Has anyone had skin atrophy on their head and pitting atrophy on legs? Diplopia? Headaches? Etc.

[Teen76]

To all out there just a query while I await for diagnosis. I have an indentation to the back of my head, I had a biopsy that was inconclusive, fat atrophy was noted. Severe pain in shins, they have taken a rather wonderful hue of green which comes and goes, this depends on my weight bearing and occurs when my legs are at their worst. Sorry this is quite long!

My knees have developed strange circular indentations that are small and skin coloured. They looked pitted. Also my legs have areas of slight indentation where there are brown oval circles.

Since 18 I have had genital ulcers that occur off and on, quite painful and were thought to be a reaction to perfumed soap! Hmmmm I think not.

Dipolpia has been permanent for two and a half years. Vertigo, dizziness.....oh the list goes on!

Bechets was mentioned by the dermatologist consultant, who felt this could be what has been causing all these weird symptoms.

Must say I'm at he end of my tether, exhausted and confused. If anyone as any ideas I would love to hear from you.

[billi]

Hi, not sure if it is the sme but here goes. I have suffered BD for 26 years and do at times get very itchy burning scalp which crust and are sticky just as the BD lesions on the skin. Also for the last 5 years had terrific headaches at the back if head and more recently moving to sides and top. Thought these were due to my Sponylitis but now have appt next week with Neurology. So we shall see.

Are you in UK as I would suggest you get a referral to a Centre of Excellence in either London, Liverpool or Birmingham. Hope this helps.

Hugs Billi

[Teen76 in reply to billi]

Thanks for the reply. The head pain sounds very similar, it can be quite crippling. My scalp doesn't have many symptoms apart from the skin atrophy, which is quite painful and sensitive to temperature. These autoimmune diseases are so varied and at times make you think you are crazy!!!!

Good luck with the neuro, I hope they can be of some help. I am in england and will need to seek further help and look to those that specialise in these conditions because so far I am not getting any answers and I sure as hell aren't feeling any better.

Don't worry about your spelling brain fog has the same effect on me, can just about remember my name lol.

[billi]

sorry about spelling mistakes but not myself today.......lol lol

Billi

[wendya432]

I get ulcers on my head, not sure if there is atrophy or not since I can't see them and I havne't had them biopsied. But I do have a nice one on my forehead right now that is pretty pitted. Hard to hide that one!

I am having diplopia, and we can't quite figure out why. Ophalmologist thinks it's due to a muscle issue I have in one eye. But my new symptoms are with the other eye and I've not had diplopia prior to this. And it came along with other neurological symptoms. So not sure what is going on. They have said it is not MS. So I'm wondering if it is NeuroBehcet's.

Anyway, just wanted to add my experiences. Although I'm not diagnosed with behcet's yet. I do have all the symptoms and we are slowly ruling out everything else.

[Teen76 in reply to wendya432]

Sounds horrid!!!! Getting a diagnosis with any autoimmune disease is a nightmare! You sound as if you are going through the motions as am I. Bechet's is the one that is ringing the bells rather loudly. MS was ruled out for me also, I'd just like to know what I'm dealing with and to get a little help.

The double vision is awful, it is constant and has turned my life upside down. Moorfields hosp have said I have binocular and monocular vision/diplopia, which is unusual, also the nerves at the back of my eyes are too thin. Go figure!!!! Also I have a six nerve palsy which you may have also, which causes the ghosting and double vision.

Thanks for sharing your symptoms.