Infuriating doctor! Rant.

[Mistica]

Seeing I have most likely become resistant to the vasculight IPL, I decided to consult another doctor who has a Palomar. I didn't actually want treatment with it, but wanted to ask her if she had ever had any patients who had previously responded to one form of IPL and then stopped. Only to go on to respond favourably to a different type?
I didn't get anywhere at all, and it was blatantly obvious from the start, this doctor only had an extremely basic understanding of rosacea. Not to mention a short attention span.

I tried to explain my case to her and she kept interrupting me and was more interested in the fact the muscles in my neck were asymetrical. I tried to get her back on track, telling her my previous experience with IPL had been excellent, and I had achieved remission which lasted several years. She told me I was wrong! I told her I had since had one treatment with the Lumenis One and it made a dent in my flushing, but unfortunately the practitioner had gone to live in Paris. This was ignored.

According to her, IPL never helped me in the past, even though I repeatedly told her that was incorrect. I tried to explain that I sailed downhill when I used topical vitamin A on my face. I said it started with redness and irritation, which became worse, and was then followed by small flushes, which became more intense. She disputed this. Despite the fact, this has been confirmed by two dermatologists. Prior to that I had seen about 4 others. All confirmed rosacea. I went on to speak about the Genesis Laser, and she snapped at me "IPL can't reduce any flushing!".
She obviously didn't know the difference between IPL and a Laser!
I tried to tell her about the methods employed by Dr Crouch and Dr Darm, but she refused to listen.

She went on and on about how rosacea doesn't involve flushing. We are all suffering from a severe neurological problem and Drs Soldo, Darm and Crouch have no clue what they are talking about!!
I wanted to smack her in the head! So did my partner. I took him along as a witness.

I was getting more and more frustrated, surprise, surprise, especially when she patronised me. Patting me on the arm, telling me that I am a very attractive woman and many women would die to have 'skin' like mine. Wrinkle free and the latin looks etc.
Well, I didn't know it was a beauty contest! And besides the fact I look young for my age, how does that help my rosacea?

I should point out here, I had two thick sunblocks on. Firstly, titanium dioxide, then Megan Gales 18% zinc, making me look like a Geisha Girl. I wanted to wash my face, so my skin could be examined properly, but apparently that wasn't necessary.
I started to flush at that point, which could be seen through all the sunblock, and commented how my face felt hot and burning.
I was obviously distressed due to her attitude and she took that as being overly concerned with my skin.
Where upon, she called my GP, and told him this and strongly suggested he send me to a neurologist!
Insisting yet again, that rosacea doesn't include flushing. Additionally, my lack of P&P's ( at the moment), also illustrate my problem isn't rosacea.

My GP, has no clue about rosacea and one day, when he was dismissive of how debilitating it can be, he asked if I had ever seen anyone with bone marrow failure? Well in fact I have, but how does that help my rosacea? I must note, over all, he appears to be a nice chap. Just ill informed.

I don't usually name clinics on here, but this time I am going to.
Anyone in Brisbane thinking of going to a cosmetic skinclinic in Chermside... Don't!
It would be a complete waste of time and money. And if you werent flushing upon entering the building, you certainly would be by the time you left!

PS: I would love to witness her tell Dr Darm etc, they don't know what they are talking about!

[phlika29]

Mistica

It sounds like it was a complete waste of timemad1: However you have the good sense and knowledge to realise this and move onto someone who can help you.

[Peter]

Hello Jenny

Sorry to hear that it was all a frustrating waste of time but unfortunately it happens, so you will just have to put it down to experience. In my quest for an answer to rosacea I met a couple of useless doctors and so called dermatologists who completely wasted my time. To make matters worse they were also extremely arrogant and one suggested that I didn’t have rosacea and was imagining the whole thing. When I returned to her a few weeks later clearly displaying the effects of a major rosacea flare-up on my face she was utterly clueless and just wiped her hands of me and transferred me back to my original doctor.

After this I decided to let nothing stand in my way and adopted the principle that it was my face and contrary to what anybody else thought I wanted the best for it. I then managed to track down a dermatologist who did care and was experienced at treating rosacea and with his help I never looked back.

I’m not sure of the position with dermatologists in Australia but there must be some competent ones there who have a good reputation at treating rosacea? Wouldn’t you be better off with this route rather than Cosmetic Skin Clinics who as you have proved are probably not very knowledgeable about rosacea and more interested in your money? Maybe David Pascoe might know of a good dermatologist in your area although I know Australia is a huge place when compared to the UK?

It might not be in your nature but I found being being assertive and prepared to argue my case got me much further than believing what some of these idiots told me.

Good luck

Peter

[Alba]

Dear Mistica:

I surely do know how you are feeling. I have had similar experiences in the past 9 years or so. Still doesn't make me stop from looking for a good derm. I think I have gone to every good derm here in Miami and still haven't found a derm that knows much about rosacea. At the moment supposively per many doctors I am being seeing by the best dermatalogist in Florida. He tries, at least tries to listen to me and is trying different things on me but no real success. I too wish I could find a good derm that had good knowledge of rosacea even if i have to travel out of Miami, but no real success yet. The search continues...

You just have to continue to try until you find someone with some understanding. Hey if a neuroligist could help I would be so happy. I do think that if a neurologist along with a derm would work together we could actually get some good results even with a specialist in veins. But no such luck of finding this team.

Its just so frustating and so expensive to continue to search for a good doctor, but we have no other choice.

[ERIC THE RED]

I too had 1 Dr say IPL will not help flushing ,just the appearance of blood vessels,
nor do rosacea effect the neck,I beg to differ,He said he can't help me and I left with absolutely nothing to help my situation . The beat goes on.

[drums]

Mistica,
We are all suffering from a severe neurological problem?

It would have been very interesting and a great help to hear what severe neurological problem you were supposed to be suffering from.
I do have neurotransmitters on my current list which I am researching and it would be interesting to see if this painful person could tell you which part of the neurosystem she was actualy referring to.

[Mistica]

Thanks for your support everyone.
I know my posting wasn't helpful really, but you know how it is. Sometimes you just have to rant!

Peter,

If there is one thing rosacea has done for me, that has been to make me more assertive. I learned quickly, if I won't help myself, no one will.
My eye specialist told me that within a week of my being diagnosed. Adding that doctors aren't Gods, no matter if some of them are under that impression.

David Pascoe lives in Perth, which is further away from me, than NZ. I am currently living in Brisbane. Finding a good dermatologist has proven to be extremely difficult. Usually, there is a very long wait, at least 5 months plus, which isn't helpful at all. Consultations, when they finally arrive have been very disappointing.

During the last few days, another lady on the forum announced she was going to be part of a rosacea trial, being run on the Gold Coast. Not far from me. The trial is for topical Ivermectin. It is being overseen by a top notch dermatologist.
I immediately contacted the clinic to see if I might be considered a candidate. I saw it as an opportunity to be examined by a dermatologist who actually has a special interest in rosacea, but unfortunately I was told I wasn't a candidate as I don't have a face full of pustules.
Well to be accurate, I don't have numerous pustules 'at the moment', but that didn't seem to matter. Two weeks ago, I couldn't keep up with them.
I am not a scientist, but with my lay person's knowledge, I feel it would have been useful to run the trial on the flushing/burning rosacea as well, seeing there are reports floating about the world, which seems to show that demodex might not necessarily produce P&P's.

Having been turned down, I asked if it were possible to have a regular consultation with the derm, and yes, it is possible, if I want to put my name on the year plus waiting list.
<sigh>

Still, it will be helpful to us to hear how the Brisbane lady gets along.

Currently, I am about to start Brady's diet.
Over all, my diet is healthy, and I have never really been a cake person, but upon closer examination, I do consume an enormous amount of sugar in the form of soy milk.
There are reports that soy might not be such a great thing either, so it won't hurt me to cut this out for a month.

Addtionally, at some point, I am going to speak to another doctor about RLT. I have seen her before and she is very personable, accepts what I say, and has the sense to admit she doesn't know everything. I know I can order the unit over the internet, but due to my complications I want to discuss it with a doctor first. This doctor uses it a lot, so hopefully I will get somewhere there.

I might try that chinese cream too, as my use of oral antibiotics is worrying. Before that though, I am most likely going to try a similar cream which a pharmacist in Melbourne makes up. He is away until October.

What that nut couldn't seem to understand yesterday, was that flushing aside, I have stopped responding favourably to the vasculight IPL. Even for redness.
The examination I had in Melbourne ( 2 hour flight, plus 40 minute drive), revealed I have very thin skin in areas. It is translucent to a degree as well.
This was caused by the topical A. It exfoliated my skin so excessively, that instead of thickening the dermis, it damaged the epidermis.
I have been told, and I agree, that my easy flushing, even transient flushes caused by movement, is due to the fact, my vessels have less support than ever. And while these are constantly dilating, it opens the flood gates for deeper vessels. I have a lot of inflammation and that just exacerbates everything.
It is a pity that chap went to live in Paris.

I am hoping RLT, can help address this.

What I hate more than anything is the severe nose flushing. It drives me insane.
Dr Darm feels I will need laser for that and I expect he is right.

I simply can't understand how most doctors flatly refuse to improve their knowledge database, even when information is being waved in front of them.

Anyway, thanks for your support, everyone. :)

[rachzon]

Hello again Mistica, I'm sorry that you didn't qualify for the trial. Though I would give anything not to have a face full of pustules at present. I will keep you informed as to whether it gives any results.

It was only during my quest to find a suitable dermatologist that I stumbled on this trial. Before that I found some information on Westside Dermatology Clinic. They have 2 dermatologists there with a special interest in Rosacea. One of them is called Belle Cominos and she also goes to Qld Institute of Dermatology at Greenslopes Hospital. She has an Acne and Rosacea Clinic there. If this trial doesn't work for me and I get no other joy they will be my next stop. I have heard no reviews so for that I can not comment.

Good luck.

[Peter]

Hey Jenny

Thanks for your support everyone.
I know my posting wasn't helpful really, but you know how it is. Sometimes you just have to rant!

Nothing wrong with that - many of us understand where you are coming from and
sympathise.



If there is one thing rosacea has done for me, that has been to make me more assertive. I learned quickly, if I won't help myself, no one will.
My eye specialist told me that within a week of my being diagnosed. Adding that doctors aren't Gods, no matter if some of them are under that impression.


Excellent – I’ll keep my mouth shut on that one then.


David Pascoe lives in Perth, which is further away from me, than NZ. I am currently living in Brisbane. Finding a good dermatologist has proven to be extremely difficult.


I know he does but he is a very helpful guy and might have some suggestions, so worth an e mail IMO



It is being overseen by a top notch dermatologist.

I immediately contacted the clinic to see if I might be considered a candidate. I saw it as an opportunity to be examined by a dermatologist who actually has a special interest in rosacea, but unfortunately I was told I wasn't a candidate as I don't have a face full of pustules.

Having been turned down, I asked if it were possible to have a regular consultation with the derm, and yes, it is possible, if I want to put my name on the year plus waiting list.


“Top notch” and also “cutting edge” are two phrases we have often seen overused in recent years as far as rosacea is concerned but they mean nothing to me and mainly used to make something or someone seem better than it or they really are. If this guy does has a proven track record of treating rosacea then regardless of the wait I would still put your name down for an appointment and if practical say you can take any cancellations at short notice. I had to wait 6 months to see Tony Chu but 12 months does seem excessive although you could always cancel yourself if you find another dermatologist in-between time.


Currently, I am about to start Brady's diet.


Personally I’m not a great advocate of these rosacea diets and feel that unless something is an obvious trigger then why cut it out, especially if it’s a favourite? Dealing with rosacea is bad enough without having to restrict your diet and leaving out items you really enjoy. No doubt someone else will post they followed this diet and it’s the best thing they ever did, so really it’s your call.


Addtionally, at some point, I am going to speak to another doctor about RLT. I have seen her before and she is very personable, accepts what I say, and has the sense to admit she doesn't know everything. I know I can order the unit over the internet, but due to my complications I want to discuss it with a doctor first. This doctor uses it a lot, so hopefully I will get somewhere there.


She sounds good and she actually uses RLT a lot? – interesting. Not sure how far away she is from you but again if practical could you try a few sessions under her supervision first before you invest in a unit?



It is a pity that chap went to live in Paris.


Is he contactable by phone or e mail?




I am hoping RLT, can help address this.


Dunno but can’t see you have anything to lose. If you did get a reaction it would only be temporary and then you will just have to accept that unfortunately it’s another treatment to have to cross off the list. Nothing ventured – nothing gained as we say.



What I hate more than anything is the severe nose flushing. It drives me insane.
Dr Darm feels I will need laser for that and I expect he is right.


Again I don’t have all the answers but I’m not always convinced about lasers to solve this. Have you tried Clonidine or maybe a drug like Mepacrine which might have the ability to calm things down or even switch it off once the drug takes effect? Again this is something you would have to discuss with a dermatologist experienced with using these and other drugs to treat rosacea.


I simply can't understand how most doctors flatly refuse to improve their knowledge database, even when information is being waved in front of them.


I can. Some Doctor’s don’t like patients who have obviously done their homework and feel intimidated that they know more than they do. Maybe it’s a question of their own personal pride and reluctance to accept that they are behind the times.

Good luck anyway.

Peter