Blood vessels instability- anyone seen a vascular specialist

[Froggirl]

I had my first visit to a dermalogist yesterday to see if anything could be done to treat my facial flushing. He said that most of my flushing is due to systemic blood vessels instability (as of the last couple of months I get bad facial flushing, migranes, Raynaurds, Heart Arrhytmia, as well as generalised red blochyness on my arms that comes and goes). He suggested that I see a vascular specialist.

I have noticed that many people on this forum also have other blood vesseles issues like Raynaurds. Has anyone here seen a vascular specialist? If so what was the result? Was it worth it?

[sammi]

I havent exactally seen a vascular specialist, but I did get an angiogram done a little while ago, where they actually look at the blood vessels. I get a marble kind of appearance in my arms and legs.. (blue/purple.. and then red when hot) I also have rayunds (sp?) and extremly severe flushing on my face. I got the test done in my arms, it would have been interesting if they had done it in my head though,.. my arms and legs dont bother me at all, just my facial flushing thats really bad. The doctors never told me the results of the angiogram, I guess I have to wait until I go back to my rhumetologist.

[Froggirl]

Hi Sammi

Have you been back to the rhumetologist yet? Lately i have been getting a similar thing on my arms and would love to know what your doctor has said.

I did a quick search and came across Livedo reticularis, i think this is what i am getting on my arms, so looks like it's just another manifestation of my general blood vessel problems. Is this what yours looks like?

http://www.dermnetnz.org/vascular/livedo-vascularis.html

Livedo reticularis refers to a condition in which dilation of capillary blood vessels and stagnation of blood within these vessels causes mottled discolouration of the skin. It is described as being reticular (net-like) cyanotic (reddish blue discolouration) cutaneous discolouration surrounding pale central areas. It occurs mostly on the legs, arms and trunk and is more pronounced in cold weather.

Idiopathic livedo reticularis (i.e. cause unknown) occurs most commonly in young and middle-aged females, particularly during winter. Mottling occurs first only on exposure to cold but can become permanent

[sammi]

hmm.. mine looks like the marbley appearance on the persons legs, the top one (Cutis marmorata) , its a little more purpley/blue then that, it only happens when my arms/legs are cold. .. but when my skin gets hot.. like during a shower.. it turns more solid red. My rumetoligist didnt really say anything, except that she was going to send me to a circulation specialist, im still waiting for them to set up an appointment, so i dont know when that'll be. Ill let you know if i find out anything after i go

[Froggirl]

Your symptoms sound exactly the same as mine! At first i was only getting redness on my arms, legs and chest when I showered. Now it's starting to appear at other times and the redness is spreading. I really didn't notice it for a long time, i've been trying to avoid all mirrors.

It's the facial flushing that it driving me mad too, It just seems to be getting worse.

Let me know if you ever get any answers.

[jennfran]

I was going through old posts and found this..I have this also on my legs. I have a marble look. It goes away when I am laying down and am warm but at first thought it was because I was cold but then it was happening even when warm and I was standing...Jenn

[Froggirl]

It is interesting that so many of us have circulation problems too, although i guess that makes sense in a way, given that it's all about blood vessels.

I'm still trying to find answers to this, mine gotten much much worse and my legs and arms and chest flush terribly now and even when they are not flushed they are kind of purple and marbled and i'm getting covered all over in tiny purple veins. Thank god the laser treatment means my face is much better than my body, and that i have no vanity left at this point!!!

I've been tested for so many horrible diseases by now that having funny looking skin doesn't seem to bad. :wink:

Sammi did you ever get any answers? I'm still waiting to see an endocronologist.....

[Melissa W]

I know what you mean. I have so many circulatory problems and weird things happening that after all those tests that the doctors ran rosacea suddenly doesn't seem as awful as it did. The potential of having a scary (and possibly fatal) disease took away the horrible feeling I had when I was first diagnosed with rosacea and i realized how it was going to affect my life.

It still is stressful and takes its toll but I have a whole new perspective and appreciation for all the things that go right with my health. As long as it doesn't kill me I can deal with any issue. I have alot of living I want to do and I love my life and am not going to let rosacea beat me down! But I reserve the right to bitch and moan about it when I need to!

All the best,
Melissa

[Froggirl]

lol, Melissa, that's exactly how i feel too!

[sammi]

It is interesting that so many of us have circulation problems too, although i guess that makes sense in a way, given that it's all about blood vessels.

I'm still trying to find answers to this, mine gotten much much worse and my legs and arms and chest flush terribly now and even when they are not flushed they are kind of purple and marbled and i'm getting covered all over in tiny purple veins. Thank god the laser treatment means my face is much better than my body, and that i have no vanity left at this point!!!

I've been tested for so many horrible diseases by now that having funny looking skin doesn't seem to bad. :wink:

Sammi did you ever get any answers? I'm still waiting to see an endocronologist.....

im actually waiting to see an endocronoligist as well, ... i have a lot of stuff going on that is 100% related to the flushing/burning on my face ... i am finally starting to get some idea of what is going on with my entire body ... but i really need to wait to get into the endro to get any answers (my gp is completey usless, as well as all the other rhumetoloists ive been seeing over the last year) my doctors kept insisting that it was autoimmune.. but now im almost positive its related somehow to my hormones
i'll keep you updated when i find out anything for sure... ive been waiting FOREVER to get into the endro .. hoefully i'll have some answers soon

[jennfran]

Froggirl,

I also have a marlbed look to my legs(thighs). I was thinking I have some kind of vascular problem. I have alot more symptoms but wont bore everyone but am looking at livedo reticularis which has been mentioned on here. I go to my Dr. again I am requesting a visit to a vascular specialist...Jenn

[Froggirl]

According to my doctor an endocronologist is the one to see. Apparently vascular specialists deal with the large blood vessels rather than the capillaries, which is what our symptoms involve.

[RachelRose]

I called every vascular specialist in all the clinics in Portland and they'd never heard of anyone calling them for rosacea. Mystified them entirely. They said vascular specialists are typically for heart problems.

[Froggirl]

Back when i just had facial flushing the first dermatologist i saw made an off hand comment about if i had seen a vascular specialist but after i started this thread i found, like you did, that they deal with the large blood vessels and are mainly concerned with heart issues. Whereas flushing involves the small vessels and capillaries, which apparently an endocronologist know the most about. Most endocronologists do deal mostly with diabeties so it took my doctor a very long time to find one to refer me to that may have any ideas about my facial/chest/hand/feet/knee flushing.

Which is why i've had to wait 5 months for an appointment :shock: but the wait is nearly over now, only one week to go....
I'm not really sure though if they would be much help for just rosacea, I know they would be good at making sure that any facial flushing isn't a symptom of any other diseases or from any medication etc. Same as an allergist is good to rule out allergies as a cause of facial flushing.

[Melissa W]

Hi Froggirl,

I want to wish you good luck with your visit with the endocrinologist next week!!
I hope he can give you some answers and help you find relief!

Best wishes,
Melissa

[Froggirl]

Thanks. It means a lot to be able to come here and vent because it seems like getting an answers is going to be a long process.

Had my endocronologist's appointment today.... but still have no answers, I have to have a whole lot of tests and go back in two months.

He did give me a list of things that could explain my symptoms to take away, just so i can get myself totally freaked out while i'm waiting! :wink:

The list of things which could explain my flushing (as well as wheezing and GI issues) were:

mastocytosis
carcinoid syndrome
hyperthyroidism
abnormalitity of bone marrow/lymph nodes
wheat allergy -coeliac disease

It's not exactly a reassuring list. I've already been tested for everything on the list except, the bone marrow/lymph node issues, but apparently things like carcinoid can come and go. So now i just need to try very hard not to worry until i get the results.....and to stop myself from googling any of these conditons!!

[Melissa W]

Hi Kate,
I'm glad you finally had your Dr's visit and now just hang in there! Try NOT to google all the possible conditions (easier said than done, I know!) and keep good thoughts!

I'm sending you all my good vibes and positive thoughts and best wishes!!

Take care,
Melissa

[willa]

Try NOT to google all the possible conditions (easier said than done, I know!)

I read this and had to giggle, Melissa. I know just what you mean about the urge to google. It never calms me! My husband made me promise not to google (or webmd.com) anything after sunset - somehow the night just makes the demons bigger.

Good luck, Kate, with all the muck and mire you're sorting through. You're an inspiration to this newbie.

- willa

[Froggirl]

Try NOT to google all the possible conditions (easier said than done, I know!)

Too late! Lol, i think i'm a google addict! :wink: And now i'm wondering what on the webmd.com site!

I wish now i didn't know what i know about these conditions, it's making it hard not to think about it. So as a coping mechanism i'm going for mastocytosis, because it's not so bad and would explain everything and it stops me thinking about the life expectancy a diagnosis of carsnoid sydrome would mean! And in an odd way it's helping me stay postive.