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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Symptoms of an attack?/flare up? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1294371494 Message started by Lisa on 01/06/11 at 15:38:14

Title: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:38:14

Archived from Original Forum - jnjtbmoore author

I know that the flushing is a very common sign of a flare up occurring. What are some other symptoms that a flare up or attack is occurring?? I am not trying to sound funny at all...So many different things seem to be happening to my body, I have no idea to tell what is related to Masto or just me....

Thanks, Nichole

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:40:51

Archived from Original Forum - starflower author

0 permalink Post Admin: delete | spam Hi Nichole,
This is actually a very good question! Here are some early warning signs of an attack for me...

- A feeling of dizziness or floating when I move my head
- Having a dream that I'm nauseated and/or dizzy (middle-of-the-night attack)
- An unsettled, "raw" feeling in my stomach or lower abdomen
- A sudden sensation that my hands are really dry (this is a BIG red flag for me)
- Feeling overheated, regardless of the actual temperatureFeeling suddenly tearful and overwhelmed for no good reason
- The great thing about flushing is that other people can warn you!
- All of my early warning signs are internal... I only get hives when I'm out in the sun too long or having a really severe attack.

The sooner you treat an attack the better. That doesn't necessarily mean that you have to whip out your EpiPen. 50mg of liquid Benadryl (the stuff they sell in the children's section) will often settle me down. Other people have other tricks, like taking an extra dose of their regular antihistamines.

Heather

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:42:13

Archived from Original Forum - jnjtbmoore author

Thanks Heather!!

I really wasn't sure how to ask that question. BUT, that dizziness or floating when you turn your head just hit ME on the head...Oh my gosh!! I get that so frequently. I just didn't know how to explain it to anyone....Along with that, I do experience some loose bowels, sometimes diarrhea, I do overheat easily...this temp in the south is not helping, I do have that nausea feeling on my tummy. I have that right now actually....Sometimes, this sounds crazy I'm sure, but I just start rubbing my hands all over my chest, neck, and head...like I'm scratching but I'm not itchy?? Not sure if its just a nervous thing or not.

I did purchase some benadryl..I should keep it in my purse with me.

Thanks again Heather

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:43:28

Archived from Original Forum - riverwn2 author

Nicole do you take other antihistamines and mast cell blockers regularly? When I first became aware of the masto I took benadryl every day, then I figured out what I needed for me every day and my list changed.. certain meds to maintain me, certain ones to take if I didnt feel well and then the "rescue" meds if I had a full blown episode. Its kinda a hit and miss process to see what you react the best to medication-wise.

You need to figure out what those meds are for you. You need to carry some with you everywhere. You also need the epi-pen and a printed emergency plan in your purse to hand to someone if you have an episode ot end up in the hospital for any reason. Remember any stress or trauma will activate those mast cells so expect trouble with them for other problems and you can relieve it quickly. Good luck hon :)

Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:44:59

Archived from Original Forum - jnjtbmoore author

Ramona,

I am on 3 histamine blockers daily and a multi-vitamin. I am not on any mast cell blockers. Is this something I need to ask my doc about? I do carry an epi-pen and I have an emergency card from the TMS website in my purse. I also handed one to like my boss, kickboxing instructor, and anyone else I deal with daily. I figure, this stuff is systemic and my tryptase levels are a little elevated, I may as well take as many precautions as I can. Do you wear an alert bracelet?

I guess an emergency protocol of meds is what I need to talk about next with the doc. Along with the mast cell blockers.

I just got done with a set of tests and I have one more to go next week. Can hardly wait!!

Hugs, Nichole

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:46:16

Archived from Original Forum - riverwn2 author

Hi Nichole :)

Taking mast cell blockers would be a good idea... Most of us do.. thats something personalized to each of us, like which antihistamines and how much. Im a "shocker" so taking a mast cell blocker is important to me. It might not be that vital for you if you dont have symptoms to need it.

Here is a few;
Ketotifen--usually in starting dose of 1mg and goes up. Its not available in the US right now so you have to order it out of Canada. I take Zaditor eye drops which have a very small amount of Ketotifen in them and can be bought cheaply over-the-counter at Walmart.

Cromulyn syrup which most people take by mouth. It takes a prescription and is expensive. Im a cash patient so I take Nasalcrom which has it in the base also and is OTC cheap at walmart.

Quercetin-a natural bioflavanoid usually from grapefruit. I take this twice a day.

Luteolin-another natural bioflavanoid from olive oil, kinda expensive but Ive heard great things about it.
There are new ones in the market all the time. There is a new one for blocking Basophiles (I forgot the name but it is in the thread about reseach and Basophiles).

Again, you might not need any of these if you dont have symptoms you need to block. Im just taking my baby steps here learning so I hope this helps and someone else can jump in and give better info :)

Hugs to ya!
Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:47:25

Archived from Original Forum - shatzi author

I would like to introduce myself. I am not an experienced blogger. I have been dealing with MCAD for a while. It has been coming on for a few years. I was mistakenly diagnosed with multiple sclerosis and even lupus. I finally saw an immunologist in boston (brigham &womens) in 1/2010 and was started on zyrtec and ranitidine. symptoms broke through and doxepin was added. Then gastrocrom was added about 2 weeks ago.
Symptoms have been all over the place with abdominal pain, nausea, vomiting, diarrhea, dizziness, flushing, joint and muscle pains, polyneuropathy, brain fog, orthostatic hypotension, tachycardia, dermatographism. It was amazing to see the positive response to the drugs. The immunologist feels that the response to the drugs is supportive of MCAD diagnosis even though serum tryptase was normal.
He is concerned that I still feel ill on most days but from what I have read, this is not unusual. I do not seem to have any days without some of the above symptoms. Would others agree this sounds similar to their experiences? Especially on multiple medications? I would appreciate any feedback.

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:48:25

Archived from Original Forum - kateswmo author

Hello and Welcome Schatzi...

What you have described sounds like what I go through. I am both a "leaker" and a shocker. I usually have some degree of symptoms daily which is the Leaker part. Then I will have 2 or 3 times a month that it goes into overdrive and requires a trip to the ER for my emergency IV meds. This is the Shocker part. I am grateful as I used to be in the ER ever 2 or 3 days, whereas the titration of my meds has helped quite a bit although I still remain vigilant with regards to staying away from most of my triggers. The fatigue, brain fog and muscle/joint pain are the most annoying for me.

Regards,
Kate

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:50:19

[color=#ff0000]Archived from Original Forum - riverwn2 author[/color

Welcome shatzi!!!

I have days now where I dont feel ill--but that took time to get my meds where they needed to be for me.. if you feel bad all the time, your meds arent right yet.. You are on the right ones. You didnt say your dosage though?? I would think youre like alot of us who need the zantac at 300 mg twice a day for one.. you also need a second antihistamine like Claritin, or Sinuglair, or Allegra and you need it twice a day with your Zyrtec twice a day also. The Gastrocrom I have heard takes awhile to make a good change in your tummy, just keep going with it. (Im a cash patient so Im not on Gastrocrom, Im on Nasalcrom spray with Cromulyn in it and it helps me alot)...We all have good days and bad days but.. the better your meds are "tweaked" the more good days you will have.

I have almost all of the symptoms you listed when I first got sick.. but I have so many more GOOD days now.. and you will too :) Hope this helps and you feel wonderful soon!

HUGGS,
Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:51:37

[color=#ff0000]Archived from Original Forum - starflower author[/color

Singulair is a leukotriene inhibitor, but yeah... good stuff. I was skeptical that it would do anything for me since I don't have asthma and I was already taking antihistamines plus Gastrocrom, but it did! In fact, my hematologist has raised my dose from 10mg to 30mg per day.

Good for you, Schatzi, that someone (you? your doctor?) figured out the mast cell disorder!! I have an autoimmune version of MCAD that shares some features with lupus... positive ANA, non-erosive joint pain, complex deposition, etc... Have you ever been tested for auto-antibodies to IgE and/or the high-affinity IgE receptors?

Heather

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:52:55

[color=#ff0000]Archived from Original Forum - shatzi author[/color

Nice to meet you Heather,

yes I have been tested. I have a false positive RPR, +ANA, +ds DNA ab, have had the non erosive arthritis. My rheum MD says lupus or undifferentiated connective tissue disease. Plaquinal has really helped. However there is so much that is not yet known in medicine that I just have to take a deep breath and relax. I find it hard to believe that I have 3 serious diseases and that they are not connected.
polyneuropathy, MCAD, and lupus. Now that really would be like drawing the short straw. lol. I finally figured out the disease with 1000 faces in 1/2010. This would be very difficult to DX without a patient reporting every symptom, it changes quickly.

I am new to blogging so if I repeat myself with replies... I will catch on quickly.

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 15:57:43

[color=#ff0000]Archived from Original Forum - starflower author[/color

The antibodies I mentioned are not part of the standard ANA reflex. In fact, as far as I know the only lab that does the high-affinity IgE receptor antibody test is National Jewish Hospital in Denver. Here's the best article I've found about it:

http://www.nejm.org/doi/full/10.1056/NEJM199306033282204

Although my ANA has been as high as 1:320, I've never tested positive for antibodies associated with lupus, RA, or Sjogren's. However... the mast cell disorder I have IS an autoimmune connective tissue disorder. It's just not a common one (in fact, it seems to be quite rare). Dr. Castells and my hematologist have both suggested Plaquenil as the next step... after antihistamines, a leukotriene inhibitor (Singulair), and a mast cell stabilizer (Gastrocrom).

Your disorders are connected... they're all manifestations of your hyperactive immune system. It's actually not that unusual to have more than one autoimmune disorder. I do. Having one is a major risk factor for being diagnosed with another one! Sad, but true. I've been lurking in another group for people with lupus so I can learn more about it... particularly about treatments like monoclonal antibodies, which (aside from Xolair) are not commonly used in mast cell patients.

How old are you? How long have your symptoms been going on? Sometimes it just takes a while before autoimmune disorders show up "properly" in the tests.

Heather

ps - As long as you keep educating yourself and pushing for answers when you need to, "deep breath and relax" is an excellent strategy for making friends with your mast cells :)

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:00:55

[color=#ff0000]Archived from Original Forum - shatzi author[/color

Thanks for the warm welcome. It is the first time I have made connections with other mast cell folks. I had written a really nice post and somehow lost it, so this is a briefer redo. All great info.

I have known for a long time( 10 years) that there was really something wrong. Lot's of abnormal tests that do not lead anywhere. But it takes time to get all the facts. I always believe there are both good and bad in every situation. One great thing about serious chronic illness is that it really makes you appreciate every moment of your life. I guess I am going through an introspective time now. I was always the planner, so now I will learn to be more spontaneous. Can't wait until I don't feel so ill. Can't wait to travel again.

I know that there will be better days ahead.
thanks for all the very helpful advise

peace,
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:02:51

[color=#ff0000]Archived from Original Forum - lisathuler author[/color

Hi Schatzi! Welcome to the crowd!! I think you find that not only are we able to be helpful, but you're in like company! It seems to me that we're gathering here a group of us who are autoimmune! Heather is one, I'm one, Ramona seems to be too, a few others are showing some markers and much to my surprise Mom:) (Debbie) has unwittingly revealed that she too is one! She insists she's IA cause that's what Dr. Akin told her a while ago, but I wonder if he'd change his tune with the ANA results she's shown!

Deb, you should retest your ANA. It goes up and down, they're not considered constant, but the thing is that once you usually show an alteration it stays that way - but then I'm not up on autoimmune diseases themselves. It wouldn't surprise me that you are Autoimmune Masto like others of us and that's just your only marker backing that theory.

You see, Schatzi, there's NO RESEARCH into autoimmune masto yet! None of us really have answers not even the researchers yet cause this is totally uncharted waters we are swimming in, but they and us! Some of us have been fortunate, like Heather, to find doctors who are saying "Smells like, looks like, sounds and acts like Masto" - Must be Masto! I'm like Heather, an ANA of 1:320 but where are the other markers for rheumatoid arthritis, Lupus, and all of the others out there? And besides, how could I possibly have those diseases when the ONLY symptoms I have fall into masto?!

Big question - DO YOU HAVE FLUSHING? Well, that may seem like a stupid question but it's not, I assure you. The flush is a MAJOR GIVEAWAY!!! There are ONLY TWO MAJOR DISEASES which cause flushing - Mastocytosis and Carcinoid Syndrome! There are flushing syndromes like with wines, drugs, menopause or niacin consumption - halequin Syndrome, Frey's syndrome and even a chemical imbalance with the monamine oxidase dificiency. If you have flushing, which you do, then I very honestly question the three diagnoses. I think you've got your finger on it in that its not three but only one and for now the MCAD/S diagnosis is what I'll bet my money one.

One of the things that has not been studied yet by researchers is the involvement of the mast cells, their mediators and their influence upon the nervous/neurological system. That means that there's still an entire area yet undiscovered! We've been talking about fibromyalgia here - Peter goes through terrible pain and Mike does too! Since nobody's studied the nervous system and how mast cells interact with it, or the mediator release who is to say how it's involved? Who really knows yet if polineuropathy isn't involved?! Until someone begins to study the MCs involvement with the nervous system, there's no answer as to these things! So, how can they say that these things ARE NOT involved? The question remains open. Now, they can say that based upon the majority of patients this may not fit into the classical patient constellation of symptoms. And like we were talking about with the fibromyalgia subject, just because there are mast cells present and they show morphology, it doesn't mean that it's a true mast cell disorder in and of itself. Intersticial Cystitis is an condition where there is an increase of mast cells within the bladder tissues and there are some cases of detrusor mastocytosis due to how invasive the mast cells have become, but excepting the Detrusor Masto, Intestitial Cystitis is NOT recognized to be part of mastocytosis even though a great many masto patients do have this disorder. I do! The reason why is because of the mast cells themselves - there is more than one type and depending upon its genetic make up this is what makes it mastocytosis or not. So many of our answers depend totally upon research and until they can gain more understanding, certain questions and issues of ours unfortunatey must wait!

So, Schatzi, I think you're going in the right direction there in that youré showing autoimmune masto and that you can cross lupus off of your list and your doctor should too! Tell him to speak with Dr. Castells about your case. You're not going to find an immunologist who is higher up than she, except for Dr. Lawrence Schwartz of Virginia Commonweath University in Richmond, who understands autoimmune masto as well as she! If he reads to her his work on you I'm certain she will tell him, Autoimmune masto, especially with those markers of yours!

Keep pushing Girl!!! You're getting there!!!
Lisa

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:03:53

[color=#ff0000]Archived from Original Forum - mikev author[/color

Lisa:
2 items to add on this subject. First there is another class of doctors. Docs who think they all about masto, even though it's not their speciality, and convince the patient as such until the patient through trial & error and forums such as this finds out the doc isn't as smart as he thinks he is and the patient then treats himself through the doc. This type gets very frustrated with the patient. My doc is such. He treated me for years as a shocker not the leaker, that he knew I was. Since he is convinced, as I am, that I have had the ckit mutation. Never worried about my chronic skin pain but more about my flushing & non existant shocking.
2nd item is the neurological pain that some of us who have masto have. My understanding is since the ckit mutation took place in my case it has recruited some skin cells to be masto cells and as such they are releasing histamine and the other agents mast cell do right on the nerves causing the pain, so the nerve are working properly it's just the recruited cells causing the problem. Let me know if I am wrong, as your knowledge far exceeds mine. All I know it was myself who put me on gastrocrom & tramadol not my masto doc. In this area fibromyalgia to me is hard to tell if it's masto related are not. My symptoms & the symptoms from fibro are very similar but the pain is not in just the certain areas that they look for with fibro. My internist who is great and is in your 3rd or 4th class also specializes in RA & fibro and says mine is not fibro. Interesting though my grandma had RA, my mom was diagnosised with fibro, I have masto, & my daughter has RA. Our family genes would make for a great study. Anyway thanks for all the info you provide and hope your mast cells treat you good today.

MikeV

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:05:46

[color=#ff0000]Archived from Original Forum - lisathuler author[/color

Mike, I put the first half of my answer over to the other post - here, just to make it easier to find!
http://mastcelldisorders.lefora.com/2010/08/17/doc-said-blood-is-norm/#post13

Mike, as to my knowing so much more, please, I'm a patient just like you are and trying to find out the answers to my problems too! I think the only thing that has perhaps given me an edge is that although my doctors are doctors, they know absolutely NOTHING about masto, they are learning with me. I do have a masto specialist but I went through a bunch of specialists who also knew NOTHING about masto before I finally, after a year, found my doctor!! By that time, I'd already gotten well entrenched in the masto study! You see Mike, I had no choice, I HAD to have answers because of my deadly aortic aneurysm! I'm a hereditary case of this and they are discovering that we are more like Marfan patients than they'd once thought and my life was in danger. It PUSHED me to have to find the answers even though my doctors couldn't! So, it isn't that I'm any expert - by NO means. I've just been put through the INTENSIVE MEDICAL SCHOOL FOR MASTOCYTOSIS! It literally has SAVED MY LIFE!

Now, Mike, lets talk about that pain of yours!!! The more I am reading and hearing about cases like yours and Peters and that of others with masto and this poorly understood and poorly studied pain, the more I'm seeing that there MUST be some kind of connection!!! Its like why do so many of us have Intersticial Cystitis? Yet, can we call those patients with only IC as masto patients even though they don't have any masto symptoms other than IC?! THIS is where we end up running into trouble with our disease and our symptoms! And this is where we also get our doctors rolling their eyes at our wild suspicions!!!! I kind of relate it to working with my 12 year old son when he wants to philosophy and explain something. The theories he comes up with are so impossible because he doesn't understand the mechanisms behind it. Yet, there are times that because he's not imprisoned by a set of rules, he comes up with some pretty amazing conclusions! I've done this in my own case! I've raised suspicions that my own doctors rolled their eyes, including my masto specialist, but after Dr. Castells confirmed them, nobody could deny that what I understood about my own body and had studied about the disease and thereby formed conclusions ended up revealing the truth of my situation!

Mike although they have not studied the nervous system and how masto interacts and is involved in it, it doesn't mean it isnt'!! The discussion with Peter about the fibromaylagia case with spindle shaped mast cells is very, very interesting! My own case where they have seen that the direct involvement of the mast cells with aortic anerusysm is impressive and that one of the mast cells and the fat cells and the supposed link to obesity and possblely diabetes, is INCREDIBLE!! The fact that the researchers are now finally beginning to admit that their viewpoints for studying this cell may have been to narrow says a tremendous amount!! Mike, you KNOW your body and you KNOW how it's being affected! The researchers of this disease, although they know the disease and study it do not have the disease themselves so they don't have this personal experience to help them understand it even more!!. They do know that there is so much that they still don't know and the fact that they are openly admitting this by now holding this new WHO Consensus meeting officially recognizing other forms of mast cells disorders shows that they don't know as much as they thought they did and that there's a whole world yet undiscovered with MCs involved!!

We patients can't wait upon them for all of our answers! There are times we must push ahead and find them for ourselves! Sometimes, like with me, our very lifes depend upon it! Mike, it's very possible I would be here right now if I hadn't pushed HARD for my answers! Only God knows that one!

One last thing. Mike, I would suggest to you to have some autoimmune testing done! If they may end up diagnosing something, but if you come up with vague results like Heather and I, not being able to diagnose any specific disease, you would definitely have a case to study! It would prove that a UP patient could also be autoimmune! I'd bet you anything that Dr. Castells and Dr. Schwartz would be very iterested in your case then! To the best of my knowledge in talking with others who are autoimmune - we don't have spots! We're purely systemic! So let me suggest this to you!!

Lisa

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:07:05

[color=#ff0000]Archived from Original Forum - shatzi author[/color

Good evening to all,

It is so strange to hear so many similar stories about disease histories. I also had interstitial cystitis in my 20's. followed by endometriosis with uncontrolled bleeding in my 20's. ( mast cells can also release heparin which can cause bleeding). so had to have hysterectomy in my 20's. About dr castells, my doc works in the same office as she does. Dr david sloane at brighams & womens. what a great guy, always takes my call on his cell. I do not know where I would be without him. When I saw him I told him my ideas about mast cell disease and at least he did not roll the eyes. It helped that I was really flushing and had dermatographism at the ov. I also had been taking some really attractive flushing self portraits that I brought with me. Very few diseases cause this many systems in the body to go haywire.

I have documented proof of peripheral poyneuropathy. very painful. I have such severe pain in joints and muscles. also, a very strange sxs, could be neurological in origins not sure. I get extremely stiff if I stay in one position for even a short time. anyone else have this. I can barely turn myself over in bed at night. Sounds like I am 90 years old! My PCP said try yoga. LOL. I can barely get up from a chair after sitting. although in truth it could be helpful I guess.

These areas of immunology, neurology and rheumatology are areas of the great unknown in medicine. treatments are often trial by fire and the more one reads, the more questions you will have.
Neurontin can be a good drug for pain. I have used it in the past for neuropathic pain and may have to again. I like to start one drug at a time. cymbalta can also help with neuropathic pain.
I am feeling less alone in this since I have hooked up with this forum. So thanks to everyone.

schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:08:03

[color=#ff0000]Archived from Original Forum - lisathuler author[/color

Hey Schatzi! How GREAT that your doctor actually works with Dr. Castells and Akin! You could not have a better situation!! I'm JEALOUS! And it's WONDERFUL that he's so attentive to you! That's how it should be! We all have TOO many issues to be left on our own!! I'm sure my doctors wonder how one patient can generate SO MANY issues!!!

Glad to have you aboard, Schatzi! The more the merrier!!!! And for some of us, like me, this is my ONLY contact with masto patients, so I've so greatly benefitted by being here too!! I'm continually clicking my heals three times!! There's no place like Home!

Lisa

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:09:11

[color=#ff0000]Archived from Original Forum - riverwn2 author[/color

Schatzi Im gonna follow your progress with much interest and see if it might help nme too. I have horrible bone pain (spine to both hips, both shoulders) , I cant stand or walk more than 2 minutes without feeling like Ive been tortured. I used to wake up crying in pain but thats better since I take one half pain pill before I go to sleep. Im game to different ideas and solutions so let me know what works for you if you find a good solution :)

Thanks!
Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/06/11 at 16:10:36

[color=#ff0000]Archived from Original Forum - shatzi author[/color

Good morning folks,
The bone and muscle pain is quite debilitating. I used to be very athletic. Now if I walk 1/4 mile I am lucky. But it is best to try and maintain some level of fitness, as deconditioning can also make you feel achey. But its hard as everyday is so different. Last night I was rocking back and forth in pain and today its gone. I seem to see a corolation between a flare up and then I have a pain episode. It can last weeks if my pool is not available(winter).

one of my saving graces is swimming. It is my secret weapon on pain. it keeps the pain away for days. it also keeps you cool so there is no flushing. I also use dog therapy. It has been proven that patting a pet can lower pain and calm you. It lowers blood pressure and anxiety. I also use comedy. There is no way I can not laugh when hubby pops in will ferrell's "anchor man", or monty python!

I am lucky as I live outside boston area and have masto specialists near by. I will be moving to colorado this year, we have a home there as well. I will be selling my home in new england as I can no longer care for the gardens and large home. We have no kids so we can go wherever. I do not think I will be able to continuing working. I had high hopes but I think I have been hiding my head in sand and need to face the truth. but I cannot lose all my income at this time. too scary!

I saw it mentioned that you can apply for disability even if you are still working? I am down to part time now. Bummer! Its not just the loss of money but the feeling that you have crossed a mental bridge that means you are really sick.

I must say that I feel mentally better since I joined this group. I had searched and could'nt seem to find a like minded group.

I just keep my favorite fortune cookie quote in mind "it is not the destination but who you become along your journey that is most important"

peace,
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:35:15

Archived from Original Forum - starflower author

Hi Schatzi,
That's a wonderful quote! I was just thinking a similar thing this morning. I really love this group of people. When you're dealing with a scary, misunderstood disorder (like we are), compassion and empathy are just as important as any medication!! It feels just as good to give as to receive
Heather

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:36:25

Archived from Original Forum - riverwn2 author

love that line shatzi!
Im sorry you are having those changes and the sadness from it but Im glad youre doing what is right for YOU. Yes, you can apply for disability as long as you can show the disorder is making a substantial change in your work ability and income from it. There is a whole thread where we talked about it--what to do in what order. If you can find that thread I think it might help you.
Thinking of you,
Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:37:37

Archived from Original Forum - mikev author

Schatzi:
Welcome to the group. It's amazing how similar & how different masto can be. I too have the neuropathy pain but centered in my skin, not in bones or joints. I am able to walk for an hour no problem except I have to cool down my feet afterwards. When conditon first came on was my feet only and went to 2 neurologists and had nerve conduction tests done, the 2nd after I went systemic, i.e. all over my body, if anyone has had one you can only imagine the pain. I was on neurontin for over 6 months, took both lyrica & cimbalata as well as tricyclates with no help for the pain. Finally my 2nd neurologist who is well respected told me I had something disgusing itself as a neurological problem but wasn't neurological and sent me on my way. I keep looking & taking blood test after blood test coming back normal till I atleast found a doc who found through a tryptase test that I had systemic masto center in my skin. I to find the exercise I do helps atleast for a while. I to envy you being so close to Boston & the masto doc up there. But I just want to say my thoughts on neurotin/lyrica. I was on these drugs when I went systemic. Now this type of drug & the tricyclates trigger me. Also for me the side effects were very bad. Bad, Bad thoughts and anybody who has seen histamine brain fog it was worst on neurotin. Also coordination went to zero, actually had episodes of falling out on walks & before masto I was a competive tennis player. So buyer beware of the magic potion they are pushing so hard for fibromyalgia & neuropathy. Lisa maybe right mine is so different it maybe autoimmune that I need to look into. Anyway good luck to you & glad you found Deb's forum. It's a great caring communtiy. & your thought is very touching as most of us with masto want our old selves back & would do anything to make that happen, but the ongoing journey has change me in some good way I just wish it wasn't so painful.
MikeV

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:38:33

Archived from Original Forum - schatzi author

I agree about the journey. I consider myself very hearty. It takes alot to deflate my balloon. But this disease has brought me to places I never thought possible. Just when I think hey it could not get worse, it shows me the ugly truth. But overall I feel that I am always where I need to be for a reason.
I am on cloud nine as after 2 weeks on gastrocrom, I can eat! This drug does not "wear off" so fingers crossed. I spoke with masto doc today, he still feels uncomfortable labeling this yet, and tends to go back and forth, but we both agree that the response to the drugs most likely points to MCAD. tryptase is normal x1. He stated if the drugs are working then who cares if we do not fit the criteria. Diagnostic criteria is very loosely interpreted in the medical field. In general, the closer you are to a large teaching or university hospital, the more serious they are about the criteria.
Mike, I agree about the side effects of the above mentioned drugs, there can be a wide range of responses. Neurontin is a seizure drug that has been labled for neuropathic pain use, but it is not tolorated by many. I have such empathy for anyone who has this pain. It is the worst experience ever. And we all know about the blank stare you get if you mention uncontrolled pain at doctors visits. Mike, what were the results of your EMG?
This is a really warm group of people, some of the other sites may have either younger folks or more angst but I liked the positive vibe here. this is my first time blogging ever. its fun. I will have to check out some of the other threads such as disability, I go back and forth with this. and since I do not have 100% firm DX, who knows if it will even be possible. thankd again to all.
peace,
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:41:52

Archived from Original Forum - schatzi author

Hello to all,
Hope it is a good day for everyone. I was curious about a strange symptom I have. SInce I also have alot of nerve damange it could be from that but I am not sure. If I do any physical activity, within a few minutes I stiffen up really badly and it is hard to move. Actually, even if I just sit at computer for a few minutes I get really stiff and I take a while to be able to stand up. I try to push through this as I just thought it was the nerve damage, but maybe its masto?
thanks,
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:42:53

Archived from Original Forum - mikev author

schatzi:
I too get stiff after a mild workout or sitting in same place too long like at work on the computer but I attirbute to getting old. Just turned 64.I don't think my nerves have been damaged either in fact both nerve conduction test came back with the same result. Something was interfering with nerves performing correctly but like my last neuro doc said. It was something posing like neuropathy but really just the opposite too much going on with the nerves not neuropathy. She was the one who ran all the blood test on my like lupus when I didn't respond to any of the normal neuro drugs. In fact she was very smart. Out of the blue she said I don't know what it is but I know stress effects it negatively. At the time I thought she was buzzing me off as a nut case but she was smart enough to tell me the truth and send me to continue my search for a diagnosis not continue the neuro avenue. I think It's great that gastrocrom is working for you. Mine is so little stomach related but gastrocrom has helped my skin. I just need the ultram some to keep pain manageable especially stressful times like at work. Good part about Ultram no loopiness. Have not thought about disability. Got a daughter with RA to take care of. Working to her get her disabled but at 32 very difficult. On the gastrocrom just make sure you take it like they say 4 times a day. It's a major pain planning your whole life around what time to take you drugs, but remembering what it was like without them makes me stay on schedule. My tryptase unlike yours is elevated but not real high in the 16-20 range, which the more I study is the norm for a leaker versus a shocker. I'm glad you found the group as well, one of the first people I could talk neurology to & I had 1 1/2 year experience with it. Contined good luck & keep up the fight, although from just the few posting that you have done, as I know you will.
MikeV

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:45:03

Archived from Original Forum - schatzi author

hi mike
I know its hard to have so many unknown factors to deal with. I still remember the look on my neurologists face when he was doing the EMG/NCV test and he kept going over the same spots, he said he was shocked that I had such severe nerve damage. There are lots of reasons. thyroid disease, alcoholism, lupus( which I have), diabetes, syphilis, anemias to mane a few. I was also found to have a component of autonomic dysfunction which affects things that are not in our control like vital signs and breathing. I have noticed that many folks here have a component of many systems of the body going haywire. I even had a muscle biopsy which was abnormal but only really showed chronic nerve damage and muscle damage.
I am hoping the gastrocrom keeps me going, although as I write this I am home from work in bed, had an episode today. I guess from others posts that this will still happen from time to time regardless of how many meds you are on.
I have to set my cell phone alarm so I do not forget to take it, the first week I was so ill I did not care, but yah, it is getting old after only 2 weeks. oh well. Hope your daughter is ok. Thanks for the info.
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:51:35

Archived from original forum - mikev author

Hi schatzi:
It always amazes me just when I think my issues are long & growing considering the mold here has been hovering around 20,000 for a month & my sinuses went crazy that I read stories like yours. Gastrocrom like I said before was a good addition to my meds but doesn't stop the flares just like you mentioned yours today. That's why I take ultram on those days & the stress days. I can see with all the nerve damage you have had that maybe lyrica or cimbalta would be an answer. The only problem is whether they release histamines in your body. I only tried those for about a month each when I was in the stage of not knowing what was going on so it's not fair for me to judge them accurately. Each med I tried including prednisone worked for about a week or so till symptoms came back during that 2 year period of looking for the problem. Due to my age & symptoms, neuropathy was thought at first to be the problem even though I was very healthy & still am healthy except for masto. So don't give up on gastrocrom it takes a while for it to really work with your system but just remember it is only a part of the package needed. & even with the meds our bodies find ways to take us for a ride.
May you feel better soon.
MikeV

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:52:26

Archived from original forum - shatzi author

thanks mike. I hate the sick bed days. But better days ahead I am sure.
peace,
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:53:31

Archived from original forum - riverwn2 author

Hi Shatzi!
I can only give you my opinion and experience and I dont know what thats worth LOL.. but I have the same thing--if I stand or walk for more than 2 minutes I feel Im being tortured. Im in so much pain... Its sudden and its debilitating. I can say its affected my life to the point where I only worked 3 days last month (and I cheated and took prednisone for 2 of those or I wouldnt have made but one).
Especially standing in line at a store is excrutiating. I often ask my hubby or a relative to pay for my purchases for me while I go sit in the car. I used to LOVE grocery shopping--I would smell EVERYTHING and wander the isles making creative meals in my mind. Now I use a zippy cart--which embarrasses me, but I cant make it any other way, to the end of my shopping list. I go once a month now and dread it.
Im trying different things to stop or alleviate it but nothing works well enoiugh yet. I will certainly let you know if I find anything that helps.
Hugs,
Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:56:48

archived from original forum - deborahw author

Oh gosh, guys. I am sorry to hear you are in so much pain! At least banding together here on the forum, perhaps the shared information will help find a remedy to lessen the symptoms. You never know, one of us might hit upon the lightbulb and figure out what helps. :)

Schatzi: I haven't had a chance to give you a proper welcome! Glad you are here and making new friends! What a great bunch of people we have here.

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:57:47

archived from original forum - schatzi author

thanks deborah,
It really has been a help reaching out to others. I have been sick for a while but have only recently told friends and family. I swear by water therapy and my dogs for my pain relief. So my running joke with my hubby is that dog spit will cure me. Lots of kisses. ( For the non dog lovers I am sure this sounds gross-sorry).
ramona, so sorry to hear of your pain. As hard as it is to be in pain, knowing there are others suffering is somehow harder. I was always really athletic, and I would notice that the more I worked out the less fit I became. I would not be able to move after. Now if I go to a movie or meeting, I have to wait until the room clears out and then stand up. I can barely straighten up and walk. very strange. I believe it is the polyneuropathy doing this. The joint, muscle and long bone pains are the worst sxs. I also use music and imagery. you can practice relaxing breathing while listening to music. then you practice letting your thoughts go to a better place. could be a special moment or a vacation place you love. There is so much out there about the mind body connection. but I would say that with severe chronic pain, you need to separate the mind body connection. I have to really use healthy denial to function day to day.
I am down to part time work now. but standing for long periods is never good. when dealing with a disease like mast cell, all of the mediators being released could cause so many different actions and reactions in our bodies.
Not sure what I may have done to cause a flare up today, had to call out of work. I ate tuna yesterday, but I had been ok with it before. probably a bad decision on my part. I am thinking of putting a bed in my bathroom, so I can be more comfortable in there for hours at a time. (only kidding).
I really am so greatful to have found this group. It was just what no doctor has unfortunatley suggested. You would think that with a disease as nasty as this social support would be a suggestion by all our providers. well, maybe we will all continue to educate our providers.
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:58:43

archived from original forum - deborahw author

Hi Schatzi,
I am 99% sure that tuna is on that list of histamine causing foods that we should avoid. Knowing ahead of time what foods tend to cause trouble for mast cell people will help you avoid problems. The thing is that we all react differently and we don't all react to the same things. LOL. How lucky we are, huh? It appears, though, that certain things, such as shellfish and alcohol, tend to bother nearly all mast cell patients (according to the researchers, that is). There could be the lucky person who could ingest those items, but I certainly wouldn't want to test it out. (Actually, I already know that those items put me into anaphylaxis!)
One of the best things you can do is to keep a medical diary, especially of foods that you eat, and mark down how you feel after you eat them. This will help you truly identify your safe food and your danger foods.
Have a great evening

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 03:59:40

archived from original forum - jysmith author

Hi all!
Don't know that this will be helpful, but thought I'd throw in some thoughts about exercise that has worked for me. I have a lot of problems with inflammation, and it seems to be the enemy of exercise, but exercise seems to help my inflammation over time. Makes it awfully hard to stay in shape, though!
For me, there are a few things that have made it possible to exercise, and I've really suffered with rebound pain from exercise and even from just walking around the house or standing up too long. There have been several times that I've had to work back up from being completely de-conditioned, and it's not for the faint-hearted! But, I have to say it's been worth it in terms of increased energy. Of course, if you're in a horrible flare, don't push yourself. Wait until you're having a pretty good day and take it very, very slowly. Just moving around in a warm pool can be really helpful and a good way to start if you have access to one. If not, there are plenty of free ways to exercise.
ALWAYS start with slow, gentle stretching before exercising (minimum 10 minutes, 20 is better). Hold all stretches for at least 20 seconds to get long-term benefit from it. Yoga stretches are great, and there are also some programs on FIT TV and some other exercise channels, or there are stretching videos at public libraries.
Stretching after exercise is also critical, same thing as before. Sometimes I even stop in the middle of a walk or workout to stretch a little.
Build up exercising slowly. Start with a short walk, even if that's just from the bed to the front door and back. Use a can of food or a one-pound weight to start doing upper body strengthening.Just because the first workout felt really good, doesn't mean you should do double the next day. Build up really, really slowly. If you start doing too much, you can have rebound pain, which doesn't make you want to do that again!
Heat and Ice. If your muscles aren't warm, a little gentle heat will help loosen them up. If you're in really cold air conditioning or in winter, this might be helpful. After exercising and stretching, ice your neck or low back or hips or wherever you think the pain originates. NEVER ice before you stretch or exercise, because it stiffens the muscles and can cause an injury. But, after exercise and stretching, it might help reduce rebound inflammation and pain.
Medication. Take extra antihistamines before you exercise, if you think it will be a trigger, and pain after or during exercise can be an indication that you're triggered. If you can take Tylenol or NSAIDS before you exercise, that might be helpful.
Somebody on the forum said she'd signed up for a cardiac rehab program, which sounded like a great idea, or even physical therapy (which I've done a couple of times), because insurance pays for it, and it's designed for people who are starting from square one.
Hope that is helpful. Hope all of you who are hurting have a better day tomorrow! Joan

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 04:01:16

archived from original forum - riverwn2 author

Thanks Joan, those are some really great suggestions and I want to try a few to see how it can help me. I have to wait a bit though, Im having such nausea about 80% of the time, that my biggest activity is sitting absolutely still til it passes LOL.. It will be better once I can get Gastrocrom Im sure--that will take me about a month but its worth waiting for. (also trying to replace my phenergan with zofran). That tip about taking some antihistamines before exercising is gold! Maybe that would help before grocery shopping too??
I do alot of the mental imagery too and youre right--i would have trouble day to day without it. Its funny, I used to be capable of shutting off pain 100% below the neck anytime I wanted, but this disorder pretty much deleted that ability--but I still use it whenever I can :)
The pain level is so different day to day, Im never sure what type of day it will be when I awake. Im lucky that I can still take pain meds but Im veryyyyy careful about it. I only take one half of a vicodan and sometimes I add a benadryl when I get paranoid LOL.
Im lucky too that I live very near to a beautiful river with springs --the Ichetucknee, and I can go swimming anytime I want. Im going to make more excursions and try to relax there more often :)
Hugs to everyone :)
Ramona

PS Debbie... Im backing wayyyy off on my tuna... I find Im growing more sensitive to histamines in foods I am usually able to eat.. dont wanna fill up my cup :)
HUGS,
Ramona

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 04:03:12

archived from original forum - starflower author

That happened to me too! I used to be able to eat small amounts of cheddar in a salad or... my favorite... jalapeno cheese grits (yum!!). Not anymore. It gives me insane heartburn. As much as I love it, I've also stopped eating seafood completely (shrimp, scallops, clams, etc...). I don't want to get to the point where I have severe reactions even to traces of seafood. Red Lobster is one of the "safe" places my family goes when we're traveling... I get fish with broccoli and a baked potato.
Heather

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 04:04:08

archived from original forum - schatzi author

all great info. I really should not have eaten the tuna. I was a fishoholic. I have not eaten any for a while. I had a horrible reaction and shocked with lobster and clams so goodbye to old favorites. Alcohol is out, thats bad as well. within a few minutes my face is throbbing and red, my pulse shoots up and everyone knows the rest of the story.
I should say that I had read that things like white rum and vodka is fine and I did have some white coconut rum and did not react at all. But who knows. I found it online on a histamine free diet. The crazy thing about this disease is that there is no pattern at all. It could be that the food item alone is ok, but add a little stress that day, a little sun, a little exercise and whammy. We can only do the best we can I guess.
I'm glad you love the mental imagery Ramona. I find this can take me places my legs can no longer go. I used to go white water rafting, hiking in mountains, camping. I also have traveled around the world by myself. but now must be more careful. I still feel so young, hate to be so cautious. I am only 46, thats the new 18 is it not????? (maybe just the brain fog here) well, I need to brave the grocery store, my gut keeps toying with the idea of staying put today.
peace
schatzi

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 04:05:03

archived from original forum - deborahw author

When I was in college, I was determined not to gain the freshman 15 (pounds, that is), so I would actually eat tuna and green beans every day for lunch at my sorority. LOL. ALl the other girls would eat the super fattening food made for them by the sorority cooks, and I would walk in with my tuna. No mayo, just tuna in spring water. My friends all would laugh, but I was still able to wear my bikini at the end of the year! Haa! Once I found out that tuna had high mercury levels, I stopped the tuna, though.....Happily, still didn't gain weight. Nope, the weight crept on when I got pregnant with twins. Still trying to get rid of it 10 years later! Uugh! Not giving up, though....

Title: Re: Symptoms of an attack?/flare up?
Post by Lisa on 01/13/11 at 04:05:58

archived from original forum - riverwn2 author

Tuna used to be one of my safe foods--not only did it not react with me but I could keep it down when my tummy wasnt feeling good.. probably more of a mental thing thinking it was so healthy for me.. I probably over did it this summer... so Im cutting it out at least for a while then very seldom.
Shatzi I know what you mean about how young you feel opposed to what your body will tolerate. You sound like youve had an exciting life! Id love to "do lunch" with you and listen to your stories :) Wish we lived nearer~! I used to go camping very often. I hiked trails and made my own more often--I wanted to see places other people hadnt been. Traveling is one of my very fav past times but now id rather stay home where Im comfortable in my own surroundings.
We went out for Mothers Day (my kids treat to me) and they had a raspberry something to drink--I took one sip of theirs I didnt dare risk more than that--it was soooo good,,, next time I will order one for me--and make it a virgin one, just to join in :)
Heather youre singing my song LOL ....I ADORE Red Lobster. I go maybe twice a year so I wont react on the coconut shrimp, crab or lobster that I love. Its a treat Im very careful about.
Debbie, my daughter is now grown and in college to be an RN. She graduates in April and has given me a 5 year old grandson Andrew, who is hilarious. His antics keep my laughing constantly. He walks past a table of teachers during kindergarten lunch, stops and gives them thumbs up, saying "Looking good, Ladies!". The first grade teachers fought over who got him this year lmao.
Schatzi, if you could go anywhere in the world (not sick), where would it be? Ive always wanted to go to Italy :) I want to sit in an outdoors cafe and watch the world walk by. I would eat with my fingers, talk with my hands, haunt all the museums and churches for the art, pinch Italian men butts LOL.. and laugh til it hurt :)
Have a GREAT day everyone!
Ramona