Fearing Collagen Diseases

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kschoenhaut

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Hello,For the last 1 year i've been fearing various things because my symptoms ramped up way beyond twitches, it's been a rollercoaster ride, after i did extensive testing to exclude the most common causes i remained with a group of disorders i would never even in my wildest nightmares thought i would get, these are the collagen diseaes, i didn't think it was them because it affects women wit a ratio of between 4:1 to 9:1 overall, so i didn't even pursue that path, my esr was low, crp the same, no indications for further testing. Then in february i went to myself to get tested for antinuclear antibodies just to make sure. It was negative. But after 4 months it turned positive, in the mean time i started getting some brown patches of hardened skin on my knucles on the right hand, actually 2 fingers but i didn't think much of it. A weeks ago i started having small splinter-like bleeds under some of my nails like this (these are also common in the general population) and small dots of blood on my nailfold like this girl are uncommon in healthy people)I have scoured studies in order to find an explanation for my facial issues that persist (because no doctors gave me one) and i found a link between collagen diseases and the facial manifestations in particular, apparently trigeminal involvement alone without symptoms in other areas of the body are very specific for certain collagen disorders, those marks on my nails also. I don't want to scare you, all i want to do is to urge you to talk about these issues with your rheumatologist if they ever appear, they might signal the debut of a group of potentially debilitating conditions. I know most members don't have my particular symptoms, but if you do, especially the facial neuropathy and the fingernail changes contact me, maybe we can help each other somehow.
 
Hey, breathe deep for one moment...OK, you told me U are hypermobile, there is a very clear definition to that by the brighton score. Then-yes-there's something wrong with your collagen. It is hederitary but benign as well as BFS. Unfortunately there are lots of skin-things going along with this . But HMS is not automimmune, although there are sometimes things going along that might appear like it. E.g. I had signs of raynauds for some time, it passed away. Ma ANAs were positive once, negative next time, my docs said that and that most people will show positive ANAs several times in their lives when tested for it. If you feel so anxiuos about it, then get yout ANAs tested over again, If they stay positive for a long period of time, there might be some autoimmune stuff going on. I have to go regularly to a spezialist where I meet a lot of people with autoimmune diseases , as many of them affect blood coagulation. All of them get along very well and I was never really afraid of having it as I know all of these are quite fine.
 
I don't have those spots on all the fingers, only 2 but they are very similar, i don't have any weakness either, i will check with a dermatologist and my rheumatologist but i think it's pointless anyways, only *beep* awaits me whether i find the cause or not. I'm not hypermobile. The disease that causes facial neuropathy is either scleroderma or sjogren's. They kinda mess you up, i wouldn't call any of them benign, especially scleroderma. I really freaked out when i saw those hemoragges, i've been paying attention to my nailfolds for a few months since i learned of the association and voila, there they are, i also think that i have raynaud's although in my condition i'm not very objective, anyways whatever it is it's arlready taking its toll on me with the face stuff, the tingling reached my sinuses, inner ear and back of throat, i don't believe it's benign or related to bfs, really. I will have to get an answer from a doctor but most of them have been pricks until now. God i wish so much i could have done something to prevent this, it really devastated my life. The true culprits in all this is the testing industry, you would think that after a few centuries of good documentation on collagen disorders they would have good testing, no, for scleroderma the average is 4 years and sjogren's can take up to 12, because the ANA is not diagnostic that's a lot of "it's all in my head", then they go from you have nothing to we can do nothing. Cheers to the medical establishment.
 
Just for giggles I would like to see a list of all the diseases you think you have. Anxiety and google have really got you in a mess, Have you talked to your doctor about anxiety meds? Because BFS seems to be the only thing you should be obsessing about. Next time you get on google or what ever search engine you use, type in BFS and do some studying on that syndrome, I bet you will find alot of people just like you......Good Luck in your searching.....
 
I hope you're right randy, but i was looking for these changes, which makes the symptoms less likely to be just random, if it's anxiety i've completly lost contact with this reality, as i don't see how anixety can change blood tests and create splinter hemorrhages.
 
Don't know about that, i read some studies where spouses of people with autoimmune disease were tested for ANAs and they were positive in a greater percentage than the normal population, which points to an environmental trigger to autoimmunity even in people that are not predisposed. What might happen is the infection of a neurotropic virus or bacteria or fungus or whatever, that causes twitches in a person and chronic immune response/dysfunction in another that's more predisposed, but that's speculation. I am in doubt because if this virus or whatever was known to create symptoms this dramatic like in certain people it would have garnered some attention by now unless we the people that got it would be called mad or neurotic... I mean what the hell something that causes chronic paresthesias, spasms, headaches, pain, tremors even if mild is worth checking.
 
Were the bleeds only on 2-3 fingers ? I have had both of those types of bleeding quite a few times from activities, but usually only on two fingers at a time, total.Also: stop drinking coffee. some people are hypersensitive to its effects and it has pesticides and other neurotoxins (I still drink it though :confused: )
 
Eh screw it, there's no point in predicting doom and gloom, i'll just keep you posted if anything happens, i got the bleeds on 2 fingers at different times.
 

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