I'm really interested in this as I was diagnosed with Fibro last year and I'm wondering if I was misdiagnosed as well.
Melissa

Hi Missy Bean and larken ,

I too have a fibro diagnosis . I also have my doubts about my diagnosis as i was diagnosed earlier in my illness and all my symptoms have other explinations . Even my fibro friends have questioned my diagnosis .

But I read Dr Blancos work with interest and look forward to seeing further work bringing it forward .

I have considered that this is all fibro .

Substance P , the neurotransmiter involved in fibromyalgia is having lots of work done on it . It has been found that patients with fibro ahve a extra nerve pathway which means signals can be misdirected .
I am having a bit of a hard day so will come back to you soon Ive got loads to say xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Josie

Hi malissa ,

The symptoms of fibromyalgia are in many ways similar to MCAS / MCAD . It is a diagnosis of exclusion . So all other rhumatology , neurological and immuno causes need to be excluded for it to be a true diagnosis .

In my case I think I have a little fibro and angiodeama . My cause for angiodeama is not established yet . All autoimmune causes have been excluded . I may have a new type of heridatory angiodeama . have you been tested for this ???

So my cause for my swelling may be histamine or type 3 HAE . Ill know more from my immuno next week .

I feel I have some fibro as I have had neck pains for many years which were treated happily with a massage and a night out So pure stress for me .

I was dignosed with fibro after 6 months of illness 2 days after my first shock . i was happily full of steriods and adrenaline so could move better than I had been with less pain that day .

2 weeks later my abdominal pain was very bad , my GP listened and reffered me on , so 2 weeks on he wasn't convinced . He was already suspecting "one of those funny syndromes where you react to alcohol " with my first shock .?? mastocytosis / mcas . But unf I had to move suddenly due to domestic violence and I had to leave his acre . A real set back for me in real terms .

I had a ( hospital )doc say all my symptoms were anxiety . I was a little upset that day because they had ordered a psych review without my consent . because they couldn't find out why i was shaking and being sick . well they did - gastritis .

I had been upset the week before on the first ward as i was left 2 hrs for anti sickness . The sister , when i told her my reasons , apologised but I didn't get an apology - anyway all in the past but so unfair and un necessary .

Now I have other explinations for most of my symptoms .
frequent urination - high BP , diabetes and prostoglandins .
pain = swelling ,
poor temp control - hot - histamine
retching - gastritis and bowel spasms
shaking - muscle spasms and dehydration - due to untreated retching

So I pace myself as I am told to do and have cool baths to help my back pain  . No fibro drugs helped .

My fibro friends have questioned the diagnosis as well as i didnt fit with them  even in how my pain behaves

So I remain open minded . On reading DR Blancos work I wandered if many fibro patients are undiagnosed mastocyctosis /  so that is why they have extra mast cells . But that's me tipping it on its head . With early work like Dr Blanco's it shows things , but it really creates more questions to research

Where are you in the getting a diagnosis process ???

If you do have masto or mcas it is not beyond that your family also have it . many of us have strong family histories , the research just needs to catch up with us .

I had a very stressful 6 months before my illness came out , culminating in taking a job in a well known fast food outlet for money as my sister was gambling . I do beleive this contributed to my illness coming out .
I presented with sweats , fatigue and temperture .
I had antibiotics and had pain in my liver and more sweats and shortness of breath on minimal exertion . I had a mild very mild chest infection . but i was very short of breath , now with knowledge , i suspect it was pollen ( summer ) and lots of kittens ( 11 inc big cats sleeping in my room ), personal care products ( short of breath in shower ) and bathroom cleaner which contributed to this first illness .

In the months before I had had I migraine which took me to ED (jan ) abdo bloating and retching ( may ) . All mysterious malladies .

I tolerated stress well before this . i was nursing for 15 yrs full time . I manged my stress as I said with hair dos , nights out and massages

My first epi pen experience was in Dec 08 , I had rose wine . flushed , red , had fast heart beat , dizzy and self presented at ED . i should ahve called an ambulance . But i got a lift . They saw me , got me into the resusitation room and treated me . I was very ill . BUT the treatment worked

I have had many experiences since then , shock , pain , operations , my bowel being so ill i was reacting to everything

So please ask away .

Mono can make your immune system go bonkers without any true allergies where you have high IGE for that thing - mine are cats , house dust and grass pollen . Any physical ( operation , infection etc ) can un mask mast cell disease and angiodeama from other sources as all swelling is not necesserily mast cell based

hugs
Josie

Hi mellisa ,

Oh babe , I compleltly understand xxxxxxxxxxxxxxxxx My pain is mostly conrolled by oxycodone . I was in teeth gritting pain every day.

My pain is also helped by less triggers . Masto wise - you need a more through work up . typtases , 24 hour urine collection for prostoglandins D2 , and a bone marrow biopsy ,
systemic mastocytosis can only be diagnosed by skin and or bone marrow biopsy to look at your mast cells there .
It can also affect all the things you describe . Did you ahve an oesophageal camera or a colconoscopy if so your samples from that could be re examined with a mast cell problem of the bowel in mind . It is known as mastocyctic entrocollitis .

Other conditions can have similar symptoms that need excluding . these are carciniod ( 5iiHA - 24 hour urine collection ideally by an oncologist as its a very slow growing and treatable cancer ) , pheaocrocythoma - catechlamines - epinepherine and nor epinepherire - 24 hr urine collection and heridatory angiodeama - compliment levels 1 , 3 ,4 .

A full autoimmune work up is also needed to make sure your problems arent being made worse by these .

mastocyctosis needs positive skin or bone marrow biopsy . But mast cell activation syndrome doesn't . as it about badly behaved normal mast cells . your true allergies may be triggering your other mast cells to join the party .

Singulair may help your chest symptoms . it has helped mine

gastrocrom is a good drug , that can take about 6 weeks to compleltly work . so be aptient chick xxxxx

I would ask Deb ( our leader xxxxxxxxxxxxxx ) about good immunologists that may be available for you to travel to .

Your dermo is doing well but I suspect you are on the edge of her knowledge . taking time , as long as she treats you is a good thing as it means you will get the right diagnosis . She can order the tests i said about . A tryptase would be helpful as well as it can direct re mastocyctosis .

I have a diagnosis of angiodeama , the nitty gritty is being sorted .

I ahve been tested for pheao , carciniod , HAE , tyhroid , adrenal and renal autoimmune disease as a cause . Lupus again . all negative .

So I may ahve HAE type 3 , new , and difficult to pin down .
I am seeing my immuno tomorrow . So ill let you know how it goes .

My tounge swells and my throat closes with a mix of swelling else were and blood pressure and pulse changes . I get wheezy . I flush regularly . I also ahve pale , sweaty , dizzy days , which I can help with anti histamines .

What meds are you on ?

I am in the same position as you foods wise . I am not going near , alcohol , vinigar , malt , caramel colour , malt o dextrin , sulphies in any form , gelatine , corn in any form ,
CT contrast , many meds ,
IGE allergies - cats , grass and house dust .


Fibro drugs wise you need to avoid any tricyclic antidepressants - amitrypylline , nor tryptyline . I didnt do well ( hives , flushing and swelling ) on cymbalta . Our serotonin levels can be high or low but don't respond well to being messed with .
Let me know how you go xxxxxxxxxxxxxxxxxxxx

Josie

Josie- I do agree I need more of a masto work up. I did have a tryptase test, it came back 3.4. So that's good, I know I have a lot to learn but usually if it is systemic masto my tryptase level would probably be higher correct? I do believe my dermatologist's knowledge is probably limited. I have some info that was passed on to me about mast cell activation syndrome. I will be taking it with me and hopefully the doctor won't be offended if I give it to her. So really depending on what she says as far as diagnoses will depend on where I go next. If she does confirm TMEP then I know I need to find either a real good internal medicine doctor and an allergist/immunologist. I do have an immunologist I have seen a few times in Seattle, and he is supposed to be one of the best, but he didn't even know what TMEP was. I don't want to be to critical because it is a rare thing. But I did get a name of a doctor from some people in The Mast Cell support group for the Pacific Northwest.
I have had the carcinoid 24 hour urine test, I remember seeing work up's for CH50,CH100, C3, C4, ESR, CRP, CPK and Aldolase, Anti-Neutrophil Cytoplasmic AB full panel, Qual. Cryoglobulins, RA factor, ANA, Lupus panel, adrenal testing. The only thing that has come back positive is thyroid, I'm hypothyroid and the anticardiolipin(from lupus panel) has come back positive 3 times, but no lupus. RA factor was borderline, but they said it's not important. Autoimmune disease run in my family, my mom has three. So sometimes it scares me a little.
I had a colonoscopy and a endoscopy. They took samples during both but during the endoscopy he only took them for celiac, which was stupid because I had been gluten free for 7 months. He said I had some erosion at the GE Junction and esophageal inflammation, and gastritis Colonoscopy came back as IBS.
I'm so glad I didn't try the amitriptyline, I had a bad feeling in my gut. I had a friend on cymbalta and she went through withdrawls coming off that med, so I said no way. Right now I'm taking Zyrtec, generic zantac, cromolyn, and hydroxyzine and I have a prescription for singular ready to go.
Where do live Josie?
Melissa

Thyroid antibodies huh? You know whats weird is my mom, grandma and I all had  thyroid goiters around the same age........our late 20's. We all have had a half of our thyroid removed.  
I really would like to know what caused that, no one has ever really explained to me, I was just told I need to take thyroid replacement.
One thing that is frustrated is no one will give me answers on why my hair is thinning, that started in 2004. Every year I feel like it's getting worse and worse.  No doctor can give me an answer. Both my parents and grandparents have thick hair, the men bald in their 50's. But mom and grandma.....full head of hair. I know in thyroid issues can cause thinning of hair but my numbers are good. ?????
I'm sorry your appointment didn't really give more answers. That can be so frustrating.
Today is my appointment and I hope I can get some answers. I will let you know how it goes.
Melissa

Hi Melissa,

I'm so glad to hear that another doctor is possibly researching fibro and mast cells.  I would love to hear what he has to say.  Please post if you are able to talk with him!  

I am talking with my doctor here in the Netherlands later this week and I hope he will speak with Dr. Blanco.  I'll let you know what he says about the spindle-shaped cells.  

Larken