Question for my Scleroderma Professionals

Ok, so I've been going for a test everyday ...... hoping it will end soon. I have been having such pain in my neck and had a MRI done and it showed bulging discs but have very bad arthritis in it..... So here's the question........ If I have bad arthritis down my spine, is that part of the Scleroderma. I know many many people have arthritis in their spine but in my case does it tie in with my disease ????? I also had a nerve test done from my neck to my toes..... PAINFUL TEST .... I have nerve root damage all the way down to my feet..... and neuropathy in feet,(I know that's from the raynauds), I don't know why I agreed to have all of these tests done, it just costs so much money and when it's over all the Dr says is "monitor this", or "it's part of your disease"..... I KNOW THAT IDIOT. I also have been trying to look at some bloodwork I had done...... which ALWAYS SAYS "ANA SPECKLED PATTERN" 1:64........................ what does that mean ???? So I go for a right and left heart cath Nov. 9th and maybe it will be almost over............. THANKS FOR LISTENING....... I love to vent on here, everyone is in the same boat.

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Csublett,

It's my understanding that when an ANA test is done by the old (gold standard) IFA (or IFL) method, they are using normal live cells affixed to a slide. They are treating the blood sample with a fluorescent agent to "tag" any antinuclear antibodies that may be present. Then they drop the treated blood (serum or plasma) sample on the live slides and each type of antibody latches on to different parts (antigens) of the cell nucleus, depending on what type it is. They can look under the microscope and see where in the nucleus the antibodies have attached. The attacked parts of the nucleus will glow green under fluorescent light. That's the "staining pattern" and the pattern differs according to what antibody is present. For example, the anticentromere antibodies migrate to and attach to the centromere portion of the cell nuclei. Then they can do serial dilutions to see how much they can dilute it before the fluorescence disappears from view. That gives a measure of the strength of the antibody reaction, and is called the titer.

You can see these patterns pictured at http://www.cli-online.com/index.php?id=767&fromEmag=1&qry=24864 . Click on the image to enlarge it. You can see why I've previously said that an interpretation of these patterns would be only as reliable as the technician doing them. Nevertheless, any of these would be considered a positive ANA.

Now go watch the video at http://www.sclerodermavideo.com/talk8.htm and pause the video on the charts showing what staining patterns correspond to which of the 9 scleroderma antibodies, so that you can really examine the chart and soak in the information.

As you can imagine the live cells have a zillion different antigens that can serve to attract the antibodies. However the new multiplex system does not use live cells and consists of a selected number of antigens only. It gives a lot of false negatives because a large number of the nuclear antigens that normally attract scleroderma antibodies are simply missing from the test.

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Thanks DaisyDo, I will start reading ASAP.... Can I ask you something.... are you in the medical field because you are so smart.......... wish I knew as much as you do. Thanks again

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csublett,

Just wondering, in regard to the arthritis symptoms, have you ever been checked for lyme disease?

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CSublett, Thanks for the compliment. I am a doctor of optometry (O.D.) and when I practiced (for 20 years) was also certified to use diagnostic and therapeutic pharmaceuticals. Insurances consider O.D.s to be primary health care doctors.

Going backward in time, during optometry school, in my last didactic year I did my senior pathology paper on "The Affects of Lupus and it's treatments on the Eyes". And why did I have such an interest in autoimmune disease"? Because for two summers during optometry school I had worked in research at the National Eye Institute ant NIH. I did testing for all 13 of the NEI doctors in the main clinical building as well as referrals in from the National Institutes of Mental Health. I performed visual acuities, Goldman visual field perimetry, occasional tangent screen fields, color blindness testing, colorimetry, dark adaptometry, electroretinography, and stereopsis testing. It was mainly the Goldman perimetry and electroretinography that kept me unbelievably busy. The docs all knew I was in professional school at the time and so whenever they had something interesting they would call me in to see it. I saw more rare and interesting conditions in those two summers than regular docs see in a lifetime of practice. I also got to attend the NEI Grand Rounds every friday, where even some of my own findings were presented. Among the doctors I worked beside was the great D. G. Cogan, for whom Cogan's syndrome is named. He was the best neuroophthalmologist in the world, and my what a fantastic brain he had!

Anyway, much of my goldman perimetry testing had to do with a protocol that was being done on the use of Plaquenil (hydroxychloroquine) on Lupus patients. So of course I was doing baseline and followup red target field testing on these patients to try to monitor them for the possibility of chloroquine retinopathy. But as you'll see as we go backward in time, that was not my first exposure to research in autoimmune diseases.

Before optometry school, I spent 5 years (got my tenure before leaving so that I could draw out my retirement funds to use for optometry school) at the Bureau of Disability Insurance at SSA. And so about 20 disability case folders came across my desk every day. Over 5 years I saw just about every disabling condition you can imagine.

Before that, I worked as a biochemist at both the US Agricultural Research Service in Beltsville, for about a year following graduation, as well as earlier for one summer during college. I received a citation and monetary award for some research I did in protein sequencing. My supervising doctor was working in research on the structure of the muscle proteins, myosin and tropomyosin. He had actually "stolen" me from NIH. You see the summer prior to that he and I had both been working in biochemistry in what was then called the institute of Arthritis and Metabolic Diseases at NIH. So you see, that's where it really all began. Our boss was the great Koloman Laki who revealed by his research how fibrinogen gets transformed to fibrin. Might I add that Dr. Laki was a fascinating character who, during lunches out, used to regale us with tales of the Hungarian underground during the Hungarian Revolution.

Anyway, when I was finally told that my ANA was 2560, all my docs showed, one by one that they were clueless. Unfortunately, being an O.D. instead of an M.D. meant that I could not order tests myself. I had to research the literature as to what my very gradually evolving signs and symptoms might signify. Had I not, I am certain I would still be undiagnosed. I ended up telling my docs what tests to run, kept a file, and ultimately got myself to Dr. Steen. I went with a stack of lab tests and presented them one by one to her fellow who then disappeared for about 15 minutes presenting it all to Dr. Steen. When Dr. Steen came into the room, she looked at my puffy fingers and nail folds and said the diagnosis was definite.

As for you question about arthritis in the spine, I'm not sure I would call it that. But I do have 4 herniated discs and a fifth bulging one, as well as the spine showing up as hypermetabolic (inflamed) on PET scan and my cervical vertebrae spontaneously fusing together. To me the fusion and inflammation sound like ankylosing spondylytis, which also is genetic. My father had all his lumbar vertebrae spontaneously fuse together. I seem to recall that it's the HLA B27 haplotype that does this. And there is a doctor in Houson who is currently doing gene analysis to see if there is a genetic linkage between scleroderma and ankylosing spondylitis. I am going to be donating some blood to the scleroderma registry to be used for this purpose. I want all of you *diagnosed* scleroderms to consider donating an extra tube of blood for the registry next time you are at your doctors. There are forms you fill out to give permission to do this. If your doctor doesn't have them, you can find them online at the scleroderma registry.

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I'm going to through my hat in the ring and share that I also have herniated and bulging discs in my neck ( with Scleroderma Sine)
and that my husband had his neck discs (what was left of them) fused to a steel bar and he is a sufferer of Anklozing Spondylytis.

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Interestingly, the scleroderma docs never seem to ask about spinal problems. Perhaps if they did they might find out that spinal degeneration can go along with it too?

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wow daisy,, you must have been in research heaven! so glad you are here and sharing your expertise.

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Well, when my right shoulder became so frozen that I could no longer reach out sideways to do confrontation fields on patients, and my fingers loss enough sensation and dexterity that I could not screw miniscule eyewire screws into eyeglass frames, and so much other such stuff, I retired. That came at the same time that my dying parents needed me to care for them anyway.

And so I have the time to help out here, and besides, I learn from it, too. And of course like everyone else here, it's good to know I'm not alone in the world with this rare disease- though I wouldn't wish it on anyone!

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I have perhaps another thought about my Scleroderma. I feel that the onset of Scleroderma was a result of many years of chronically undertreated pain from multiple bulging discs and piriformis syndrome. My body has had no other choice, but to try to mediate the pain. Unfortunatley, I am attacking/ reacting to me.

Daisydoc, as an RN, I always appreciate your comments and teaching! Thank you for giving me/ all of us, encouragement, rationale, and knowledge. You are a gift!

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:) I do think stress might be a triggering factor in scleroderma. Each one of my 3 major autoimmune flares was preceded with horrible stresses.

As for bulging/herniated discs, so many, including myself here have mention them that I'm beginning to think they may be caused by scleroderma, and not vice versa! Who knows at this point?! We won't know until scleroderma docs start routinely asking about spine problems. They just don't seem to ask! I also have the occasional hip pain that feels like a pinched nerve, but which has never been diagnosed. Just too many other things going on.

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I, too, have ankylosing spondylosis,; deteriorating disc disease. Started in my neck in early '90s 1998 I had C-3 thru C-7 fused with stablization.
I also have lower disc bulging and herniated but trying to live with the pain.
I have wondered if this had anything to do with causing my SD
this is very interesting

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Wow, I have never put together the bulging and disc disease with Scleroderma......... I lived closed to the Steel Plant growing up and there was always an orange cloud above the house. I found out after I graduated from high school that 4 people out of the twenty in my class,(went to a private school with a very small class size), was diagnoised with either Scleroderma or Lupus.......... I figured inviromental right ????? That's a high percentage..... Then I find out that my maternal grandmother had RA, so that blew my theory out of the water. I do think it surfaces when your body has trauma or you get sick. Mine surfaced when I got mono. Everyone is so informative here. I really appreciate all of the feedback. I wouldn't know anything if it wasn't for all of y'all.

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It's interesting to read about other's symptoms and diagnosis' (as most of us know .... sometimes it can take YEARS to actually GET a diagnosis!). Anyway, what I find missing many times is the "what did I do next". Ok, so perhaps there's evidence of a connnection between arthritis, spondylosis, other spinal issues and a host of other issuess and scleroderma.

I find this one interesting myself because about 15 years ago I was diagnosed with degenerative arthritis in my spine, 3 bulging disks and 1 herniated disk. Degenerative arthristis runs in my family as does rheumatoid arthritis and my sister has spondylosis and muscular dystrophy (which I have as well).

As I've posted many times, I learned about nutrition and specific products that actually are what they say they are! There is a HUGE difference in products! Many supplements ... please....you can get more nutrients by licking the sidewalk than what's in them.

I started to take supplements. Now, you don't know me, but I'm an EXTREMELY hard sell on stuff like that. I have to REALLY see that it works for myself. But I'm not so hard headed that I won't at least give something a fair trial. I personally believe that you must TRY something to know for sure how it works for YOU. Just because you know someone it worked for doesn't mean it will work for you. Likewise, just because it works for you doesn't mean it's the answer for someone else either. And again .... there ARE some basics that everyone needs. Like water. Everyone NEEDS water. Same with Calcium, Vit C, trace minerals ... etc, EVERYONE needs these things.

So ... I learn about nutrition. I RELUCTANTLY take some supplements. No big difference. I try other supplements... some seem better, some made me worse. I didn't experiment with a lot of different brands but kind of came to the point that I just stuck with what I was using. Then my husband got sick. He was introduced to another line of nutrition. I was totally against another trial. I knew there were better supplements out there, but I was simply at the point that I didn't want to have that hope and then go through disappointment again. But he started the supplements and after time, I could NOT deny the results. I eventually started taking them, as did my children. I could NEVER have imagined how well GOOD supplements/nutrition could assist the body! Lets face it ... NO product/prescription fixes the body. The BODY fixes the body. But giving the body the best fuel you can find makes a huge difference!

My results ... here I am, 15 years later... I never had ANYTHING done with the back issues. My last MRI shows NO arthritis, no buldging disks, no herniated disks. I do backbends now and keep physically fit.

I was diagnosed with diffused CREST syndrom scleroderma about a year and a half ago. Once I knew what I was dealing with, I started adjusting my supplements to help my body's immune system calm down. If you can help the "source", you can help alleviate the variety of symptoms that come up.

I've done really, really well. I had a lot go wrong quickly, but I kept up nutritionally, road out the down times and worked HARD at keeping myself physically going.

Of course I still struggle. There are still residual issues I deal with daily. However, I AM able to live my life. I Thank God I'm not bogged down by prescriptions and all the side-effects of those. Been there, done that ...NO Thank You if I can avoid it at all!!! Every single one of my docs who know my history are amazed at how well I am. They've seen the scans, bloodwork, physical damage ..and see how I have HEALED! Healed ...Now THAT'S a word you don't read in the posts very often. But YES, I have HEALED in many ways I was told I never would. "Accept the damage and learn to manage", I was told. Guess I'm too stubborn to accept that. I wanted to continue my life as best I could and simply accepting and adjusting was not good enough for me. Guess my stubborness paid off.

There is a downside I will admit. There are many times when I am tired and in pain. But I look good, so people do not take it seriously when I say I can't do that right now. Like when I had 2 10" DVT's in my arm and 8 pulmonary embolisms. I sat in the ER for 9 hours ..they kept telling me "there are more needy people than you that have to be seen". Even the ER doc said I look to healthy to have anything serious going on. Then they ran the tests and scans and my then 14 year old daughter is being prepped for my pending death by morning! All the docs "swore" I could NOT be that sick because I "looked" fine. Well looks are deceiving let me tell you!

Ok....I've gone on enough. I DO want to encourage all of you to keep an open mind about supplements ...GOOD supplements that is. Bad ones CAN do harm. Just because it's "natural" does NOT mean it can't hurt you! Black widow spider bites are natural ... rattle snake bites are natural too ... but they can kill you or cause significant damage!

Laurie

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are you willing to share the type of supplements that work for you? I would love to read about it. If you'd rather email me, my address is mblpac@comcast.net. Thanks for your input, I appreciate it!

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I totaly agree on taking vitamine suplements. I saw a homeopathic doc last week been on his treatments and taking vitamine D E Calcium and an antioxident called OPC-3...went from having pain(on a scale of 10 ,10 to 7 everyday)to almost no pain! I have to take that 3 times a day and feel good to one exemption I'm a little more tired but that i can deal with anyday with nice cat naps :). It all depends thow on how you can tolorate vitamines. Dont take the multivitamines some of them have certain *little extras* that are not good to our imune system. Do stay away at all cost from echenicia, that natural remedy often taken to boost youre imune system when you have a cold or flue, the scleroderma , artheritis and fibro dont deal well with that I found out the hard way when i was rush to the emerg with dangerously high fever and other complications. Hope this helps Toodles :)

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Laurie, you are so right! The right Vitamins, a probiotic for Candida, Symbion, and 5 years of aerobic swimming & I continue to puzzle all my doctors. They don't have the solutions - our own bodies & stubborn perseverance DO! And this wonderful website as well.
Katie

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I've had neck pain for many years and stress made ot worse. Most of the time it would progress into a migraine headache. The pain never went away. Finally my doctor suggested Physical Therapy. I decided I would give it a try. It didn't help at all and often I felt worse after a treatment. My physical therapist decided to try traction as a last ditch effort. Guess what, by the time I left I was completely pain free. What a relief!!! First time in years I was pain free. They suggested I purchase a Saunders Cervical Traction device. It was expensive but surprising enough my insurance covered most of it. Now I can do the traction anytime my neck pain/stress gets bad.
I had gone a whole month last march getting a migraine everyday. What a relief!!. I still get migraines but if they originate in my neck I can then do the traction to break the cycle. I learned neck exercises I can do no, matter where I'm at, when the tension/stress begins.
It's so difficult when doctors don't have an answer.

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