Went to the hospital for a skin check up due to this rare pulmonary disease they are investigating.
There were 2 dermatologists, the Consultant and a geneticist. It was daunting as I had to strip from top to bottom so they switched off the light and passed a Wood light all over me searching for white pigmentation, I didn't have any so I was cleared of that part of the disease, that was a relief.
Regarding the purpura stains due to steroids that come and go on my arms and the thinning of the skinning, he said it was irreversible. I thought he would give me a prescription for some creams no such luck he told me to carry on with Cicalfate from Avene, which I found was the best skin repair cream for me.
Last scan to dismiss further horror stories is supposed to be a brain scan so wiil see if and when they send me for that one...
Once again your post has sent me researching symptoms that I hadn't heard of before;0) I'd also never heard of a Wood light examination... Fascinating from a medical point of view, but not so great when it's happening to you;0() I hope that you get to enjoy the bits inbetween? Good luck with the follow up scan too. Take care....
Yes, it's a white light, like ultra violet type I suppose. I'm just waiting for the file to be completed so when I see the Guy😃 on June 3rd I get my answers!! I want to put a name on whatever this is then I can take it in and relax.😎
Hope you are well and enjoying life and the British summer😉
Like Gino I have never heard of some of the conditions they suspect you have. It must come as a real shock when you investigate things yourself .... So what's happening now- do you have LAM as well as as the tuberous sclerosis disease?? One on its own would be more than enough to contend with Thinking of you xx
Hi Flossie, thank you for your kind message. I will know for sure on June 3rd. It seems one includes the other if I have understood correctly, LAM is enough for me...tuberous sclerosis attacks the brain, I would be really scared I think, I can cope with difficult lungs but losing your brain functions, dear me..
I find all the info on the Orphanet website well up to standards on all those orphan diseases if not how would I understand my doctor reports, he is good enough to explain I must say but it's like a jargon you know.
So far my specialist diagnosed probable pulmonary LAM, which means that cysts obstruct your airways and cause shortness of breath. It can be there is no asthma. They haven't found that out but the result is the same really plus the risk of pneumothorax. So I have to think about it you know like not flying, not making a violent effort like not lifting Dad who is elderly and has just broken his collar bone, coming back home next week. Now the meds are the same except if and when it gets more pronounced they have experimental drugs which help the disease to recede but I am not at that stage I may never be, it is very much an individual thing.
So I feel lucky, yes I do, when I talk with other patients, I certainly do and it helps to live your life.
Always a pleasure catching up with you although your news isn't great. I wish there was more I could do to help, but I am certainly going to have a look on the website you mentioned so I can be a bit more informed about things. I don't suppose there's a forum for folks with LAM you might find helpful in addition to this one?? Here for you anyway even though I certainly know don't have a baldy about your conditions.... Ttfn and hugs from London xx
Yes there is a LAM forum in Nottingham. A lady called Jan Johnson takes care of it. She is the one who gave me the name of the Consultant in Switzerland. On June 3rd when I meet with him they will officially register me as a LAM patient. It is a global register so they keep track of the likes of us. Then I will be able to join.
People here have been lovely and understanding. It feels good to exchange.
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Thinking of you xx
if not how would I understand my doctor reports, he is good enough to explain I must say but it's like a jargon you know.
Here for you anyway even though I certainly know don't have a baldy about your conditions.... Ttfn and hugs from London 
xx
New confused and fed-up!
Asthma flare up any advice?
upping steroid inhaler 
Respiratory Consultant wants me to come off asthma meds!
