Hello,

I was just wondering if any of you ever notice problems with swelling around your ankles?  I am getting this lately.  It is pretty mild, not very noticable, but it hurts some times.  I am going to the doc tomorrow so will ask about it.

Just wondering if it is just from standing too much, masto, or maybe something else going on?

Hi J bean ,

The same applies to me . I have been worked up for all the other causes .

The masto specialist here has diagnosed angiodeama now . So that is why it is happening for me . The cause of the angiodeama has not been identified for me . All the causes have been tested for .

Mine has also improved with Singulair , i am not on Gastrocrom yet . It will go down overnight . When it is particularly bad it won't go right down . I also have swelling in my pelvis and down below so fluid from my legs sometimes has no where to go as my lymph nodes in my pelvis are already full .  In this case it can appear to develop overnight . This can be the case , but is more often fluid moving down from my thighs .  Exercise makes mine worse . Putting my feet up after exercising will not stop it continuing to swell .

Heather is right it can be from vasodilation ( opening up ) of blood vessels .  In my case it is also from fluid moving out of my blood into my tissues due to them letting out proteins that they normally can not . The vessels are porous . Histamine and compliment ( 3a 4a and 5a ) anaphlatoxins do this .

After a large reaction I crave protein , like slabs of meat. Is there any clear basis in biology for this Heather ?? My albumin is stable . As far as I am aware my corrected protein is as well . I also crave vitamin C.

Your swelling sounds enough for these factors to be at play as it is enough to press on your nerves . But all the causes need looking at before swelling from mast cells can be seen a a serious option .

many hugs

Josie

Hi Ruth ,

yes , I do . I get tingling and itching in any area in which I am swelling or about to swell . This fits with my angiodeama .

When I am having a severe reaction the itching is intense and impossible to leave alone . The swelling follows quickly . This is not my daily symptom. if I get itching inside my throat where I can not get to it, by Adams apple . Then I know it is a biggie . I don't know if your son gets this ??

Josie

Thanks Josie, I figured the itching goes along with histamine and he does have angioedema, just trying to work my way through understanding all the bits and pieces of his symptoms. And every so often he reveals new bits of information, I think he is just realising that some of what he feels is not just normal and not everyone experiences that.  Another recent one he dropped into a conversation was tinnitus. Anyway, as for the swelling, as far as I know he has never experienced any swelling in his mouth or throat, for which I am grateful, but he knows to be on the lookout for that.

Ruth

I have swollen ankles , sometimes as much as up to my knees. I think it has to do with my chronic UTIs and IC... I try to be careful of sitting with my knees bent , sit with legs out not bended.  I also notice that wearing some tight clothes makes it worse---IE my little ankle footies to protect my feet. If it gets really bad (like when I have  an infection) then I take lasix 40 mg with 1 potassium usually about 5 days and its better. One of my BP meds is HCTZ that has a water pill action with it, that helps. Hope you feel better soon Jillibean
love ya
Ramona

I have bursitis too in my shoulder and I have masto too.
HMMMMM.

The swelling I get is very hard, so one of my doctors told me it isn't swelling, it is the way my feet are shaped! In other words, it is supposed to be because I am fat! I think she only expects to see pitting edema. But it goes up and down, even in a day. Sometimes I can't put my shoes on, and I have shoes that are different sizes, so that when I can't wear my regular ones, I can still wear my "fat" ones, just like "fat" jeans. In the morning my feet are more often normal, and look like what I think of as "my" feet. It doesn't seem like fat goes up and down in a day.

Is this different, when the swelling is hard? It hurts quite a bit, too. I noticed Josie mentioned C4a up above. I have VERY high C4a levels, don't know the histamine levels yet.

And I don't have bursitis, but I have Baker's cysts behind my knees, again a hard swelling behind the knees, but this doesn't go down so quickly. I have been on low dose Minocycline for long periods, because it seems to control the pain and swelling in my knees, but not in my feet.

I also frequently get bursitis in my arms from any type of repeated activity. It is almost ridiculous how easily the joints get inflamed.

And tinnitus, which comes and goes depending on how badly I am doing. Ruth, things like tinnitus can kind of creep up on you, so that all of the sudden you notice it is really loud, other times it is just a very quite background sound, and I have to really listen for it. So your son may have an even harder time recognizing symptoms that come on slowly.

It is sounding more and more like Singular and Gastrocrom would be good things for me to trial.