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I suffer with extremely painful calcium deposits that break through my skin. I am desperately searching for someone that can give me knowledge of what to do. They are too large for surgery, not to mention I have taken that route and can no longer do that because of size of calcium. Is there anyone that has this same problem? Is there anyone that has gotten relief? I'm willing to try anything at this point.
Surgery Weakness Pain Depression Spinal stenosis Dermatomyositis Kidney stones
My name Is Ashley and I have Dermatomyositis and calcinosis. I have the Calcinosis really bad. Mine is around my pelvis area bad and I have one big bone around mine pelvis area. In my back I have one that has broke the skin and I thought the calcium depostis it self was painful but now I have one that broke the skin and it hurts bad. It is starting in my arm now. The only relief I've ever gotten is pain medicine but it doesn't help with the calcium alot or really at all. So that answer's one of your questions and as far as my Dr's tell me here where I'm from there is nothing they can do either. If they do surgery then the calcium might come back so thats not an opition.They want even try to cut the calcium deposit out that broke the skin. The only other option I was told about was radition and they want try it on me because I'm so young I'm 24 by the way and I was dignosed at 15 I'm about to run out of room so I'm going to give you my e-mail adress so maybe me & you can research 2-gether and we can talk and tell each other or updates from the Dr. or just be friends because no one relates with us if you know what I mean not many people have it. I have 1 ? for u Did your Dr. tell u if they can't stop the calcium it will eventally go into you organs and harden them and then they will start shutting down and kill you? They told me at that at my last visit. please write back I feel hopeless. And now I no there is someone out there that can relate with me. Please tell me a little about yourself too. I would like to know more about u. By the way i'm from McComb , Mississippi. Thank You and please respond back ASAP. Hope things will work out for you
Ashley
Hello Holli:...I am 60 yrs old and have had this Dermatomyositis three yrs now....I have heard about this calcium condition....what are the early symtoms.....as I have much pain in my right thumb and knobby..extreme pain in hips and pelvis....I have not discussed this with my Dr. yet as I go again in March...I also have spinal stenosis and cannot stand up straight for any length of time only with a walker.....I have compassion for you and Ashley...as you are both so young!!!....I pray your Dr. can help you both.....God can be your strength and hope....and give you peace while you wait on an answer.....Sincerely....Neesie
Please give me your phone number thru my e-mail falkon28@comcast.net. I would much rather talk to you than type but I realize that others can read this and it could possibly help them so I will do my best to keep in touch here as well. I don't remember all of what you asked but I'll try to cover as much as I can. No, they didn't tell me that the calcifications could get into my organs shut them down and kill me.. They pretty much tell me they have no clue. I basically have to do all of the research myself, take it to the doctors and they usually do what I ask cause they are clueless. I recently got so stressed out that I began losing strength (as I have been in remission for approx 10 yrs) I am very weak at this point but I can still walk so I'm good. As for my calcium deposits, I've tried surgery and that worked in the beginning and yes they can come back in the scar tissue but it hasn't been too bad in those areas yet. My calcium is of course mainly in the joints when they x-ray me they ask if I'm wearing lead underwear - I dont forwsrn them cause I find that question very funny. Pelvic girdle and lower back are over run with plates of it. Mine began breaking thru the skin about 7 yrs ago and steadily have gotten worse and your right, its painful. (Ask for a pain management doctor, I went and they put in a pain pump... Helps a lot. I still have to take some PO pain meds but not near as much as I was taking.) Anyway, my calcium is really breaking thru and draing in my left outside thigh region lower back, and right hip. The leg is the worst of it but the lower back is the worst painwise.. I found an article on a medicine called Cartia (Generic name) and coupled with (I think didronel- although I've just been taking the cartia) it actually over a three yr period and slight increases finally reaching 360mg disolved the calcium in a 20-30 yr old black male. I also read an article about Hydromagnetic Apparatus - sounded like something similar to lithotripsy( kidney stone removal machine) but of course no one has ever heard of it- hydromagnetic apparatus that is. If your calcium is not quite breaking thru yet inquire about lithotripsy cause kidney stones are made of calcium is ALMOST the same concept. I know here in Georgia they don't have a frequency high enuff but the do in Germany and maybe where you live. I'm going to see an oncologist tomorrow and see what they have to say, I'm trying not leave any stone unturned (ha-ha not intentional but the phrase fits..). I have a rheumatologist, endocrinologist, nephrologist, oncologist, infection control, pain management and a general doctor... Somebody WILL figure this out and I will get better. )Of course it will probably be me that figures this out but So what.. Hey my other thought was to write Montel ( cause he has MS so would maybe be sympathetic or know doctors that can help) or Oprah (shes just got a big heart and would hopefully know someone who could help) But I haven't had time to figure out how to get their address nor the time to watch the show and write it down. If you come across it please let me know I'll write to them and maybe they can help.
I'm 34 yrs old, married to the most wonderful understanding man, and I have a step-daughter and 3 dogs. I was diagnosed @ 12 and went quickly downhill and into a wheelchair/then bed bound. After many ups and downs I graduated highschool -walked across the stage, went to college had to come home 2 yrs in and back to wheelchair. Now I'm out of wheelchair not very strong but I have a good life and I plan on hanging around a long time no matter how bad the calcium or pain gets cause I'm a determined and strong person...
Sorrry this got so long.. and hope i answered everything. I also know what its like to have a bad day, I do get bad days but strangely enough I'm not a real sympathetic person - sorry if that came out wrong or sounds mean.. I am here if you need to talk as I think my calcium is a little further advanced than yours and I can try and tell you what I've been thru and hopefully help
Holli
It sounds as though you are about to battle calcinosis.. I pray that I am wrong. I don't remember how mine started but just hearing knobby, hips, pelvis and pain leads me to believe that you are about to travel down that road. Please inquire now about lithrotripsy or Cartia (generic namebrand)- read my post reply to ashley it explains the above in a little more detail. You are more then welcome to ask me any questions you need to as I have dealt with this so long I am as open as I can be hoping it will help someone esle. I firmly believe if you are in the beginning stages of calcinosis you can be helped. Please ask doctor and do your own research on Cartia and didronel (two drugs that in a case study dissolved extreme calcium deposits in a young black male). Wouldn't hurt to ask about lithotripsy either. I do hope your Dermatomyositis is in remission and all goes well with thwarting the calcium. Stay strong and keep God close.
sincerely
Holli
Holli, I have calcinosis also. I am seeing a dermatologist at Univ. of Washington here in Seattle. I had one treatment so far, he injectrd Kenalog into each of the calcium nodules. Kenalog works gradually, and I feel their is slight improvement, but the next scheduled appt. is not until January 2010. If there are further complaints on my part, I can always contact the physician, but I have complete faith in him. Look into this, and good luck. Hugs to you!
I am desperately searching for some advise. If anyone would please take a minute to reply with any, I would be forever grateful! About three years ago I started getting sick. It is at the point now where doctors seem clueless and because I dont have insurance, Im basically walked out the door with a prescription for antibiotics and thats it. I have these very painful sores that started on my face and have now spread thru-out my body. It starts out as itching and and a red rash and within hours turns into little bumps. You can see the white deposits under my skin as it thins when this happens and eventually breaks open. I can scratch an area pretty much anywhere at this point and end up with little white things all over. They seem to start out as kind of collagen like but get harder over time. Sometimes it seems like grains of sand are comming out of the lesions and a chalky white fluid. They will not heal and get worse over time leaving horrible scars and discoloration of my skin. Within the sores are what seems like endless white deposits that will not stop coming out of the tissue and are getting bigger as time goes by. The med doctors I have talked to give me a stupid look when I try to tell them about it. They are extremely painful and burn. My skin feels and looks like its tighting when the sores start to dry. The never scab...just get whitish and where I had previous lesions, the skin is shiney, discolored and scared. When they first start, they feel really lumpy like and eventually the white things break thru and get worse from there.
I have a whole book of symptoms: Swelling of the face, hands, feet and leggs. Muscle pain, weakness and stifness. Knots or lumps in my back muscles and recently found one in my legg. Depression and anxitey. Kidney and chest pain. Problems with my jaw and food getting stuck in my chest. Stomach problems. Protien in my urine. High white blood cell count. I feel ill all the time. Skin lesions that will not heal and tiny white things coming out of my skin everywhere - the worst on my face, arms and hands. Hair loss. Massive headaches and migraines. Im sure Im forgetting some! If this sounds like anything you may have please let me know. I feel so alone!!
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