Hello Everyone, I am currently seeing a Consultant at a U.K. hospital with a view to getting a diagnosis for my symptoms.   Having looked thru' the various postings on this forum I think there is a possibility I have problems with histamine release and/or a mast cell disorder and I wondered if my symptoms fit with what you all know and experience?  I apologise in advance for the long post.

Up until Autumn of last year I was healthy, fit and very active until I had a CT scan with contrast dye for another problem (benign tumours), I believe that this scan was the start of my ill health.  I had what I think is termed a delayed reaction to the contrast dye - chest pains, breathing problems and itchy skin - and these continued intermittently.  However at the time I did not link the contrast dye to my symptoms so I had further MRI scans with contrast dye and again these symptoms flared, at times I felt as if I was struggling to breathe and my skin was incredibly itchy.  Subsequently, a chest xray was 'unremarkable'.  Blood tests are all Normal, however I am Vitamin D deficient and now taking supplements.

When I had the last MRI scan again those symptoms worsened and all sorts of symptoms that I had not previously had started such as skin rashes, muscle/bone aches/pain, flu-like feeling, sleep problems, headaches, palpitations/fluttering, ear ache, tinnitus, sore throat, joint pains, exercise intolerance, nausea, stomach ache, tingling fingers and toes, fingers turning blue, puffy eyes and hands, red, burning face, extreme thirst, frequent urination, irritated eyes, stuffy nose, cognitive problems, fatigue, nausea when watching TV or turning head or travelling in a car, light headedness and feeling slightly off balance, weakness, increased sensitivity to noise in particular and sometimes light, difficulty regulating my body temperature, intolerance of heat/cold temperature and hot/cold water, muscle twitching, difficulty focussing vision, widely varying blood pressure and sensory/information overload.

The bottom line is the above is continuing to make me feel so very ill on a daily basis and I seem to not be getting close to a diagnosis - I have had these symptoms for seven months and constantly feel exhausted and lacking energy every day.  I am virtually housebound now because I have become so intolerant of any exercise or physical exertion to the point my body 'crashes' easily.  'Crashes' can result from having a shower or bath (heat?) and/or walking for thirty minutes on uneven terrain and can result in me feeling weak, exhausted, flu-like with stuffy nose, puffy eyes, itchy skin and breathing issues etc.  When I 'crash' severely (usually thru' over-exertion or when my period starts) I have to go to bed and my blood pressure initially goes extremely high then plummets making me feel as if I am about to faint and collapse.  However, I have never fainted to date but it does make me feel as if I my body is about to shut down.  Its a dreadful feeling!  'Crashes' have lasted up to three days with my symptoms gradually subsiding as I get back to my baseline symptoms.

I am currently signed off work sick because I 'crash' so easily.  My life has turned completely upside down because I am no longer able to work or go into town shopping or do the things I used to enjoy such as walking my dogs.  I cannot go out for very long or socialise or function normally.  I experience problems when I go to the supermarket or town such as light headedness, nausea, and a 'spaced out' feeling which is totally bizarre however I don't know what is triggering these symptoms and have put it down to sensory/information overload eg a too busy environment for my brain to cope with.  Instead I am constantly trying to maintain a quiet, calm environment at home now so I don't trigger these symptoms.  My partner turned a tap (fawcett) on in the kitchen once when I was 'crashing' and I nearly jumped thru' the ceiling due to the extreme noise, it was absolutely unbearable.

Recently I seem to have become "allergic" to some foods although am having a hard time trying to figure out what these are.  I have never been "allergic" before.  When a reaction occurs my face burns and slightly reddens with all over itchy skin and puffy eyes and puffy hands.  Sometimes I also feel nauseous and my stomach feels delicate too.

I have been tested for Lupus and other connective tissue diseases and my ANA was negative, also tested for Carcinoid and the urine 5HIAA test was negative.  Chronic Fatigue Syndrome has been discounted because of the various skin lesions and rashes I get.  I have lots of dark brown freckles on my skin (always have had) that seem to be increasing, however these do not look like urticaria pigmentosa and are not itchy.  However, in the early stages of this illness I got the occasional spot on my skin that was very itchy when scratched.  I have petechiae (red blood blisters) all over my body and some of these have remained since my illness started.  New ones are appearing all of the time.

My triggers are Exercise or minimal Exertion eg walking, cleaning, shopping etc, my period starting, cold, heat, negative emotions such as stress/upset and possibly some foods and alcohol.

What I would like to know please is:

1.  Are my symptoms likely to be due to histamine release/ a mast cell disorder?
2. Does anyone know why talking to people for an extended period makes me feel exhausted and flu-like?
3.  What is happening when I go outside, why do I feel instantaneously light-headed, 'spaced out' and nauseous and unable to cope? Why does it feel worse in town/a busy environment?
4. Is menstruation affected by histamine and does its release trigger a 'crash'/collapse?
5.  I want to go back to work.  Can exercise intolerance be improved/cured with medicines?

My intention is to talk about all of this with the consultant, I don't know whether he is familiar with mast cell disorders but I hope so - time will tell!  Its quite difficult getting information on mast cell disorders here in the U.K.

Thanks for taking the time to read this and good wishes to you all!

TallBird

TallBird,
Sorry to hear that you have similar issues as me.  I also suspect mast cell issues in myself but haven't yet had any specific testing done.  Did you ever get any of your questions answered?

Hi Tallbird,  welcome to our forum!!   I´m sure we can help you here!!

Without a doubt what you say most certainly sounds like masto - the symptoms, the behavior, and just the plain horribleness of it all.   You´re in the UK, aren´t you?   Your best authority in masto there is Dr. Clive Grattan.   I have his contact information if you want as well as a list of other UK doctors.  How knowledgeable in MCAS I don´t know.  Chances are that is what you have but you need a full workup for SM and especially a very CLOSE look at those spots of yours.  It´s possible that it´s not UP but there are other forms of cutaneous mastocytosis and you need to have various biopsies and have them especially tested by someone who KNOWS mastocytosis for it´s a very difficult diagnosis to make and if the pathologist doesn´t know the proper procedures and markers, he´s going to miss it.    This is why it would be worthswhile going to see Dr. Grattan.   As you know you can see him through the NHS but it will take a while - better to make a private appointment instead.   Let me know and I´ll send you his information.

Second, there is NEVER any need to appologize for a "long post"!!  This is complicated stuff we talk about and often a short one won´t do.   No apoligizing necessary!!!

Now, lets look at those questions of yours:


What I would like to know please is:

1.  Are my symptoms likely to be due to histamine release/ a mast cell disorder?

Yes! but there are probably other mediators involved, especially those which make your BP rise and drop.

2. Does anyone know why talking to people for an extended period makes me feel exhausted and flu-like?

STRESS!!   Not only is the brain releasing MC mediators by just having to concentrate and process it all, but your breathing is affect as well.  And depending upon what the conversation subject is, this too is stressfull and all of this will cause the MCs to degranulate.   And this is why going into the grocery store is such a trial!  That´s one of my favorite places to begin triggering!  Making up all of those decisions, the constant input - sight, sounds, smells, thinking and deciding, people constantly in the way, peaches versus pears!!!  UGH!!!   I´ve found myself going into anaphylaxis picking the veggies more often than I like to admit and by the time I´m at the veggies I´ve already been in the store a half an hour!  And standing still for too long at a time isn´t good and since in the process of selecting veggies I´m not walking around too much, I find myself getting overwhelmed by all of it!  My husband doesn´t like to me to grocery shopping alone anymore cause of how stressful I find it to be!!    When you think about it, there´s a definite benefit in that!

3.  What is happening when I go outside, why do I feel instantaneously light-headed, 'spaced out' and nauseous and unable to cope? Why does it feel worse in town/a busy environment?

Well, I pretty much answered this above.  Again, it´s the stress of all the input.  That nausea, spaciness, flu-like symptoms are all symptoms of anaphylaxis!!!   Extremes of heat and cold and strong emotions and anxiety are known MC triggers.  The MC sees these things as stress and stress is a threat to the body, so it triggers the fight/flight response, or the stress system.   MCs have many receptors on them for these mediators and so the MC opens up and spills it´s contents - histamine, prostaglandins, heparin, cytokines, etc, etc and much more!  These mediators are toxic in large quantities and that toxicity is what causes the many reactions and symptoms you are going through.   We have only about 4 medications to combat this - Antihistamines, Singulair, Mast Cell stabilizers (Ketotifen or Sodium Chromulyn and Aspirin.  These medications either block or inhibit the effects of some of the mediators being released.

4. Is menstruation affected by histamine and does its release trigger a 'crash'/collapse?  

The uterus is chock full of mast cells.  This is because the MC is responsible for blood vessel growth and health.   Also, in the process of menstration, the MCs, which are present in the uterus and especially in the endometrium, these cells receive instructions from the hypothalmus in order to release heparin and that is what makes your period come.  They process of menstration directly involves the mast cell in order to make the blood descend.  This is why so many of us have very serious reacting at this time period.  It´s the natural process the body is going through but because our mast cells throughout our bodies are mal functioning, those which do malfunction are going are real party goers and even though the party doesn´t include them, they literally "crash" the party anyway!!!   Not all of your MCs are dysfunctional, but those which are are extremely dysfunctional and they can´t resist having "fun"!!  Sadly to say, their fun is NO FUN!!!

5.  I want to go back to work.  Can exercise intolerance be improved/cured with medicines?

YES!!!!!!!!!!   You may not be able to go back to the active self you once were, but there are indeed some who do manage it.  Yet, for the majority of us, we must have the right conditions in order to do - airconditioning, nothing around which triggers us, and be very stable in our disease.   I´ve not reached this place yet, however, I went from barely being able to walk down the street to now being able to go walking about the city doing my shopping without too much trouble.   I can´t do it during the summer because Heat is a MAJOR trigger for me, but the excercise will not longer trigger me.    There was a time when I would have to walk a block to go to an office and in the process of walking my stomach would begin turning and by the time I made my destination I was ready to keel over with dyspnea, nause, abdominal pain and tremendous malaise and weakness!!And let´s not mention being very flushed!!   This is a thing of the PAST now and only when I´m having something which seriously triggered me does this come back to bother me for a few days until my system calms back down again.   Being on the appropriate medication routine is EXTREMELY IMPORTANT!!


As to this "crash" which you mention.  Tallbird, this is what we call Anaphylaxis!  

Are you taking any medications, if so, what are they and what are your doses?  Perhaps we can help you adjust them to give you some improvement.    

My oncologist, when he was investigating me for the carcinoid syndrome saved my life by giving me Allegra 180mg to be used in an emergency.  Well, this is what stopped my crisis events!   We didn´t know I was going into anaphylaxis because I get hypertensive too only it stays up and doesn´t come crashing down.  It will crash with other times, but not in a crisis event.  So, when I would go into anaphylaxis I would have intense dyspnea, abdominal pain, flushing, weakness, nausea and hypertension.   And it would go on for 2 and 3 hours long until it worked itself out.  When my oncologist gave me Allegra, it stopped those crises within 10 -15 minutes!!  IT WAS WONDERFUL!!      It was about 3 months after he gave it to me that I began taking it daily without my doctor´s permission.  By that time my oncologist had given  up my case and nobody yet knew what I had but what we did know is that I was responding positively to the antihistamines and we felt that by taking it daily it would give me a big improvement.   It DID!!!      But since my masto had only in that year made itself known and was still growing in strength, it soon became evident that one litle pill a day was not going to do it!!!   I now take loads more than this but it has given me STABILITY to a certain respect and I am MUCH MUCH BETTER!!!

BTW - a positive response to antihistamine treatment is one of the diagnostic criteria for MCAS.


Well, I hope this helps you and if you need more answers and information on MCAS please let me know and send me a PM telling me what you need and I´ll be glad to send it to you!

Lisa

Tallbird, you asked a question about rescue meds.   For the vast majority, from what I´ve seen others saying they use, it´s liquid benedryl.   This is not what I use.   I live in Brazil and I´ve not been able to find it.  I use allegra 180mg.   This has pulled me out of the majority of my reactions, but lately, even it has become ineffective in light of my big reactions.    

I have certain challenges I face because of where I life and because of how I react.   I have severe cardiovascular reactions and although I should have an epi-pen by my side and should use it, I don´t and can´t.  The government has prohibited their manufacture and for me to buy one, it´s imported and costs about $500 US dollars!!  Absurd!   So, what do I do?    Well, for those reactions which don´t respond to allegra within 15 minutes I then hit in with a 2nd dose of allegra and if that doesn´t work then I step in with prednisone.   I used to have to do this no matter what because in going to the ER I would not get attention otherwise. I was better off at home where I could try to intervene with my own meds whereas if I went to the hospital they might put me on an IV but with the hypertension they would never give me epinephrine.   It was only after I found a doctor who took my case under her wings and wrote up some protocols for the hospital that now I can go to them and find adequate treatment!!  Yet if I get sick away from home then I´m still in trouble for in trying to get even a siimple document from my doctors is proving to be more difficult than adopting a child (joke!)   But since I don´t travel much, I´m okay and will get this resolved sooner or later.    So now when I go to the ER for BIG reactions - perfume seems to be the killer - they know what to do -   IV, Epi, antihistamines, and a close eye on me.   So, this is GOOD, VERY GOOD!!


Now as to your BP changes, this is considered par for the course!   Most of those who go hypertensive have it come crashing in a matter of moments.  I´m the rare bird where mine will remain elevated until I get epinephrine.   Mine doesn´t crash when I´ve got an acute reaction going on.  Yet, I do go into shock and with pressure which will bottom out at about 50/40 sometimes, but this is when I´ve had a slower degranulation and it begins to take me down and will then lower my heart rate together with the drop in BP.  This is called relative bradycardia.   This took us a long time to figure out too!!

You see, Tallbird, my case is the WEIRDO case of masto.  There are so many odd things that I do which break even the rules of masto that each and every one of my doctors has been challenged by my case including Dr. Castells and Dr. Escribano.  These two authorities have been lending me their support long distance since my case is so very challenging and we don´t have any authorities here in Brazil!  My doctors gave me the freedom to seek out help if I could find it and thankfully these two authorities have been gracious enough to lend their help to me.  But, it´s not been easy and much of the work has been on my hands since those authorities could not really give me much help since I´m not their patient.  This is why I studied so hard to find understanding and help.  It´s paid off!!

As to investigating the carcinoid syndrome, yes, I also went through that and since it is the most threatening of all the suspicions it must be ruled out prior to moving on with masto.   So, it´s good, your doctors are doing the right thing.

So good to hear youve seen Dr. Grattan!!   He´s the best you have in the UK.  You won´t find a higher authority than him.  Yet, he could find himself being challenged by your case and if it comes to that then I strongly suggest you consider going down to Toledo Spain to see Dr. Escribano.  He knows MCAS and the other forms of masto which are not SM.  I don´t know how well Dr. Grattan knows MCAS.   He does know SM, but MCAS is even harder to diagnose than SM and there are many of the authorities who do not like the MCAS diagnosis and they prefer not even working with those patients.  Their loss I say because we open up the world of MC disorders and it´s research and the better they understand us the more they will see how the MC defect is involved in other diseases.   Oh well!

So, this would be the next step you should consider.   Dr. Escribano´s center, being a part of the EC abides by the EC health related insurance I believe or gives a discount or something of the sort.  I don´t know a whole lot about it since I´m not European, but his secretary can inform you if you are intrested.   And since his laboratory is one of the most up to date labs, they can manage to find your diagnosis without much trouble.  So he´s definitely worth a consideration if your doctors can´t nail your diagnosis.  


Hope this helps!!!


Lisa

Hi Lisa and Anne

Thanks again for replying.  

Anne - Due to not having a diagnosis yet I suppose the consultant is testing me with an H1 blocker to see if it is having a positive effect, which it is in some respects.  Hopefully, in time I will also get an H2 blocker and a stabiliser as you suggest as I have quite a few stomach issues: nausea, cramping, bloating, burning sensation etc.  The allegra is not holding me currently.

Lisa - You sound as if you have got your condition well and truly sussed out - it must be pretty frustrating for you not being able to buy an epipen due to the cost being prohibitive.  Also, it sounds as both Dr Castells and Dr Escribano have been a  massive support to you.  I am surprised that hypertension is treated with epinephrine, I would have thought that that is the last drug to give someone with high blood pressure, but then I don't know anything much about this illness or anaphylaxis anyway.  

I really admire and applaud the courage of everyone with this horrible condition because it is a nightmare to live with and so unpredictable too.  Having read some of the postings on this forum it is plainly evident that there is alot of suffering and for many, still not the wealth of knowledge in the medical community as yet unfortunately.  It's a good job we have each other....