleasant surprise that they worked in an amazing way! Therefore, my word of advice is to consider which you prefer: no meds and feeling ill or taking meds and feeling better? Sometimes we just can't hold on to our original thoughts and we need to adapt.
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
phyre
Tutor
**
Offline


Keep believing it can
get better.
Posts: 62
Denver, CO
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #7 - 11/08/12 at 02:34:33
 
Thank you all so much everyone.  I am going to start one med at a time again.  In the past I have taken meds.  I had hives twice as bad as this before, and I had to go on prednosone, and I took the maximum of H2 and H1s until they went away.  It took months.  I don't want that again.  I am going to try pepcid.  That is a new one for me.  I need to be able to drink more water, so I need to attack the heartburn problem first.  Then maybe I will take hydroxizine at night.  

The good news is I am down to 8 hives from 12.  I have been using dead sea mud soap...ahhh so soothing.  Then I put baking soda all over.  Sometimes I mix it with jojoba oil to make a paste.  I started taking Bentaine HCI 350 mg again.  This is a supplement than helps  little with heartburn, but I still need a little more help.

I really need to go grain free too.  It is a tough thing to do.  I don't feel full enough when I don't eat grains, but perhaps there is another trick.  Daily problems wth #3 are ongoing which leave me feeling hungry too.  

So the mystery doctor is Dr Dreskin.  Apparently, he does not see CM patients, but they did not tell me that till I got to the office.  I was upset about this because I had taken time off work to see him while he was in the office.  I waited weeks to see him.  The doctor that did see me was knowledgable, but I came to see a doctor who should know more about masto than almost any other dr around.  Dr Dreskin does see SM patients, but I cannot say whether or not he sees people with other mast cell diseases.  I will post this later on under the doctor section of the forum.  

Thanks again everyone.  I will be a good CM patient and try some other meds.   Smiley
Back to top
 
 
IP Logged
 
femaillady
Rookie
*
Offline


I Love YaBB 2!
Posts: 12
Colorado
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #8 - 11/08/12 at 13:26:19
 
I know that Dr. Dreskin sees patients with diagnoses other than SM because that is who I see.  My local allergist/immunologist sent me to him for my official diagnosis of MCAD.   (Maybe that is close enough to SM to count?)   He started me on my meds which seem to keep everything under control.  We discussed it and decided not to do a bone marrow biopsy unless things got worse, since it wouldn't change the treatment at this point.  University Hospital is a teaching hospital and he always has a med student with him, but he has always taken time with me and answered all my questions.   I would hope he is like that with all of his patients.
Back to top
 
 
IP Logged
 
Doozlygirl
Mentor
****
Offline



Posts: 262
Wisconsin
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #9 - 11/08/12 at 15:42:10
 


To add to Joan's comments:  About the H2 antihistamines, I'd recommend Pepcid before Tagamet.  I think I read that Tagamet isn't a good choice for MC disorders.

Tagamet and generics inhibit DAO, one of the two major enzymes necessary to breakdown histamine.  Tagamet is also known to interfere with common chemical breakdown pathways in the liver contributing to drug intereactions between of various medications, many often taken by mast cell patients.  Tagamet is listed quite often in medication packet insert in the drug to drug interactions section.

Lyn
Back to top
 
 
IP Logged
 
iamnotalone
Tutor
**
Offline


I Love YaBB 2!
Posts: 35

Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #10 - 11/18/12 at 17:42:26
 
Hey Phyre;
I've been having issues getting in here for a few weeks, so now I can finally add my two cents  Cheesy
How do they test for scurvy ? is that basically a major deficiency of vitamin C? I have similar problems - the extreme sensitivity to tempurature - coffee & salad are torture, unless I let one cool down or one reach room temp.  Grin My mouth & gums are very tender also. I have been trying to take 1-3000 mg of C a day, But... I had a sore throat for 3 days from a broken vitamin C that got lodged & nearly choked me  Shocked   Unfortunately I had just bought a huge bottle from Sams, so am "stuck" til they are gone , & can get the powder or another form. SO, here's a solution that works, it's icky  Tongue, but helps: take the C caplet, break it into small pieces, & swallow with a cup of warm tea/coffee. It'll start to dissolve so you can swallow it easier. Ya it doesn't taste the greatest, but it's better than the alternative- I guess  Undecided
Good Luck  Smiley
lori
Back to top
 
 
IP Logged
 
phyre
Tutor
**
Offline


Keep believing it can
get better.
Posts: 62
Denver, CO
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #11 - 11/19/12 at 18:57:12
 
Hi Lori,
Yes, what you described sounds like what I get.  Sorry to hear about the broken tablet.  Ouch!  I never had a doctor "diagnose" scurvy or test for it.  I think the test is, if the symptoms go away when you take vit c, it is scurvy.   Wink  For the longest time I did not know what it was, and I asked a bunch of different doctors.  They did not know.  Then I realized that vit c made it go away.  Since then I have told the doctors I go to that if I don't take at least 3,000 mg of vit c, I have all X symptoms.  Then I asked them "that is scurvy, right?" And they agreed.  Mal-absorbtion issues go hand in hand with immune system disease, so the doctors I have told are not surprized.  

I guess it would be reassuring to know for sure.  When it first started for me, I was worried I might have cancer because I had these strange lesions on the top of my mouth.  That was five years ago, so I am pretty sure I'm ok.   Smiley  And since I can make it come back by not taking my vitamins, what else could it be?  

The powder sounds like a good alternative.  

Fortunately, my hives are starting to get better.  They are still there, but I don't have the "can I tear my skin off now please" itch anymore.  I realized that all the hives are centered around lymph nodes.  Sometimes one spot gets better and another one flares.  I started eating more onions and adding lemon to my water and that is helping.  I tried taking pepcid, but that isn't strong enough.  Neither is Zantac.  I think I will go grain free after the holidays are over.  Hopefully my body won't force me to go grain free before January 1.
Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #12 - 11/19/12 at 20:44:28
 
My doc prescribed 40 mg. Pepcid for me when I was in a big flare.

Vitamin C pills can be ground into a powder in a spice grinder.  Then it can be mixed with any cool or cold food.  Heat destroys it, though.  Until I found out about Ester C, I'd mix it with pudding or fruit yogurt or put it in a smoothie.
Back to top
 


Joan
 
IP Logged
 
iamnotalone
Tutor
**
Offline


I Love YaBB 2!
Posts: 35

Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #13 - 11/20/12 at 04:45:46
 
Phyre;
Don't forget, the issue with the mouth lesions could also be some "oral allergy reactions" too. For example, pineapple makes my mouth & toungue burn.  Have you tried the Emergen-C brand podered packets ?
I think they are a bit pricey, but they have em at Sam's Club. tThey are Flavored. There is also a product called Zip Fizz, they don't always carry that one tho.  Glad to hear about your Hives ! Before I was diagnosed, I had hives for almost a year straight ! Former allergist didn't look into anything, just wrote out scripts, & said "oh, you have dermatographism".
CAUSE (s) Please ?! I had along road to go. I did figure out one of my triggers was the Motrin I kept taking for the unexplained headaches  Roll Eyes
I'd get hives like minutes after taking it. I switched laundry soap, & some other things too, but  I am SO thankful for this forum. It filled in a lot of "gaps" for me on the road to getting stable!
good luck sweetie  Smiley
lori
Back to top
 
 
IP Logged
 
phyre
Tutor
**
Offline


Keep believing it can
get better.
Posts: 62
Denver, CO
Re: Scurvy, hives, esophagus spasm, heartburn, #3, Migraines
Reply #14 - 11/20/12 at 15:51:44
 
There are so many clever ways to take vitamin C!  Wow!

I will check with my doctor about the taking more pepcid.  

The lesions are not like canker sores.  I get those.  Canker sores are brought on by eating citrus fruit. and they are usually white raised bumps.  This is different.  The skin is soft and literally peeling off.  The skin gets very thin.  The lesions are a red, flat area and the lesions are about  ¼ to ½ an inch in diameter.  Also, the top of my mouth gets super smooth.  You know those ridges on the top of your mouth?  Mine get almost completely smooth.  I showed it to more than one doctor and they said it is not a mouth virus.  Also, it is not just in my mouth.  The same problem is in my nose.
Back to top
 
 
IP Logged
 
Pages: 1 2 
Send Topic Print