Scleroderma - diagnosis | Arthritis Information
When I was diagnosed on 6/6/6 with RA, lupus, scleroderma and polymysitis, I kept asking for a trip to a diagnostic hospital as I just wasn't comfortable with the diagnosis being complete - I got two second opinions with more terms like mixed connective tissue disorder or undifferentiated or differientiated connective tissue disorder, and lupus more than RA. In any event, I was told it didn't matter, the treatment was still the same: Predisone, Methotrexate, Plaquinal.
I have been looking deeply at the scleroderma as my scleroderma titers came back highly positive, but the MDs have not addressed it at all, probably because it has no treatment or cure. And the statistic that Raynaud's is a precursor to full-blown scleroderma is something close to 90%. These recently formed blisters on the fingertip pads of all ten fingers these past six weeks is classic Raynaud, the beginning of ulcers, which has been one of my most prominent symptom, other that terrible digestive problems, right lung field pain, and a terrible headache. A year ago I had a wild episode while vacationing in a "pyramid" house and my feet turned bright blue. A call to RD said it was Raynauds from stress and reduce my stress. Raynauds came be brought on by vibrations and heat and the place was a psychic hothouse.
Well, scleroderma causes joint pain and curled fingers. I do not have red, hot, swollen joints. I don't have morning stiffness. My RA factor and SED/ESRs haven't been that high. I have been reading everyone's posts, especially newcomers, and I cannot relate, at all. It's like I have a "little bit of RA", like the recent thread. I have some stiffness after staying in the same position too long, but it's like my skin is stiff, not my joints. My RD would push on a couple of my finger joints that are growing tumor-like bumps and says does this hurt - no. Calcinosis is scleroderma. My first nodules were on my left forearm and have not changed since they popped up in 2004.
I have terrible constipation, then terrible purges. I thought it was from inflammation, but am reading this is scleroderma. I have trouble swallowing, which I was told was thyroid and had dilitation, but this is scleroderma. I don't have acid reflux, but am developing hoarseness and as an experiment, have started drinking baking soda water once or twice a day and my entire feeding/elimination system has improved - from the hiccups to swallowing to regulated bowel to feeling a bit better overall.
The lupus has now been completely ruled out by DNA testing. So the raised welt on my forehead with this diaganol slash across my face at times, plus the small raised red bumps are symptoms of scleroderma (le sabre, the sword cut across the face), not lupus which is what I was thinking. The "v" on my chest is formed to the right side of my body and is only half of the lupus wolf scarf. It's made up of broken capillaries and these "spider veins" are developing rapidly on my legs - vascular problems are scleroderma. I have sinus tach and a heart that just "turns over" at times, but nothing ever shows up on the tests.
There are several forms of scleroderma and my research notes that each person's case is individualized. Linear sclereoderma- for years I have noticed that my right side of my body has changed appearance and color compared to my left side, where before it was even, and I know that it's never a perfect match, but it's been a gradual change on my right side of my body - my right side of my face sags a little more, my right foot is splayed out, my left is straight, and my hands, feet, legs and arms are all now very visibly a much darker red shade than my left side.
Raynauds can last around 15 minutes to a few hours. This is also what I have had with my symptoms that has driven me and the doctors crazy as I cannot reproduce my symptoms for them. Something bizarre will happen, then it disappears. But, these finger ulcers haven't gone away this time. I am disappointed that the ER doctor, my former rheumatologist, and my primary have never examined my hands since this bad attack at Christmas, all of them just stated it was carpal tunnel and to have surgery.
I am having serious doubts about my diagnosis and the medication treatment I have received - scleroderma has no cure - and the only medication that I have researched that seems to help is TA DUH - minocin. LOL MTX is mentioned on some sites, on others say MTX and DMARDS do not help, that only treating the symptoms with palliative methods, like help with digestion and the skin are the only suggestions.
I have for over a year now tried to fit into this Board, and it just isn't working. While I can relate to being sick and hurting and have been given great advice and met wonderful, strong people, I haven't found any poster that even comes close to what I experience and this also is adding to my conclusion that my problem is not rheumatic in orgin. Scleroderma isn't even listed in the opening pages of this site as a rheumatic disease and it's hard to find consistency that its an autoimmune disease.
I had my two-month blood draw on Friday and my checkup on Thursday and am going to ask for MRIs of my hands and wrists. I am going to ask once again to be referred to a diagnostic hospital for a workup. I am now almost four months off the MTX and Plaquinal and just keep feeling better and better the further I get away from them. I didn't think the predisone did a thing, finally felt some changes after 9 months of MTX, and didn't think the plaquenil did anything either. The minocin and pain relievers are the only two drugs that have worked so far. I take klonipin for seizures, that's scleroderma. The list goes on and on.
The end. Thanks for reading. Take care ~~ Cathy
Cathy, I'm so sorry. I just don't know how to respond to your post. I think that pretty much everyone here on the board considers you to be "one of us". I can see that you want someone that you can relate to in a more specific way, I don't blame you. I would too. But the fact is that we all have some struggle here, some more than others. Let me just say this, I hope that even though none of us here know what it's like to have scleroderma, I hope that you will let us to go through it with you, as you do with us and our various diseases. Geez. What a bunch, huh? :)
Linncn2008-03-22 18:00:40Thank you Linn, that was very kind and as usal, dead on and to the right point. I have been very sympathetic with the members in here as I do relate to being sick and hurting, it's just that I have become uneasy with bringing up my symptoms and my progress as it just doesn't seem right if I don't have arthritis or an autoimmune condition. And yes, we are quite a bunch LOL - thanks. CathyCathy
It certainly sounds like you do need to seek another medical opinion. It's a shame- but more and more people I know research their conditions extensively on the internet and end up in a sense- being their own doctor. They then report their findings to the person they pay to take care of them so they can get the proper care and treatment.
Please keep us posted- we love you whatever your diagnosis ends up being!
Well Cathy. I say bring up any symptom you want to. I may not be able to say, "Oh I know, I hate that". Maybe all I'll be able to say is "eww, that sounds awful" or "o my gosh, you poor thing". I guess if you're willing to comiserate with us and our bad knees, we can do the same for you and your tight skin. I know I will. :)Maybe we could have a game of "dueling symptoms" where we try to outdo each other with our awful disease.
I will work on my fencing skills :) Thanks wantobeRAfree - and I know what you mean about the Internet and paying doctors for you to tell them what is wrong and what your treatment should be. I guess this is progress in the medical field and makes it easier on everybody - if you come in knowing what your problem is, they can order up the test to confirm and you already have researched the drug/surgery treatment for them. Perhaps embracing the Internet and health care will bring down costs and cut down on some of needless suffering.
We would not want you to leave us. We are a support group after all. It does not matter what your DX is, you still need some one to listen to you and support you. Besides we would miss you if you just left us. Wow, that's rough. Scleroderma is a tough diagnosis to have because there aren't many treatments. I think you should keep posting here because you really bring a lot to the board and people care about you and want to be there for you through these troubles, including me. Also, it would be good to swap info about minocin and probiotics and stuff. (I think you should increase your minocin to 200mg a day since that's the dose scleroderma patients take, as you probably know). There's also quite a few people with Scleroderma on the road back bulletin board---some of them are doing very well, so that might be a good place to post as well.
You seem to be doing a lot better on the minocin, so I think there's a lot of potential to that treatment. Also, you are very proactive about your health and that always makes for a better prognosis. It's a hard disease but you do have options and people to talk about what you're going through with.
Alot of what you spoke of rang true for me as well. I don't know much about scleroderma so I did a quick google search. This quickly stood out:
So obviously you aren't so different from anyone else here at all. Many of us could have symptoms of this and they aren't recognized as that.
Several things you said rang true for me. One: The tightening feeling of the skin around the finger tips especially. Also my nail tips have started to turn under. A orthopedic doctor I saw said that's classic RA "spooning" but that was the first I'd ever heard of that. For about a year I had a bump near the nail bed that my RD referred to as a syst. TWO: One side of my face, especially around one eye droops. THREE: I have raynaurds, and after reading what I googled I'm a little concerned about one ear. I have one ear that will turn blood red. Very weird! I didn't realize it could effect the ears.
So; I doubt I'm alone when I say we all have much in common.
JSNM~Is there an actual blood test for scleroderma? How is it dx'ed?
Cathy, I hope you will be successful in getting the correct dx and also that you will continue to post here! I think you are valuable to the board, and I notice that you are very good at responding to newbies and helping when they post on AI boards other than this main one!
If you do have scleroderma, Roadback is a great resource for sclero patients on minocycline. I'm seeing more sclero than RA there lately, as a matter of fact.
The most important thing is that you are feeling better, that you haven't given up, that you keep questioning and trying to learn and trying to find an answer that makes complete sense to you. I think you are a good example for others to follow, and I wouldn't want this board to lose you! Take care.
hey babe, i can relate to the frustration..
I think you can only do so much research, reading, before you drive yourself batty..
but yeah its good to read/ research some.
Then you have to figure out , what the meds and your Drs are making sense.. and kinda play and ITS YOUR BODY... you'll know whats best for it.. what works..
Like I take verapamil and its for highblood pressure, which i don't have.. I take it, bc
THANK GOD, a wonderful nurses ..(she's the kinda btwn drs and Rn's)
came up w/ it , as a solution for My MIgraines!!! YAY.. gawd what a f release..
now what i'm wondering, are your boobs different, on the other side too?
lopside, one white, one red?... naw not gay, just had to say something, for
maybe a chuckle or the basic weird mood, i'm in for lack of sleep!!! lol
gentle from a distance hugs :)
Whispered
All right, you all got me laughing, thank you. First of all, YES to the boob thing, I just was being circumspect, but that was another thing I have noticed on the right side, just a small change, but a change. My hubby doesn't care, thank goodness (I don't think he has even noticed). I have had the red ear lobes for years, but all of these symptoms: fingers, toes, ears I had put off to frostbite being from Alaska (go out and play, it's only -30 you wimp :) I have read lots on how everyone explains any physical symptom away to put it to rest, and I honestly thought all this extremity coldness was from frostbite. My nose and cheeks I am sure are frostbit from downhill skiing.
Yes, there is a blood test for scleroderma and that was done on 6/6/6 - next time I am rummaging around in my blood test file I will let you know what it was - but it was definite for scleroderma.
GoGo - I plan to up my minocin after Thursday's appointment. I almost upped it myself a month ago when I realized what was happening with the scleroderma, but I promised my primary I would not do anything with my meds without talking to her first, so I waited. Plus I want to see how my labs go on another 60 days without the MTX and Plaquenal for the previous high liver enzymes. I read that MTX has a high rate of liver problems and minocin is very low. I am hopeful I still have normal labs, which will make it four straight months of minocin and normal labs, but we shall see.
And today's symptom of the day is this right index finger which is twisting up (I explained it away as "mouse hand" years ago) and was inflammed and skin stiff this a.m. upon awakening (not unusual, that's my carpal tunnel) and when I did my hand exercises and finally got it to curl, something is wrong with the first knuckle and I can feel either a tendon or bone rubbing against each other. So today will be knuckle day. Tomorrow - who knows? It's a box of chocolates for me.
Again, thanks for the support, I greatly appreciate it. Happy Hoppy ~~ CathyAK
justsaynoemore2008-03-23 09:00:07Cathy, please, don't ever think that you don't fit in here. You're a valued member of our group and we would feel a terrible loss if you left us. Besides, for what it's worth, from what I've read, your DX places you squarely in the autoimmune category. Like you, I was DX'd with an undifferentiated connective tissue disease and am being treated like it's RA or lupus, just as you were. I don't have RA or lupus at this point, but it's still autoimmune, like you, and let anyone just try to kick me off of this board!!! LOL You belong here, regardless of AND because of your diagnosis. We need you and I hope you need us.
Hi Cathy,
Have you been to www.sclero.org ? My daughter has/had en coupe de sabre scleroderma and the scleroderma network helped us locate and make an appointment with a scleroderma expert. She was treated with methotrexate and supplements for 1 - 1/2 years and is in complete remission. They also have a great forum. It might give you some piece of mind to see a specialist and know you are getting the proper treatment. There are treatments that can help.
Laker
Jesse, Laker - thank you. I was being a little to sensitive to the nuances in here. And Laker, I hadn't seen that site before, but have been to others, which I have noticed are mostly in Canada, England, other countries. I will check it out. Unfortunately, MTX didn't agree with me, but I am going to bring this up to the top of my list on Thursday. I am starting to see the situation a little more clearly now and can understand why rheumatologists and other doctors don't want to touch (literally) a sclereoderma patient. I work with my hands for a living and if I lose my fingertips, that isn't going to help an already badly damaged family situation because of my illness and the huge amount of wasted monies following medical rabbit holes. Hope everybody is on a Easter Bunny sugar high :)
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