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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Go for the Goal! The Motivation Thread! >> Go for the Goal! The Motivation Thread! >> More good news! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1300905149 Message started by Starflower on 03/23/11 at 07:32:29

Title: More good news!
Post by Starflower on 03/23/11 at 07:32:29

I've been trying to figure out why I have recurring swelling and severe pain in my lower abdomen. I've had TONS of tests, including a recent ultrasound and a PET/CT scan... nothing ever turns up. My GYN has drawn a blank. The best guess I have right now is that it's angioedema, but not allergic... the pain doesn't respond to any of my usual mast cell medications, and I don't get hives or any other "allergic" symptoms during these attacks. Just the swelling and pain. Tylenol does nothing... I've been forced to take an opiod for the pain. Liquid Benadyl does get rid of the nausea from taking Lortab... just not the pain in my abdomen ;)

Anyway... last night I e-mailed Dr. Castells. I explained my situation and asked for an appointment. And I got one!!!!! June 9th. I'm am SO excited. I was already planning to be in Boston that day for a conference, so making a side trip to Brigham & Women's should be a piece of cake. Whoo hoo!!!!! :D I've been through some upsetting events in the last few weeks (long story), so it's nice to have some good news for a change. I also think Dr. Castells is my best hope for figuring this out... even my hematologist had no answers.

Heather

Title: Re: More good news!
Post by cjoy on 03/23/11 at 09:11:04

Sorry to hear about your pain. Sounds very difficult to deal with and frustrating to have no answers. I'm sure that they have already tested for this but my first thought was that I wonder if it could be endometriosis. I know it can be difficult to test for (short of looking inside) and certainly can cause a lot of pain. One tricky thing about endometriosis is that the severity of symptoms don't necessarily correlate with the severity of disease. Pain is severe if the lesions happen to be on a nerve but the disease may be mild and difficult to diagnose. Just a thought.

Glad you have an appointment but wish it was sooner. June sounds like a long time away when you are dealing with that kind of pain. Hope you get answers and relief soon!

Title: Re: More good news!
Post by Starflower on 03/23/11 at 10:23:26

I definitely thought about endometriosis... my mom had a hysterectomy for that reason around age 40. It's true that you can't know for sure without exploratory surgery, but nothing showed up on my ultrasound. My GYN told me that I don't have endometriosis or fibroids. Unlike a lot of doctors, I actually trust her opinion ;)

I was expecting that I would have to wait until the fall, so June sounds great to me!! I can be patient... Dr. Castells is worth waiting for. It would be a different story if the pain was every day, but thankfully I feel pretty good in between these attacks.

Heather

Title: Re: More good news!
Post by cjoy on 03/23/11 at 10:36:37

I also had a hysterectomy at 40 for the same reason and that is why I thought of it. I'm sure your gynecologist knows best.

Glad it works for you to have an appointment sooner. Hope you get some good answers!

Title: Re: More good news!
Post by Lisa on 03/23/11 at 11:25:03

Heather, Dear, have you had a doppler ultrasound? That would take a look at the blood flow in that region and it's possible that there may be some interior vericose veins. They can be VERY painful depending upon where they are located and this is a common enough finding amongst women due to our child bearing. We found one by accident by doing a abdominal doppler looking into the motive for the kidney pain, so it was a surprise finding. When I spoke with my angiologist about this - a vascular doctor - she told me that these are pretty common with women who have multiple childbirth due to all the more intense blood flow that the baby needs. Yet it doesn't necessarily have to be within the uterus, it can be anywhere within the pelvic region and, it would make sense to end up hurting more during the monthly cycle when there would again be more blood flow within the region - also more weight associated with the increased blood within the uterus.

Perhaps this is a consideration.

Lisa

ps - Sorry you're so miserable with it!!

But CONGRATULATIONS ON THE APPOINTMENT WITH DR. CASTELLS!!!! Give her a big hug for me!!! :D

Title: Re: More good news!
Post by Starflower on 03/23/11 at 13:14:24

Hi Lisa,

I didn't know it was possible to get varicose veins in that area... you learn something new every day!

Anyway... I found this web page about it...

http://www.sirweb.org/patients/chronic-pelvic-pain/

... but I don't think this is the answer. My pain is severe and comes in monthly attacks. It's not "dull and achy" and (sadly) it doesn't go away when I lay down. I wish it were something this easy though! I have no desire for any more freak shows.

Heather

Title: Re: More good news!
Post by Lisa on 03/23/11 at 14:19:22

Now, Heather, remember, if we were to go by the descriptions of masto, you'd have ruled yourself out long ago! LOL! ;)

It's worth a shot, and it won't cause you any issues since it's not an invasive exame nor uses contrast. And, here's something, although you've got a point about it not going away when you lay down, mine doesn't give me these issues. I almost rarely feel it, but since I don't have my uterus anymore I don't know how it would be were I to have that monthly situation. You see, you've got to remember that with the menstration comes that typical retention of fluids and things press on one another at this time.

I feel what I believe is my vericose vein during two situations. Mine is located on the exterior portion of the vaginal canal. When my bladder is full, it gets pressed at that time. Also during relations with my husband. And, there are times when the pain is worse, and I have noticed that it's indeed more sensitive when it's that time of the month for I retain my ovaries and they have their hormonal release and even though I have no periods, I do have the changes that come with the hormones. This could be worth investigating.

And, as you know, even a negative helps for in ruling out any vericose veins, it's one less thing it could be. So, consider this possibility.

I wish I could make boo boo better!!! Here's a kiss though! :-*

Title: Re: More good news!
Post by Josie on 03/25/11 at 08:32:15

Hi Heather ;-)

Regards endometriosis , it was suspected in me . My gyno said it can only be diagnosed by a laproscope . If it has resulted in adhesions or collections these can be seen on USS . But even CT misses small endomerosis lesions . I know you trust your gyno and i suspect you don't have anormal consellation of symptoms so she doesn't wish you have an un necessary invasive procedure . I just wanted to say ;-)

I have idiopathic angiodeama as my diagnosis . I commenced vestril and my lower abdominal pain is much improved as I had bladder spasms from intersitial cyctitis and womb spasms . With bowel abgiodeama and spasms making my whole situation more difficult . My rectum regularly swells where I feel I need to go but there is nothing .

I have had a gyne and surgical workup and they have drawn a blank . Strong antihistamines are the only thing that has delt with the spasms .

Buscopan worked for me but it interacted with my anti histamines and I slept like a baby . I was recovering from a large shock - CT contrast 7 doses of adrenaline and another 3 weeks later . So my exhaustion may have been due to that .

I have searing back pain which radiates down my legs and makes my legs shake . I have had a neurology and rhumatology workup . I have a fibromyalgia diagnosis . But that was very early in all this and my pain and other symptoms have other explainations now . I do fibro things - pacing myself and soaking myself in cool baths . None of the fibro drugs worked .

I believe this pain is due to lymph nodes being full in my pelvis and pressing on nerves . I get ataxic when walking more than very short distances . From young when i was due on my period my womb would hang low . Now I am like that permently ,

I hope your pain is improving ,

hugs

Josie

Title: Re: More good news!
Post by Lisa on 03/25/11 at 10:48:18

Josie,

Some of the pelvic pain is most likely the internal swelling of the tissues that the angioedema is creating. This is why I suspect this in you after reading a medscape article about angioedema for it said that a classic symptom is the genital swelling as well as in the legs and hands. If you've got that kind of edema happening on the exterior, believe me, it's also going on in the interior as well and when you go reacting all of those interior tissues up into the pelvis, up around the uterus and the lymph nodes are going to kick in with this. This is why you angioedema patients are in such danger for it's not the mere skin tissues, but the deep, internal tissues which are also swelling. This may be why certain forms of angioedema are not considered a mast cell disorder, even though it's easily confused for it, because there are different mechanisms behind it.

But I'm sure that much of your pelvic pain is involve din this for after all that swelling, your lymph nodes are going to work over time to mop it all up and I'm sure this also creates issues with them. Then you put fibromyalgia into the pot...! YIKES!

I'm sorry you go through such torture!! I must be awful!

Lisa

Title: Re: More good news!
Post by Josie on 03/25/11 at 11:58:59

Hi Lisa :-)

Thanks for your understanding . Your description is bang on . I was trying to say but kind of didn't .

I know it may not be mast cell but antihistamines are working . So its a maybe ;-)

I don't talk a lot about my shocks . It is these that keep me persuing this .
I have flushing bright red burning , sometimes pale .
early warnings - coupe moments and feeling grouchy for no reason .
I then itch ++++++++++++++++++++++++,
swell in areas I dont have my niggling swelling +++++, and more in the areas I do
Vomiting , bowel swelling , cramps and diarrhoea
i get wheezy ,
i get dizzy , jiddery
my heart races , banging out of my chest .
my wheezy is audible from afar ,
my thoat swells inside where i cant get to it increasing to closing
i can't move any air , blue
passed out , unconcious .

A major shock is through the symptoms in 3 minutes max . I epipen these every time . Some niggle then go full , i epi pen these at heart banging phase and avoid unconciousness .

I have passed out 5 times in the early days when I wanted to control this . I learnt . i epi now . In quick ones I need 2 lots of adrenaline all the IV offerings - steriods - hydrocotisone 200mg IV , piriton 10mg IV and ranitidne 40mg IV . I have multiple nebulisers - salbulamol ( albutarol ) . I have also needed IV magnesium to settle the wheeze .

i sometimes have a Bleed from my bottom in ED or my period starts .

My biggest concern is snowballs . Where I react and within days again , a week again etc . I have had 5 of these times .

The first was assoc with major stress . I was living with my sister and she was gambling . i had finally had enough . We argued and her husband hit me . I was homeless . i went to a refuge , a week later after an evening of fish and chips ( I know I had no idea what to avoid at that point ) I had my first throat close . The snowball began then . One shock the next month and then 5 in a month .

I was getting this 3 weekly for a year , weekly in April . I am now on 3 monthly . Spring is an unknown entity , but my meds are helping . the other major factor is trigger avoidance . For me these are foods , sulphites , alcohol , vinigers , infection , hormones , heat , emotional and physical stress , increase in IGE allergies - cats , grass and house dust .

I know it could be angiodeama from any source , but the nature of my itching and swelling suggests histamine ;-)

The new antihistamines are really helping and singulair has changed my chest significantly . I know singulair works all all types of angiodeama ;-)

My chest xray has been described as not normal ?????????????????? Another question I have posed to the new doctors .

For those who don't know about angiodeama . It can be from 3 broad groups . Autoimmune , kinin - heridatory angiodeama and histamine .
In me autoimmune has been ruled out . HAE type 1 and 2 have been ruled out . Type 3 has no definitive test and the new docs are not wanting to go that way yet . The treatment is traxamic acid , which had been ruled out as I had had heparin and had reacted . traxamic acid has a potential side effect of DVT . I asked the doc reacntly about it . he said the DVT is more theoretical than actual . So it is a possibility .

This leaves histamine as a cause . My tryptase remains normal . 3 .

They want my reactions proved currently . i have requested my 999 call recordings and paperwork . This will resolve this hurdle ;-) As my airway distress is obvious and my oxygen level is low .

I am glad treatments are being offered .

My day to day symptoms are less intense versions of shock .

I have hope in my back pocket ;-) i deal with it , don't complain much even of pain unless its over 5/10 . The meds are helping ;-)

many hugs ,
Jose

Title: Re: More good news!
Post by Lisa on 03/25/11 at 13:47:36

You certainly do go through a rough time of it Josie!! I've always been amazed to hear what you have that's hitting you so hard! You've freaked me out a couple of times too!!!

I sure do hope they come to the bottom of your case soon and can find you some adequate treatment.

It seems obvious that you've got major histamine release going on there, but from where? Do they have any way to verify where that histamine release is coming from? There must be some other mediators as well. Have you done any methyl histamine tests or blood histamines? I know they say that the histamine release is so short lived and that the best of the tests to do is that of methyl histamine, but we don't have methyl histamine testing here and they did a regular urine histamine test with me and caught it. I can't help but think that they should be testing for some of the other mediators other than just tryptase. What about the prostaglandins. If they can verify where that histamine is being released from it would certainly help them figure out how to treat your case better and that would pull you out of the tight fixes you get into at times.

Oh, btw. I'm sure you're going to think I'm strange, but I am a bit OOTL - out of the loop at times. Josie, what is niggling? Sometimes you use these words that leave me trying to translate it and I'm certain that it's because I've not been around any Brits in a really, really long time!! So, can you translate it for me please?

Title: Re: More good news!
Post by Josie on 03/26/11 at 05:04:05

Hi Lisa ,

:-) Niggling , is for me annoying symptoms which aren't serious - a flush with no other symptoms or a bit of itching and flushing bit not intense itching . Symptoms of histamine release that don't develop - to anything more - not shock . An extra dose of antihistamines stop them . I don't know if I am alone in this .

Please ask anything I say that you don't understand as I do find my humour is lost sometimes .

I fully agree with you ;-) I need some other tests ;-) I asked the new medical team about prostoglandins and they said no as did DR Grattan . I am hoping the new boss will say yes as a BMB without as positive level feels premature but I amy be that person the American doctors describe on the videos .So I am a bit stuck as I can't afford the private route here as i am on benifits and disablilty . i have been saving but I now have to move house as my landlord is not allowing the adaptaions I need to use this property xxxxxxxxx

Roll on may 31st and my next appointment

How did I freak you out ? I can be a bit too honest sometimes and direct . i don't always do this . I am more so if I am feeling rough

hugs
Josie

Title: Re: More good news!
Post by Lisa on 03/26/11 at 05:29:07

Ah, niggling - makes sense now! haha!! YEP I DO THAT TOO!! I had to take an extra ranitidine today, yesterday, all week in fact, just to settle things down. I must be needing higher levels to compensate for the increased physical activity.

Freak me out? Shesh, you NEED to ask Jose? Yikes, you get into trouble like Ramona does where everything is exploding all over the place! You remind me of a 10 times worse reaction than I had last Tuesday!! YIKES!!!!!

So, yes, you freak me out baby and I can't imagine having to deal with what you do. My explosions don't get like those and seem mild in comparrison.

Keep on pushing. I think it's valid your asking for the prostaglandins exam, Jose, cause there are reported cases of where the patient had no histamine release but only prostaglandin release. And Manuella is one of these.

Maybe you need to give one of those doctors a copy of Dr. Butterfield's articles - then perhaps they will understand the reason for your wanting the prostaglandins testing.

Title: Re: More good news!
Post by Josie on 03/26/11 at 07:47:31

Hi Lisa ;-)

Thanks , i will . On medscape I assume ? There take was it won't add anything to my case .

Yeah , I scare myself sometimes with the biggies as I call them . In the moment I am not emotional , except a feeling of doom with really big ones , that hits about a week after if I have been really ill . I DO NOT faff about though i am EPI PEN and hospital .

It is this expereice that makes me pro Epi Pen . It works and it holds me until I have paramedics and hospital . For newer members there are certian conditions which should be excluded which mimic masto / mast cell activation , that are dangerous to use Epi Pens with . I have had those excluded . All medications have to be considered on a risk / benifit level and fro me the benifits . need for adrenaline ( epi pen ) is larger than the risks but I am aware of the risks and look after myself .

I was very frustrated in the stage that I thought I was avoiding avoiding avoiding and I was still in ED every 3 weeks . I then learnt I wasn't avoiding as well as I could be ( stuff i didn't know ) and i had other triggers .

many hugs

Josie

Title: Re: More good news!
Post by Joan on 03/26/11 at 11:28:51

Hi Josie,

I can't help but wonder if you're not on enough daily meds, since you're having at least "niggling" symptoms pretty regularly. Might be at least worth talking over with your allergist or other doc and see if something can be added. If you are in a longer-term or more intense flare, sometimes they'll give you a 3-7 day burst of prednisolone to cool things off, especially if you're having clusters of serious anaphylaxis.

Hope you feel better soon and get some real answers as to what's causing these problems.

Title: Re: More good news!
Post by Josie on 03/26/11 at 12:05:07

Hi Joan ,

Thank you :-) i have doubled my ranitidine and I spoke to my GP thursday . He has doubled my Hydoxizine to 25mg twice a day . This is helping . I have not flushed the last 2 evenings .

He wants the immunologists decision , which is the 31st of may . i want to get there sooner , but I am waiting on recordings of my 911 calls (999 here ) and paramedic paperwork as it conclusely proves my anaphylaxis . Untill they have this they are not doing any more . Even my new rash didn't prompt my GP to push things forward .

When the stuff arives I will hassle the secetery , with the intention of a closer appoint ment . I will also email him a copy so he is aware of my risk level ;-(

So I need to get to then .

Do you have any ideas ? As I need to reduce my triggers as much as possible . I am on the low histamine diet and have no sulphites in my meds or wash products .

Thank you ;-)
Josie

Title: Re: More good news!
Post by Joan on 03/26/11 at 18:36:53

Hi Josie, Glad your doctor is trying to help you get under control. Ask him/her what the largest safe dosages are of what you're prescribed. It's much higher than you might think. Can't remember if you take Ketotifen or gastrocrom.

Stress can be a key factor, so do what you can to lower your stress level. Resting can help stabilize things, too, so take a nap or rest during the day if there's an opportunity. Some people find prayer or meditation relieves stress. There are no right or wrong ways here. If you have something that makes you feel more calm and relaxed, do it. If writing and reading on the forum raises your anxiety level, stay off for a day or two.

Can't remember whether you were in the conversation about fragrances. Eliminating those from all personal, bath, laundry, cleaning, and hair products can make a big difference in symptoms. Later, when you are diagnosed and feeling stable you can test to see whether you can tolerate any natural scents. The artificial ones, like they put into all sorts of products, give off VOC's (volatile organic compounds) that can cause flushing reactions, fainting, seizures and more, and not only in people with mast cell diseases.

You might want to check your house for indoor allergens that might act as triggers for you. That would include looking for signs of mold, such as in the bathroom tub and shower or on the ceiling, in the kitchen or laundry area, around windows, etc. If there have been roof leaks, that can cause mold problem. If there is a dirt basement or crawlspace under the house, it should be covered with plastic sheeting. It's spring, so if you react to any pollens, it might be best to stay indoors before 10:00 a.m. and after 6:00 p.m., when pollen counts are highest.

If you have pollen allergies, they can cross-react with foods, for example, some people react to melons during the ragweed season. Also, some foods can be triggers without being true allergies. If you keep a daily food diary along with your daily level of symptoms, you might be able to make a connection. Some low histamine foods could be a trigger for you. Highly acidic foods might be a problem.

If you have dust allergies, you will want to put allergy barrier encasings on your pillows, mattress, and box springs and wear a dust mask when dusting or vacuuming your house.

Remember, sometimes it's just not possible to know what causes a flare of symptoms, and all we can do is increase meds until they go away.

You're on a good track toward getting a true diagnosis. Hope it comes soon.