What is this?

[skooch]

Desperately seeking help. I have unidentifyable black stuff on and in my skin. U can't see it properly with a naked eye so small but disgusting iv had it about a year now and in and out my doctors with no satisfaction they told me scabies. Not. Mites. Not. dry skin. Now eczema they don't know wot it is and now they think I'm crazy. My whole body is covered. I have to use lotions n creams to wipe it off with a tissue. Soap n water does not move it even with a nail brush. just lotion and a tissue im at my wits end. If u don't wipe Yr skin they take over and eat away at u iv been in some mess with and still the doctor saying its my imagination. Yet they can see it all so. Someone please help me.

[gillianTS]

Hi skooch

Not being able to see your skin I wondered if it might be the rare Morgellons, this is a very poorly understood problem. I found a link with many pictures which may or may not relate to what you are experiencing, the website has been created and offers more information. Much is written about this condition:

morgellonsdiseaseawareness....

[skooch in reply to gillianTS]

hi gillian,yes im familiar with this morgellons,i didnt want to mention it because i told the doctor this and he wouldnt have none of it,he said it didnt exist and its all in the mind,hence they want me to see a mental health doctor now,they said i have a very powerfull mind and in the same sentence would i be willing to see mental health,im so glad u replied to me,thankyou

[gillianTS in reply to skooch]

I have read quite a bit now about this condition now and I find it very alarming that the facts are placed in front of these experts the world over. I do not believe this is a mental health issue but I can see how it will turn into such a condition when people simply do not want to listen. Too many people have shown whatever this is coming out of their bodies is fact, I see some areas of medicine believe that the condition is real and others that do not.

Let the GP's refer you and at each corner when these consultants are scratching their heads then ask them where are you going to refer me now, do not give up. Please request copies of any tests and correspondence from consultants and your GP.

Fighting your corner is all you can do. Having had my own battles since my mid teens when nobody would listen and then eventually a consultant just 5 years ago told me she believed that I had this particular condition and it was like a light bulb moment, however this condition not gone away just because it is treated as best it can be, the flare ups are still there but knowing what I know now has helped me fight my own corner and get help instead of suffering, the disease is rare and hard to prove even though symptoms show, being made to feel that it was all me is no longer the case and my GP's have had to learn more but still don't understand things so I just ask to be referred now. Every time I go to hospital I end up having to explain it's amazing these people do not read patients notes first and then do a bit of reading...

One thing I did when I got in front of the consultant who diagnosed my condition 5 years ago was to ask who was going to manage my condition going forwards, rheumatology, dermatology, gastroenterology, because my GP's had no idea or experience. Thankfully they agreed, up until the virus I had been seeing a consultant every 3 months.

Get in contact with the groups who also suffer with this condition, get yourself in the know about any test, treatment, dna tests etc and be armed with this when you eventually see dermatology. You could even contact dermatologist who are online and make sure you take more pictures, record a diary, you never no one of them might be more than happy to help.

I was in contact with a specialist in Europe after discovering my B12 was way too high, over here in the UK hospital I attend it was like that's ok, I asked why they have a reference range and my results are well outside, what does that mean, they could not tell me... I research and researched and discovered it could be a early indicator of something serious and it was recommended to have CT scans of chest, pelvis and abdomen, having had this done it showed up 2 lung nodules, one is now being monitored, the other is smaller. I feel pretty sure had I not taken my research to my consultant and asked her to please read it carefully and consider what had been written she would have agreed to the CT scans and blood tests. The specialist in Europe was even willing to speak to my consultant. Anyway the fact she went ahead and did every test that was recommended helped me and it has had to help them understand this is not normal...

Sorry for the long reply, I hope you get my thoughts on do not be put off by anyone.

Take care.

[skooch in reply to gillianTS]

Thank you so very much I understand everything Yr saying. Suffering in silence is a killer as I feel so alone right now. Il let u know of any progress iv made. And once again thakyou

[gillianTS in reply to skooch]

Have you seen the facebook group, might be worth joining to gain information and an insight to how others are dealing with the situation, you might also discover someone in your area, even a specialist who has experience of the conditions that you could suggest being referred to:

m.facebook.com/Morgellonsaw...

This is also a very long article which might provide you with some helpful information and insights:

ncbi.nlm.nih.gov/pmc/articl...

The other thing I would also consider is collecting these fibres in sterile bottles and keeping some in your home in normal temperatures and others in your fridge and others in your freezer, do not forget to date them, just keep collecting them over a period of time right up to your appointment. You might even notice some changes in these so its also important to photograph and again date with same as samples. Evidence is key in these situations, take these with you to your appointment. When you do get your appointment with dermatology if you get any negative reaction please ask for a 2nd opinion there and then, I know someone who has literally just done this with a dermatologist and the person happily got her boss to come in and give her opinion too.

[Kristicats]

I’d say you need to be referred to a dermatologist so they can look under their microscope to diagnose.

[skooch in reply to Kristicats]

thanks for your reply,they keep saying there going to refer me but instead they sent them pictures and they sent back it was eczema,even i know its not that,iv had scrapings put under a microscope and they said it was nothing,[still at a loss]

[Kristicats in reply to skooch]

How strange and annoying for you!

[Alberta56]

I'm glad Gillian was able to give you such helpful advice about this very rare condition. It is awful when you know there is something wrong with you and you can't get an answer. Best of luck in pursuing an answer.