Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  YaBB is sponsored by XIMinc!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Hi Everyone, I am rockin the world of mast cell :) (Read 7075 times)
mrsmegorium
Rookie
*
Offline


Sickness ain't for sissies
:)
Posts: 11
Myrtle Creek, Oregon
Hi Everyone, I am rockin the world of mast cell :)
03/08/14 at 16:28:07
 
I have been ill for about 13 years.  I was officially diagnosed on September 4, 2013 with IA, MCAD and then in December of 2013 we added hereditary angioedema with normal complement to the mix.  I am on a plethora of meds and allergic to many of the treatments.  Currently I am having my children tested and it looks like all 3 of them have some form of this and they are in the beginning stages of getting care.  I seem to have a pretty severe case and our next step is a bmb and chemo.  I am currently on ketotifen, gastrocrom, ranitidine, inhalers, Zyflo, etc. and we have tried to avoid prednisone but now I am on prednisone 10mg every other day until we can get a better plan of attack.  I have gotten so weak and so tired that I feel like my body is being crushed by gravity and standing is an effort, let alone doing anything.  I sleep on a cot and make my own laundry soap, I can't sit on our furniture since we had pets that we had to rehome, the residue in the furniture is apparently still enough, thus why I was passing out in the recliner all the time.  Over the years I have felt bad, but one of the hallmark times was last April 2013 when I temporarily lost vision in one eye.  Since then there was a steady and more rapid decline.  I have not gone a day without a level of fairly significant anaphylaxis since I don't know when and I have learned to hate that word.  Most doctors seem to get that and anaphylactic shock confused which is usually good for a lecture so I have learned to say "I appear to be allergic to something" instead.  I have small fiber polyneuropathy and they are trying to determine if that is from the mast cell or the other disease.  Next week I see the oncologist for the next phase of the treatment.  This has truly been hellish and doesn't seem to stop.  I hope that since we are finding that the children have it while they are in their teen years we can do much to improve and prevent for them.  They are pretty low symptom at this point in comparison to me.  I am struggling to find any quality of life whatsoever.  I had to give up driving as it somehow triggers reactions.  As near as we can tell without scientific proof the mast cells have really centered in my eyes and brain so computer screens and tv's are particularly difficult and sap my strength.  I have not used the epi pen on myself because I have tachycardia, but other than that, they would get a pretty good work out.  I have learned that iv solu medrol helps, but again, that is dumping large amounts of steroids in there.  Sometimes I feel quite at the end of my rope.  We tried to give me aspirin and I can say with great certainty that I am quite allergic to that.  I have significant sleep issues and have a sleep mask but it would seem, despite the sleep doctor saying that it is impossible, that I have most likely developed an allergy to the mask itself.  Since I wake up with almost no nostrils left and can't breath and am ripping the mask off in my sleep, I'd say that's a safe bet.  I am so frustrated, frazzled and exhausted that I struggle with trying to be emotionally balanced.  Because of weakness and allergies to things such as others perfumes or any strong odors it is very hard to go anywhere and I have been an almost complete shut in for the last 6 months.  At age 39 after 13 years of misery, it's feeling like a tough go.  I am hopeful that the oncologist can do chemo and that they do a good job with the bmb and get accurate results for analysis.  My immunologist trained under Dr. Castell and is in frequent contact with them from what I understand, so I think they are doing everything they can for me.  I also nebulize the gastrocrom now to try to reduce some of the internal inflammation which has been helpful.
Back to top
 
 
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #1 - 03/09/14 at 01:40:07
 
Well this makes me sad to hear what a horrible time you have had dealing with this for so many years! I also have IA, but was able to get it controlled. I know that your immunologist trained under Castells, but have you considered getting an appointment with her in person? It seems that it couldn't hurt. Travel would be difficult I imagine for you, but perhaps as her patient she might give it her all and find ways to improve your life.
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
mrsmegorium
Rookie
*
Offline


Sickness ain't for sissies
:)
Posts: 11
Myrtle Creek, Oregon
Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #2 - 03/09/14 at 08:52:03
 
I truly would love to see Dr. Castells, but I just don't see how it is possible.  One of the truly sad and difficult things about illness is not just that you are ill, but also how others deal with it.  Or don't deal with it... and many have grown to resent what this has cost and are "done".  Especially since after finally getting a diagnosis, I didn't get better.  So, financially, no way to get flown back there and make this happen.  These trips that I am doing now are difficult because it is a 4 hour drive one way to any of these docs.  These that I am getting as a team are probably some of the best in our state, so that is all I can do.  It is a big step up from the care I had been receiving.
Back to top
 
 
IP Logged
 
sarahkay1111
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 136

Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #3 - 03/10/14 at 05:35:28
 
Oh my-I am so sorry to hear what a horrible time you have gone through, especially in this last year.  I have only had this for 3 years, and that has been enough for me already.  I hope the chemo works for you.  Do any of your meds seem to help you, or Benadryl?  I have been reacting since November, with a small respite in January, and I'm feeling at my limit already.  I have very strong reactions to smells of all kinds, especially food and perfume, and have to wear a mask very often.  Have you had any breaks?  I will be thinking of you and pray that you start to feel better soon.  I totally understand the people being "done" with you thing.  This disease never seems to let go and let you just have a "normal" day.  You always have to think about everything.  Sometimes we don't want to think.  I feel like a neurotic, paranoid person now, because I have to think about every single thing I eat and do and why am I reacting now?  I have kept a journal, but my "safe" things change, and I'm running out of foods.  Just a thought about the sleep thing, are you allergic to dust?  Can you get a dust cover for your pillow so you don't have to use the mask?  Is someone able to clean your home well so you react to less things?  I know prednisone, along with the disease causes weakness.  Are you able to even go for a small walk?  Mild exercise can help your body metabolize the histamine so your not so overloaded all the time.  I'm sure you have probably tried everything, but just thought I'd ask... I really hope you get some relief Embarrassed  Sarah
Back to top
 
 
IP Logged
 
DeborahW, Founder
FOUNDER/ADMIN
********
Offline



Posts: 1224
USA
Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #4 - 03/10/14 at 07:04:07
 
Are you doing the chemo based on recommendation from Dr. Castells to your immunologist? Generally we mast cell people don't do chemo, but sometimes you get a doctor who recommends chemo. Sometimes it makes things worse. However, it may be that you have other things occurring besides the mast cell problem, and thus the chemo will fix them.

I mention this so that others with mast cell disease reading this will realize that chemo is not the norm for treating it, as I wouldn't want new people to jump to that conclusion. I really, really hope that it helps you, though!
Back to top
 

Feel well!
DeborahW, founder
WWW  
IP Logged
 
mrsmegorium
Rookie
*
Offline


Sickness ain't for sissies
:)
Posts: 11
Myrtle Creek, Oregon
Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #5 - 03/10/14 at 07:20:20
 
Yep, I surely have tried most everything.  I wish I could afford to have someone clean and I do believe that dust mites are one of the problems, thus why I have to sleep on the cot and make the homemade laundry soap.  Your suggestions are great Smiley  Unfortunately, my body is just difficult.

My doctor has been consulting with a team for my care, a neuro muscular doc, a sleep doc, now the oncologist and then it sounds like pretty regular with Dr. Castells pretty much right from the get go because I showed up on her doorstep in pretty rough shape  Tongue.  

The chemo is a last resort and I think we have to figure out if it will help, depending on what the mutations look like, etc.  I was diagnosed with rheumatoid arthritis and put on Plaquenil last March of 2013 and since that drug has a very long half-life I suspect now that 6 weeks of a medicine I was allergic to being in my system could have been what really amped up this disease and I went from miserable to barely alive.  That was an incorrect Dx btw...it was just this disease apparently.

I didn't think about the fact that I could be terrifying people new to this, but my understanding of this disease is that, yes, it stinks, but with proper treatment and understanding and avoiding your triggers you can have fairly decent quality of life.  I think mine went too many years without a diagnosis and then had a pretty big catalyst to propel it to the next stage because I had gotten to where I was passing out all the time and by July and August it was indescribable the misery I was in.  So, compared to last summer, I am doing better, but I cannot get reaction free.  Who knows, I may not be a candidate for the chemo, either.

So sorry if I scared people, totally hadn't thought about that.  As near as I can tell, I decided to get a rare disease and then just be different about it on top of it Tongue  Why not, right???

However, I have been lurking and reading but not as a member and as near as I can tell, I have all of everybody's symptoms and then some and I would just like to ask questions and try to figure out what others' day-to-day lives and reactions are like and also, what your quality of life looks like now that it's under control.  

Also, do any other people with mast cell also have angioedema?  I would love to hear if there are.  For that we tried Stanazolol to which, wait for it....I am allergic...even compounded.
Back to top
 
 
IP Logged
 
redbird
Guru
*****
Offline


I Love YaBB 2!
Posts: 862

Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #6 - 03/10/14 at 19:21:45
 
someone would have to show me lots and lots of case studies and patients that this worked for before I would ever even consider it...
I am sorry..as Ms. Deb said
I have been in masto group  since 1996 ...read lots of literature etc...heard researcher doctor speak and I have not heard this...
sorry..just my thoughts..
redbird
Back to top
 
 
IP Logged
 
mrsmegorium
Rookie
*
Offline


Sickness ain't for sissies
:)
Posts: 11
Myrtle Creek, Oregon
Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #7 - 03/13/14 at 16:08:33
 
I am confused, I thought some of you had done Gleevec and that it was chemo?  Could you share more of what your concerns were?  I saw the oncologist today who is checking me for some other types of cancer not related to mast cell and then they are hoping they can use marrow I have had from a previous biopsy to see more information about my C-Kit mutation.   4 years ago I was diagnosed by a now retired oncologist with essential thrombocythemia due to the inability to diagnose secondary thrombocythemia and some less than concrete bone marrow.  After getting a second opinion with one of the foremost experts in myeloproliferative disease, we never could confirm or eliminate the disease.  However, my platelets never really continued to increase.  I am thoroughly confused about what to do and so sick and have had so many experiences that were close calls that I feel completely desperate.  Nothing seems to be stabilizing the angioedema, nothing seems to be stabilizing the mast cell, my strength continues to decrease I have only been able to eat food for the last few weeks and even then it's not like I can eat a smorgasbord, I follow the low-histamine diet that I have slowly modified for me.  So, today when they weighed me and I had gained 17 pounds since the last time I was weighed which had me losing quite a bit of weight, overall I had lost over 30 due to lack of food and liquids (water, being thin, got pretty hard to swallow for quite a while, let alone putting anything solid in my body and I lived on small sips of coconut milk for weeks)  It seems like overall I am fighting a losing battle.  My random urine histamine has stayed consistently elevated, my complements have remained consistently normal but my symptoms plus my children having low complement make them tend to think I have normal complement angioedema, my peak flow tests are at 73%.  I have removed the carpet from my house, removed all the pets, done anything I could to control environment.  I also have Raynaud's Syndrome.  During one of the severe reactions to attempting start aspirin I actually had a whopper of a black eye that disappeared as I was able to get air and seizures.  I just truly don't know what to do.  I don't think anybody does.  I think the docs feel bad for me, but have no answers.  They are all done saying "anxiety" or "diet and weight loss".  This doc has been referring me repeatedly to other docs to eliminate other possibilities, I have been to rheumatology, neuroopthamology, neurmuscular, sleep docs, and now hematology/oncology.  They have screened me for every disease known to man and with the neuromuscular looking negative they keep coming back to it being the mast cell.   If not, the cancers they are looking at are all incurable, some containable, some not.  I struggle with wishing that someone, somewhere had listened along this 13 year fight for me to keep trying to get help and I realize now that I have been describing allergic reactions over and over.  

In October my tongue was just a giant white stick in my mouth and I was experiencing all that misery of it hitting my heart and making it clench, putting a vise on my lungs, my nerves up and down my spine, etc. and as I was laying in the ER room I couldn't move first my feet, then my hands and feet, then up to my knees and elbows, etc. until I could barely move my lips and keep my eyes open.  I have had so many horrible experiences and I just need them to stop.  I don't know if anyone else has their gums swell up as well but I literally don't think one part of my body is spared in having a reaction.  Prednisone is like a miracle drug.  Each drug we added helped so much.  Ketotifen and Gastrocrom allowed it to where I could start adding food.    They do know I am suffering extreme sleep deprivation and parasomnia but don't know why.   It's actually still more complex than that with lots more tests that have been done and diseases eliminated, etc.

Back to top
 
 
IP Logged
 
sarahkay1111
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 136

Re: Hi Everyone, I am rockin the world of mast cell :)
Reply #8 - 03/14/14 at 09:59:40
 
Sheesh, I thought my reactions were bad.  I have severe tachycardia issues, throat swelling, tremors, Raynaud's, chills, shortness of breath with the tachycardia, dizziness, ringing in my ears, high blood pressure with reactions, and feeling spacy.  I have been having almost constant reactions since November, with the exception of January.  The severe cold weather in MN has been awful for triggering me, and I can't avoid going outside because I have to bring my kids to school where we live.  Now, I can't seem to stop this flare, even after a prednisone burst and taper.  Something always sets it off again.  This is a terrible, frustrating disease, and I really feel for you.  I know people take Gleevec do really well--I think you're supposed to take it if you don't have the C-Kit mutation, but I'm not positive about that.  I understand your fear of having to live like this, and we are all here to support you Smiley  Good luck with everything and I hope you get some relief asap!  Sarah
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print