Archived from Original Forum  -  sharon-nc author



The www.tmsforacure.org lists the following symptoms as symptoms of mastocytosis – I don’t have spleen involvement or osteoporosis yet. All the others, got it.

• Abdominal pain• Hives & other rashes
• Anaphylaxis
• Inflammation of the esophagus
• Blood pressure changes & shock• Intestinal cramping and bloating
• Bone pain (mild to severe/debilitating)• Itching, with and without rashes
• Chest pain• Liver, spleen and other organ involvement
• Cognitive difficulties/brain fog• Malabsorption
• Degenerative disc disease• Migraine headaches
• Diarrhea• Muscle pain
• Dizziness/vertigo/lightheadedness• Nausea
• Faintness• Osteoporosis/ Osteopenia
• Fatigue• Peripheral neuropathy and paresthesias
• Flushing• Rapid heart rate
• Gastroesophageal reflux• Vomiting
• Hematological abnormalities

Right now my body seems most focused on tremors and fainting, though I did have a shock just a few weeks ago. There are periods where some things won’t flair or will be in good control or maybe just able to ignore. Ignoring is never a good idea when it comes to masto, I can speak to this as I do sometimes think, if I ignore it, it will go away, so far that has not happened even once.

I am very lucky in that fatigue generally is not a big issue for me, probably that is the mildest one – with the exception of when everything just kicks in gear and the shocking starts and all the other symptoms jump in the party at the same time, then I have some fatigue.

Sharon in NC

Archived from Original Forum  -  deborahw author


Hi Laureen,

Welcome and this is definitely the right place for you to start on figuring out what is wrong. We have all been in the same boat, trust me! It is difficult for docs to diagnose masto. Often we get clinically diagnosed because we test negative to everything else. The only definitive test is teh bone marrow biopsy, and you don't want to have that doen just anywhere due to possible false results.

Do you mind sharing what state you live in? I ask, because the quickest way to get to the bottom of this mystery is to go see one of the mast cell specialists. (My personal favorite is Dr. Cem Akin at Univ of Michigan.) If you absolutely don't want to see one, then you need to go to an ALLERGIST. The mast cell diseases are not blood diseases. They are indeed related to histamine (that we know for sure, maybe other things that are still being researched). Thus an allergist is the way to begin in my opinion.

I guess that I don't have much confidence in any doc, though, unless he is one of the masto specialists. You can't believe how quickly I got better after my first visit to Dr. Akin after having been undiagnosed for 10 years with other doctors!!

I would say that your symptoms certainly sound like some form of mast cell disease. One tip for you: I was always really itchy, and Dr. Akin had me taking zyrtec, allegra, and zantac. The itchiness continued and we added Singulaire, and that got rid of the itchiness! If you are only taking zyrtec right now, you are extremely undermedicated for mast cell disease. The zantac really helps get rid of the GI problems, and the allegra and zyrtec really help with the othery symptoms. There are many more meds as well, as each patient responds differently and it is necessary to determine what best helps YOU.

Anyway, if I know what state you live in, I can tell you who the closest mast cell researcher/specialist is to you. In the meantime, please read over the forum and hopefully you will find some good info to help you.

Archived from Original Forum  -  laureen author


Oh...and in regards to the specialist...it looks like Michigan would be the closest for me? I would be willing to travel there, but would like to be a little confidence in knowing whether this is what I have first. Would they be able to do testing here first on things like blood, etc...before going there for the 1st time?

Archived from Original Forum  -  deborahw author



Hi again,
I just saw your 2nd question. Wherever you go, Michigan or Boston, you are in control of what tests they do. It might be faster to get an appointment with Dr. Akin; I can't say, but I know he is easy to get into. Generally, you email him with a lot of details as to why you believe that you have masto (don't be wishy washy or you won't get an appointment; tell him the facts). Then he will give you a phone number to call to make an appointment. You can either go for a consultation, in which he will try to diagnose you clinically and more than likely put you on some mediciations to see if you improve. He likes to get answers quickly, so he will suggest that you get a BMB when you come. You don't have to, though, as that only tells him if you have masto. If your bmb is negative but you have the symptoms, you can still have MCAD. He will still treat you without the BMB. That is what I did at first. I went up for only a consultation. He put me on meds, and I got way better. A year later, I decided to get the BMB to know for sure if I have masto. He didn't pressure me to get it, yet he still treated me and helped me get better.

So, yes, go see a masto specialist even if you aren't sure you have it. Otherwise, you can waste years of your life not feeling well, and you can't get those years back. I know...I wasted 10 years of my life. It wasn't my fault, because no one ever suggested mast cell disease to me and I had never heard of it. I just had the bad luck of never meeting anyone who told me about it until 10 years after I first became ill. My life wasn't a throw away during those 10 years, but it could have been a lot more enjoyable if I had felt well and not been afraid that I couldn't do things for fear of getting sick enough to go to the ER. Moral of the story: go to a masto researcher.

Archived from Original Forum   -   deborahw author



It makes me really happy to know that I might be able to point you in the right direction. Someone did that for me years ago, and it changed my life. Don't forget to keep a diary of how you feel, what you did that day, what you ate, etc, and that will help you figure out your triggers so that you can avoid them. Hopefully, your husband will learn with you and be that one person who truly understands what is going to trigger you and how you are feeling. Some of my relatives just don't get it, but my husband does!

Let us know if you get that doctor's appointment with Dr. Akin!

Archived from Original Forum  -  Laureen author



Hi again. I was wondering how long it usually takes to get an email response? I only emailed him friday, but not sure how long I should wait before trying again.

Thanks again

Archived from Original Forum  -  nanciswell author  



I do not suffer anaphylaxis..  

I suffer from  incapacitating  digestive  problems..I have  resigned to the fact that if I am having a  reaction I need to go to bed, relax as much as possible  and spend  at least an hour  of  intense  relaxation as my muscles  get  very tight and  extremely fatigued  which  stresses  me out   and sends me into panic  mode..,The relaxation/ simple  stretching  helps me  to gain  confidence  again in  being on my feet again....

It took me 33 years  to figure  out that I was  reacting  to practically everything in my environment.  It was  a bit of  denial as  well, as  I knew  I was  reactive to  my environment  but could not face  that I  am  THAT  reactive..  and had  to  be so restrictive..

I  have spent alot of time   in doing  body/ mind  work to be able  to  relax enough  so to  shorten my severe   reaction.

I  will  get the following  symptoms..

Feelings of euphoria, manic  followed by depression  hours later.. I find this symptom was the hardest to come to terms  with..  It  was hard  to  become aware enough of  when I  am manic , but  now  as  soon as  I  start to feel  a bit  better  after eating  I know  I need   to go into my relaxation mode. It was hard  not  to  be happy I was  feeling so well and energized  as opposed to my usual  fatigue.. It  was hard not  to  use this  excess energy and  become  a  :" normal" person. I am now more content to be  a sickly person  and  I  am finding   the going to bed thing is  the best way  to deal with it all.. as  at the end of the high comes  the  severe low  .. and that is horrible..

Then my   muscles  will start to tighten up.. Leading to  difficulty  walking,  difficulty  holding a  pen,  and  what is called myoclonus  episodes  where  my whole body  all of a sudden jerks.. Feels like  an electric  bolt  has hit me.. My body  jerks..  the  worst  was  when my shoulder  will pop  as the muscle  jerks..

Dizzy.. .
Flushing/ sweats... this is  not a  constant  reaction.. something  new this  week  and I theorise  based on my  health knowledge  is  adrenal  related>>??.. With   hyperventilation and small amount of  heart  palpitation.. verging on  a panic attack  kind of thing..
Constipation... When I first  went off  my  bad foods  I had no constipation and this after 33 years of  bad constipation..  When I was constipated  I would  feel  very feverish  and maybe nausea  worse.   I  unforunately started   taking  something  with the chemical called propylene  glycol  in it..   I was putting it on my skin  ,, After  on it for a month .. I  got  very illl with  it..  And  with  that  the constipation  came back to last  for another  10 months .. until I  did  some frequent dose chelating  and  it  has improved  a nice  smidget....
Breathing  chemicals  such as  perfumes,  tobacco  smoke  used to give me nasal  drip..
Feeling of hunger..  ie  hypoglycemic  reaction

I forgot to add  in the burping..  I  do  find if  I  purposefully burp  some symptoms  are not  so bad.. like the dizziness ..

Archived from Original Forum   - nanciswell author




I am awaiting the results of the tryptase  test.  The doctors who I see a few times a year   now for 20 years who  specialise  with patients like  me  hopefully have  done enough  tests on me.. I just  feel  I  cannot  go running around for an answer that is not there.. Not in the condition I am in now.  I   can see  resting for the next few months and then revisiting  the  " next  step plan of attack ."

nanci