Confused after dermatologist visit
Posted 20 June 2008 - 11:06 AM
I have posted a few times here before...I have symptoms for about a year and 1 and a half month. Started aprupt.
Now the puffy fingers definitely have worsened (started after about 4 month and now the ring got no chance, yet with my bony finger, doctors do not even see it...and it also changes during the day and also between days.)
The dermatologist I went to is supposedly an ANA expert...but he (in his head) surely diagnosed me a hypochondric...he told me, not Raynaud, no ANA...forget it...not clinical signs....well he missed to see the puffiness, he missed to see the splinter hamoraghes under the nails (as I crurently did not have any), he missed to see my clawlike nails (they were straigt before)...or he saw them, but told me his were more bend...(not true)....and I did not even mention the sicca and for my back problems he just told me I should have checked it for some other problem....yet my back is clearly not hurting due to the spine, but due to muscles and tendons not moving as flexible as they should...I can tear it loose...just hurts and after 5 min it is like glued again....
Now my question....how long and how strong did you have the puffiness thing, before skin thickening started and Raynaud started...bear in mind, I can still make a fist without real problems (yes hurts a little bit as the skin is stretched then, but I can make it). Does that mean I have a mild variant (as I miss ANA, Raynaud, and the puffiness is only at the fingers and only a bit...does it mean the worst is yet to come....(of the puffiness I mean)....or wuold I have already thik skin everywhere by now (1.1 years...) if I had diffuse...can I lay back already if nothing severe happened yet...or is this time fram quite normal and I still have to expect that all the other stuff will follow?
can anybody (having diffuse...as it can in my mind only be diffuse if at all)...respond how it started and if this is already at a point where at least one can say it is only mild...(well what does that mean...just takes longer to get worse?)
Maybe you can help me with your response....
I simply recognize, that the skin is involved (no doubt)...face chances, dry skin on hands and arms, scaly skin on hands...strange dry skin on face, that I can "feel"...(forehead, arm, feet), wounds that heal differently and slower...no doubt this is some form of skin disease....and as I have heard that many do not have ANA and Raynaud often only kicks in later ...especially with diffuse and with men....so I am still on the alert mode...(and yes, the puffiness worsens). Nevertheless the doctors say without Raynaud and ANA I should not even think about it....
Posted 20 June 2008 - 12:17 PM
I was diagnosed with Systemic Scleroderma Limited/CREST 1 year ago now. I have very mild swelling in my hands and have had that for likely about 1 1/2-2 years now. They have not progressed any further yet fortunately. I do not have tightening of the skin on my hands except for around my cuticles. I do not have Raynauds yet either. My ANA is positive for centromere pattern. Diffuse pattern is associated with ANA SCL-70. Scleroderma can come on slow or strong, even with Limited/CREST as I understand it. Usually with diffuse, I believe it comes on very fast and strong. Someone with more knowledge on diffuse can answer that for you much better than I can and I'm sure someone on the site will.
When I get cuts, it takes them forever to heal as well, what might have taken 1-2 days to heal now takes several weeks. I don't heal properly either, any wounds heal with very dark scars where when I was younger and this disease was not evident, I would heal properly and without any scars at all.
I also understand that every person can be affected differently by this disease because it's symptoms are all over the map.
All I can suggest for now is that you stay on top of anything you feel is not right and be sure to see a Rheumatologist (they are knowledgeable in different types of autoimmune diseases as well)...for example, some people only get so far as to be diagnosed with a connective tissue disorder and can be like that forever because no other symptoms are visible to nail down any other type of firm diagnosis. So, it's good to stay afloat of things and treat the symptoms as they appear with a good doctor you are comfortable discussing things with.
Not sure if this helps but I'm sure someone else will chime in soon!
Posted 20 June 2008 - 03:43 PM
Please keep in mind I have no medical training at all (and I may be wrong -- I often am!!) and rely on your doctors for specific medical advice. The medical term for claw-like nails is onychogryphosis.
Wrong Diagnosis.com has this to say about it --
"Abnormal thickening and curving of the nails which gives them a claw-like appearance. It can affect the fingernails and toenails and may result from trauma, permanent shoe pressure, infection, diabetes, poor blood supply or inadequate nutrients."
There are many other possible causes for the symptoms you describe, other than scleroderma; particularly, edema, perhaps caused by poor circulation, for example. So it may be premature to worry about that. The first step should be to look for the most common causes of symptoms and to have each of them properly evaluated, on their own merits. Perhaps you'd want to try the Mayo Clinic Symptom Checker.
I find it most helpful to approach doctors with an open mind. Unless you've already been told you probably or may have scleroderma by a medical doctor, it may be more beneficial to lay out your symptoms (in a complete list) to appropriate medical professionals and solicit their opinion for all possible causes. Then, one by one, investigate them. Odds are very much in your favor that you don't have scleroderma as there are still many other more common -- and treatable! -- causes of your symptoms left to investigate.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 21 June 2008 - 11:21 AM
Your symptoms seem so much like systemic sclerois,but then again I cannot say you definitely have it.Neither of us are health care professionals and neither of us can properly diagnose ourself simply based upon symptomology.There are so many other diseases that mimic systemic sclerosis.
Scleroderma is a rare disease.Alot of the doctors have not really seen it and commonly misdiagnose it.I do believe its easier for a rheumatologist to diagnose the limited form because it is commonly associated with a positive ANA and usually individuals present symptoms that meet the criteria seen in CREST syndrome.
However,the diffuse form is a little harder to diagnose and commonly appears somewhat differently than what is described in the literature.It mimics others diseases and is commonly misdiagnosed as rheumatoid arthritis in the beginning.
It may appear in a different order of appearance.In the literature many first complain of swelling in the hands.However, in my case if it is true I have systemic sclerosis my first symptom dealt with lung fibrosis and now a couple of months later the swelling in the hands started to appear.In the literature it says that lung fibrosis usually appear later in the disease and only a few individuals may present with it as the first symptom in systemic sclerosis.
Also,in the diffuse form many individuals have some of the symptoms seen in CREST or none at all.They may not fulfill the entire CREST criteria.So the fact that you don't have raynaud's does not mean you don't have the diffuse form.And you're right it may appear later in the disease if its the diffuse form.The diffuse may progress rapidly or possibly take a slow course. I've read for those with the diffuse form that have a negative ANA the progression of the disease is alot slower so that may explain why some symptoms appear earlier and some later.
It is also true what you said earlier that the ANA is commonly negative in the diffuse form and may appear later in the disease or may not appear at all.I've stumbled upon many articles in which individuals suspected of having systemic sclerosis were found to be ANA negative for the first five years and later testing positive.Therefore ANA is a weak test and even if it is negative it does not mean you don't have scleroderma.The ANA is only a tool in helping make a diagnosis.
So you can see why its harder for a physician to diagnose the diffuse form of the disease.Someone in this forum said it usually takes up to six years for men to be diagnosed.I guess its not until all the symptoms appear that it is apparent the individual has the diffuse form of the disease.And that may take a long time time unlike those with the limited form in which the symptomology appears somewhat faster and all or some at the same time meeting the CREST criteria.
I believe you said you have been dealing with this since the last year or so.So I suppose its going to be harder for the physician to diagnose it because it still may be early in the disease for the symptoms to be obvious if indeed you do have systemic sclerosis.
The other reason why I suppose it takes such a long time to officially diagnose it is that many doctors are not experts in such rare disease.People usually go to many doctors before being diagnosed properly.Its not until they run into an expert that they are officially diagnosed.
I can understand your frustration of going to many doctors and running into dead ends.I been through many doctors myself and feel like giving up. My advice is keep don't give up.You should go to a expert in the area.I believe you said you had an appointment in two months with a specialist.Its only wise to wait till then.
I personally am going to wait to see a specialist until the physical symptoms are more obvious.Then only if the specialist suspects systemic sclerosis he or she may order additional test to confirm the diagnosis.Such as nailfold capillaroscopy and barrium swallow.Since my ANA is negative I guess the specialist will only make a diagnosis based upon clinical symptoms.This time I will insist on testing for the specific marker SCL-70 or to get a complete ENA panel done. The SCL-70 is commonly associated with the diffuse form when the lungs are involved as was my case.The other reason I have to wait a while is I don't have insurance so I'm still trying to save up enough money to see the specialist.
I remember when I saw the rheumatologist he said it didn't look like I had a connective tissue disorder.But then again I don't really blame him for saying that.That was a couple of months ago and at that time I didn't have all the symptoms pointing towards a connective tissue disorder despite the joint pain.Now I'm having many scleroderma like symptoms appearing slowly one at a time.I'm pretty sure if I visit him now he may suspect scleroderma or a disease similar to scleroderma.It would be a sigh of relief to be officially diagnosed.
I noticed this is not really the right place to look for answers.However,it is a great place for moral support and to get advice.Many here are not doctors and even if you find someone like myself that has similar symptoms it does not mean you have systemic sclerois.However I myself am more convinced that I have systemic sclerosis from reading so many posts of people having similar symptoms.But then again I have also bumped into articles on the internet related to other disorders that present with similar scleroderma like symptoms.
I cannot officially say I have it unless a specialist diagnoses me with it.I guess maybe both of us are really just looking for an answer.A sense of closure of what we're dealing with and to properly treat it.I'm tired of people asking me what's going on and why I don't go see a specialist.They just don't understand I been through many doctors already.It would be easier to know what you have and give them an answer.Its frustrating that everyday when I wake something new appears.
Since my last post my symptoms have worsened and appear so much like the diffuse form.The shininess on my hands is permanent across the lateral aspects of the fingers and the texture feels very hard and velvety now.Before the shininess used to come and go.Now I can see all the time.My arms seem to feel alot more heavier.My hands and feet especially on the palms and soles ache in the morning and commonly throughout the day.My feet hurt alot when I walk.I wear sandals now instead of shoes to help relieve the pain.It feels like I'm walking on large stones.
Lately I been of pain and stiffness while trying to open and close my mouth.My mouth appears smaller when I try to open it.I can feel alot pain on both sides of the mandible while chewing as well as mild throat pain that worsens while swallowing.Its alot harder now to articulate words while talking with someone.It feels like it takes alot more effort just to open my mouth and talk to someone.
Anyway,I hope my advice and input to your concerns helps.Please keep me updated
on your situation and your visit to the doctor.Take care and good luck.
Posted 21 June 2008 - 11:23 PM
I also have browsed a lot and read many articles and found almost all that you describe...and that at the same time is what really makes me mad...first of all there is so much oncfusing and contradicting stuff. And what is even more frustrating, that it is written by the same experts, that afterwards deny to see the obvious.
In my case I actually life close to one of the big heros of treating slceroderma and and he has written many articles himself about the fact, that it is important to see the early signs and describing them (and many of them I do have)...and yet I went to him, he looke for ANA, for Raynaud and did not even care for the rest (and like you said, at that time it was truly less obvious but even now it would be way to subtle to get him on the right path...)
And what gets me even more mad, ist that then at the same time, there are people worldwide who obviously present with what will most likely become scleroderma and have very similar signs from their description and the doctors seem to ignorant to see it. I am almost certiain that with a careful database of such people that present early claim that they have something like it, one could find many more early signs and have them diagnosed much earlier and also treated much earlier....
So, yes I would also say from all signs that it is diffuse SSc. What else would cause puffy fingers, sicca, some GI changes, a bit of hairloss, come on sudden for almost 3 month, then taper and slowly go on. And what else would make the skin feel different (I can feel it being stiff in my hands and soles...and even the forehead where it is dry for sure and also the arms). Now add a bunch of other things like burning in the mouth and tongue (better for a few month now). And some pain here and there (arthritis like), then tendon problems, back problems with tendons, sore muscles for no reason sometimes, strange nail behaviour...etc.
Strangely enough even one private Rheumatologist gave me in writing half a year ago, that it maybe something systemic but for sure not SSc...funny I believe after having read many stories here on this site and on the German sclero site....how would he exclude it for sure? There is no way and with all the sign I (and also you) present I would say it is likely...
Well as you correctely said, I have an appointment with a specialist clinic (but hey, I have been to many specialists and one University clinic already and yet with no result)....and hope that they are more alert (at least in one case presented on the German scler site they were and found the dignose and in that special case even a therapie after 10 years which even helped to improve it...and prevent the male guy from the wheelchair...so some hope....after he advertised for this clinic and the special doctor there were certainly dozens of people going there (Germany is not that big, so that this is possible). And the epxeriences so far of people having not being diagnosed for years and wrongly or not at all treated is pretty good....so that leaves some hope...yet I know in my case it is early...but I yet want to find those guys who have written those reporst telling you about all the early signs that they then refuse to take not of.
So end of July I will know more for sure (at least I hope). It would sure be nice to find some guy that had similar symptoms at the beginning and is now already diagnosed...(and as the example of the two of us shows, there are quite good commonalities...so there must have been somebody who is by now diagnosed...). I by now also belief that I am not one of the guys where it goes really quick. I had posted here about one guy erlier who I got to know from the Germany slcero site...he is dead by now after only 4.5 years...but when he was first at doctors with stomach problems they quickly tested him and he was SCL70 positive immediately....so you may welll be right, that those that have it in the beginning have a much faster course...he was not able to work after only 1 more year (I am far from that)....and he had Raynauds after 1.5 years...(I do not think I would have it so quick...else the changes had to be more severe by now after 1.2 years)....and I also read from some specialist articles that UV treatment has a better response for those without ANAs.
The only thing which ticks me off is this stupid looking for ANA and if you do not have it, then you are hypochondric...wrong....almost all men I met (expcept that guy above) had no Raynauds for years, had no ANA (some even after 10 years) and for sure did not have it early in the diffuse form.
But why do even specialists not notice such trends if even people like us find similar articles (and seomtimes written from real experts in this disease) and find also from real cases.
This disease is so littel reserached and treated as there is so much ignorance out there. That is the problem (I am a technical guy in debugging Chips and I am good at it...if we tried to find very rare bugs in one chip out of 10 Mio with equal ignorance then we would never find this one transistor out of a 40 Mio that caused the problem...). They are also rare...but we ONLY exclude stuff if we can proof it is not that...and that way we eventually find the problem no matter how hidden it is (worst case is two bugs)....But here I have the feeling things are done after the probablistic principle...lets find the most common cases and the rest will eventually become more ill and then we can diagnose them later (costs a lot of money and also self esteem)...and could negatively invfluence your rest of your life that you still have or worst case kill you instead of save you....That makes me mad as I am sure with a bit more database work and a bit more carefulness this disease could be way better understood. It is no argument nowadays saying there are too few people having it to get a good database...I mean people here meet worldwide so why can't hospitals and doctors....and why not sent suspected cases right away to real specialists and especially keep them under watch as those cases are the most interesting (those where you are not yet sure, but could become slceroderma cases)...as only if you observed those very carefully could you ever learn about the early signs...not if they stumble in already so ill, that even most of us could diagnose them...
Posted 22 June 2008 - 02:55 AM
Posted 22 June 2008 - 11:56 AM
I am sorry that you are having such a hard time. I am sending wishes that you find a physician who will take the time to listen and assist you. If you haven't done so already, I would start to keep a diary of sorts with your symptoms and when they start and take that with you to each Dr you see. Doing that helped me to remember them all so I was consistent as a sought a diagnosis. Someone will eventually connect the common dots. It took me 2+ years for a diagnosis and many doctors. Even though it's frustrating, don't give up!
Posted 25 June 2008 - 08:36 AM
The problem is that the early signs of the diffuse form mimic so many other diseases. At such early stages of the disease it can be really difficult for even the best trained specialist in scleroderma to be sure its scleroderma.
A lot of doctors usually make their diagnosis based upon a triad of symptoms, lab reports and other tests. But its also takes time to reach a diagnosis in such rare disorders. Its not like you can go to the doctor and be diagnosed right away.
Its like my old car when it started giving trouble. I went to so many mechanics and they all told me different stories of what the problem was. It was not until I reached one mechanic that he told me its such a rare problem he didn't know what it was.He was correct to say he didn't know instead of not being sure and making a misdiagnosis. He told me to wait until the car symptoms got worse and then bring it back so the problem would be obvious at that time. He said its still early to tell what the problem was because it mimicked so many other car problems.Sure enough I waited until the car got worse that I took it back to him and he found the problem and fixed it.
Many post here are similar to your experience and the example above.Someone went to the doctor and presented with scleroderma like symptoms and ANA negative.The doctor realized it was a systemic disorder,but refused to say it was systemic scleroderma.However,he told the patient to come back for a follow up.Sure enough after some time the patient presented with definitive signs of scleroderma and ANA became positive that it was easier to make the diagnosis. It took sometime for the symptoms to appear,but they eventually appeared and met the criteria to make the diagnosis.
The doctors you went to are aware its a systemic related disorder. The immune system may react very slowly in such systemic disorders. They know its going to take time until all the symptoms present themself completely that they can make a definitive diagnosis. It would be premature for them to make a diagnosis right now. Its not until you fulfill one major and two minor criteria of the diffuse form that the doctor can be sure its systemic sclerosis.
I read your symptoms and it seems to me that they don't completely fulfill the criteria. You said your hands are puffy. I would wait until you see the skin thickening because that is a major criteria. I myself started getting puffy palms back in May. At the end of May I noticed that the skin was thickening on the lateral aspects of both hands and appearing shiny and leather like.
Obviously, we do share common characteristics. Especially the circulation problems in the hands that you described seem so much like mine. My palms would turn red upon pressure from holding the steering wheel of my car and hurt. The shininess would come and go on the palms and fingers. It seems to be vascular related, possibly associated with the thickening of blood vessels that occurs in the disease.
Those symptoms started back in december. I never expected the palms to then become puffy and the skin on my fingers to thicken. In your case the puffy hands is only the beginning. The progression of the disease may be similar or apparently different in in terms of rate and appearance of symptoms when compared to mine. The immune system behaves so much differently in everybody.
I think you're still stuck in that puffy hand phase. Its apparent that your tendons and blood circulation of the hands are both affected. It could be the beginning signs that the thickening is taking place. Its all part of the thickening phenomenon. Its only a matter of time that skin will soon start to thicken in the hands.
It looks like that to me because that's how my symptoms began before the thickening started. It only took a few months at the onset of those symptoms before I noticed the skin on my fingers thickening. The ANA will eventually become positive, possibly years and also the raynauds may appear later.
So my advice is to wait it out. The disease seems to be occuring very slow in your case. Like I said wait for the skin to thicken because its a major criteria for diagnosis. Check to see if those areas that appeared shiny on the fingers are starting to thicken and feel leather like as well as other fibrotic changes elsewhere in your body. I think that's a good time to go to the doctor. Please keep in touch and let me know how your symptoms are progressing. Good Luck and take care.
Posted 25 June 2008 - 12:44 PM
the skin on the inside of the palms is definitely leathery like...no doubt..feels dry and leathery.
Also the touch sense is different ...for some time it felt like I had superglue on the finger tips especially thumb and index and a bit less middle finger...
And after a while I noticed that the skin in the bathtub on the finger tips behaved even more wrinkly and then it also began to scale when dry...also if I have a wound it becomes hard afer a while and if I peel the hard stuff off, the next hard stuff appears and fills the wound (looks like skin, but is harder and you even feel it).
So skin thickening on the inside probably has started (it started with tightening about 9 month ago and went on with scaling about 5 month ago and it became worse....right now, after having pulled the excess skin off the finger tips...they almost feel normal (or I have gotten used to it...just they feel like they have less grip as the finger print pattern seems to have lessened, like somebody else described here...having troube holding cards (no I can still hold them...but opening a bottle of orange juice with a screw on top has become more difficult due to loss in grip and that is not he muscles..it is the texture and surface of the skin...)
The skin on the inside it shiny...no doubt...and it is puffy, not doubt (ring test...)
Well what ticks me off about this, is that it for sure would be helpful to try to stop this disease BEFORE it starts attacking more seriously and not once even I as a technician can diagnose it...
Then, what do I need a doctor for? With the ARA criteria, anybody who is familiar with this disease can immediately diagnose it....that is no art...and you definitely do not have to go to university to diagnose it with such criteria....
I am sure, that some people who would more careful listen would find it much earlier and then (closely investigating such suspected cases) would also find early signs in blodd or whereever...but if they refuse to look....they will never find definite early signs. And that is horrible.
I do NOT want to wait until my engine dies to find out it died (that I will then find out by myself)...I do expect (yes I am an engineer and I therefore do demand this)...that a doctor finds out from much earlier signs...I also have to find failures from very vague symptoms and descriptions and I have to ask the right questions to get my hunch and then I go and prove or disaproove and find the truth...but here we deal with lifes and not with chips like in my case. And if people do not understand that they have choosen the wrong job...(well there is funny enough one doctor on the German sclero site and she has similar problems and complains about it...and admits that this is a horrible system for such a disease).
I do not want to praise my profession...but I think the way the doctor profession acts here is pittyful.
Unfortunately lifes and families are dependent on this. (in my case too....(car chips)...and hence we would NEVER EVER act this pittyful) (sorry to say so, but that is how a techinician and engineer feels about this and it is the truth). If you do not find ANAs early in so many cases then it is possibly the wrong thing to look for as it is only a sideeffect. I do not have to look for a broken engine to find out it is broken (and that is how ARA criteria with respect to scleroderma are defined). If my lung has gone down the drain, do I need a doctor to tell me...or if my hands are crippled and what is he going to do about it in that late stage...? (nothing other than trials).
So why not investigate it early when there is still something to be stopped...but then you have to be lert to early signs, monitor possibly cases that urge a doctor that it may be this...and after 2 years VERY close monitoring you will either know it was the onset of sclerorderma and you will have learned a lot new or you will have identified a hypochondriac...both are fine...but not doing anything definitely is the wrong thing when you want to find out more about the early signs and how to diagnose...that is what I complain about...what else do you need: thight, shiny leathery skin, strange nails bending like clawas with splinter hamorages, changes in facial expression (parenthesis have almost gone around mouth...) strange feeling of forehead skin, GI problems, dry eyes and burning eyes...burning mouth and tongue, spine problems, tendon problems, sometimes slight arthritis in the hands, sicca,....and before 1.2 years I was perfectely OK...so now tell me I do not have a AI disease....? Do I need a doctor for that. If your engine is not OK you also know as the sound of it is not OK..would I spend my time on such a forum if I did not clearly feel something is severly going wrong....so why not once in a while listen to a patient and be alert (why is this so hard for doctors?). I mean if we get a chip back broken we investigate it and we take care of it, so that we can actually investigate it so that we can prevent the same problem of ever happening again...so it is actually worthy a very good treatment...so that it does not die in the investigation...as we want to find out what is wrong with it rather than killing it.....now compare this to here (and we are talking human beings here...what is wrong with the oath that doctors swore...what is wrong with this profession? Just trying to make sure money?) Pittyful (sorry to say so..but it is the truth if you come to think about it).
Posted 25 June 2008 - 05:58 PM
I remember when I first saw the rheumatologist he didn't even bother to look at my hands when I complained about the pain. He immediately insisted that it was related to a pulmonary issue. I went back to the pulmonologist and it seemed like he didn't have a clue of what was going on. He simply said I was feeling weak and tired because of a lack of exercise. I know the difference between feeling tired from a lack of exercise and feeling tired from something going on systematically. I didn't bother to go back to him. I know he was frustrated in dealing with me so I just gave up.
I understand how you feel about the situation. I'm going through the same exact thing.I know it would be nice to find a doctor that can diagnose it early. It would be nice to treat it early if it is systemic sclerosis. I just wish I can just find the proper treatment and get rid of all the pain.
I am going through so much pain everyday that I feel like I'm dying. I feel like the worst has yet to happen. Its impossible to get on with the day and do something productive. I want to live my life normally like anybody else.
A lot of people complain about having the flu.They complain about missing work,wasting the whole day and feeling so ill. Imagine feeling like that everyday for a whole year. My whole day is spent in bed and fighting off the pain. I never considered my health to be an issue. It was the last thing on my mind. Now its the only thing on my mind.
My advice is try to find a doctor that is patient and takes the time to listen. Not just someone who takes five minutes to see you in his office and deals with the next. Sit down with him and let him know what you're going through. Make sure he does a thorough physical exam. Be prepared and jot down all your symptoms before you go. And take all your previous lab reports with you. Also,don't tell him you think its scleroderma the first time you see him. A lot of doctors don't like that you come up with the diagnosis on your own and will immediately think you're a hypochondriac.
You're doing the right thing in going to the specialist in two months. I hope you find the right doctor. Hopefully someone skilled and experienced in treating such disorders. But most important someone who is determined to find an answer no matter what it takes.
Posted 26 June 2008 - 06:18 AM
I've been away awhile. I completely agree with anonym - the part about getting diagnosed early so that the doctors can slow the progression of the disease or put it into remission seems so very important. My question is: what can be done to slow it or put it into remission? The primary care physician that I saw and told me he didn't think I had scleroderma said, "Besides, if you had it, there is no treatment for it". What could I say to that?
Posted 26 June 2008 - 08:44 AM
My son, who is 20 years old, developed esophageal dismotility, restrictive lung disease, loss of vocal cords, 20 # weight loss, and major fatigue 18 months ago. He had a positive ANA (speckled pattern, diffuse) and a positive Anti-RNA Polymerase 1/111......along with a very high sed rate of 94. He still doesn't have the 'official' diagnosis of Sclero because he doesn't have the skin issues or Raynaud's.
Having a positive ANA really doesn't make or break the diagnosis. He was also seen by a sclero specialist.....not just a regular rheumatolotgist. His diagnosis is UCTD and he has been doing fine since being put on Plaquenil a year ago June.
Take care, Everyone.
Posted 17 August 2008 - 11:04 PM
just an update...I went to the German Clinic of Diagnostics...so far they did not really find anything, other than supposedly protein in the urine and white platelets in the urine (but they had me scheduled for many checks with many doctors, just not the urologist, so that this will only be worked out on my final visit with them mid of September. I know already, that heart and lung seem to be OK. The Dermatologist exam unfortunately was not so thorough like all the others...and the rheumatologist also only found some spondylosis of the spine and nothing else.
I did double check the protein with a test strip myself and that one seems false alarm. Also the CRP was slightly high (0.7 instead of 0.5)...but my wife (who was a nurse once) thinks this could be also due to having had a cold at that time...(which I had). But where do the white platelets come from if not from the kidneys (kidney involvement?...which would be not too uncommon for men and early in the disease).
On the other hand my finger especially of the right hand (especially index finger) become more and more puffy, especially in the morning or late nights. Hard to bend them then. Skin is feeling very smooth on the fingers...way too smooth (due to being very dry and due to fingerprint loss).
I also finally found a pic of what I have experienced last late winter, on the Dermnet site.
That is exactly how it looked...I had it about 3 times and in less severe cases, there were only tiny red dots (lots of them) close to the end of the fingernails...I guess if there are too many in one spot, that is when it starts becoming inflamed.
I am almost worried, that again even this specialist clinic will not find anything yet...I do not know how much longer I can stand the psychologic pressure of being treated like a hypochondriac and then knowing / feeling every day that something severe is not right and that it is almost with a 99% certainty systemic scleroderma (if it was limited, I should have Raynaud's, I guess for a long time already).
Dear Manny, luckily no skin thickening yet...unless whatever I feel in the fingers and palms is already just that...
Posted 18 August 2008 - 10:54 AM
I have limited Sclero/ CREST and I have no raynauds at all. It's unusual, but not unheard of.
I have the C , E and T of Crest.
I hope you find some answers soon.
Posted 18 August 2008 - 12:15 PM
Sorry for the frustration of lack of diagnosis. Nothing is worse, not even being told you have SSc, in my opinion. When the rheumatologist told me it was SSc and even though I knew what this meant it was preferable to being given the big I don 't know what's wrong with you.
I have atypical diffuse cutaneous systemic sclerosis and a year after diagnosis still have a negative ana. My symptoms came on thick and fast from Feb to Aug 07 by which time I could hardly walk. Little flexibility in all joints, none in wrists and ankles and curled hands and Raynaud's although I was oblivious to it. The skin from my feet all the way up to my abdomen was thickened as was the skin from hands all the way up to shoulders. All this in 7 months. A year later I now have bowel issues but nothing else yet. Even though I have a diagnosis no one can tell me with any real certanty what will come next, I now play the waiting game.
There are 2 types of systemic sclerosis limited(also known as crest but not everyone with limited have all the crest symptoms and may also have internal issues) and diffuse. Limited usually presents with Raynaud's, hardening of skin on hands, sometimes forearms, feet and lower legs. Almost always there are changes in facial skin and appearance. Gastro problems are common and other organs can be involved. Diffuse effects skin not only on hands, forearms, feet and lower legs but upper arms, thights and trunk. There is often systemic involvement effecting internal organs. Again this is textbook stuff and in reality different people can have different symptoms and combinations of symptoms of the illness.
The difficulty as you know is that no single test can confirm scleroderma.
While you struggle to find a diagnosis please continue to use this forum to vent. Incidentally I was initially misdiagnosed by one doctor who said I had leaking veins(has got to win prizes for most weird misdiagnosis) and then by 3 dermatologists who said it was necrobiosis lipodica, a diabetic condition.
P.S. Would it help your cause if you took some sclero info such as leaflets that reflect your symptoms with you when you see a doctor next?
P.S.S. Stape, a doctor told my sister that there was no treatement for scleroderma(what a way to be written off) she corrected him and pointed out there was no cure but there were plenty of treatments for me.
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Posted 20 August 2008 - 05:18 AM
It's nice to hear from you again. Thanks for sharing an update. I was hoping this time you would get more promising answers in your visit to the doctor.I know how frustrated you must feel not being diagnosed.
To give you an update of my symptoms I'm going to keep it short. Nothing has changed from my earlier symptoms,but this time I can pinpoint exactly what's going on.
First, the pain on the palms and soles seem to be pressure related. My palms hurt everytime I hold or lift something. They stay red and don't blanch immediately like they should after holding something. I guess they stay red because the blood stays trapped in that area of the palms as soon as pressure is applied to it. They are swollen under rest, but as soon as I try to lift something they become even more swollen. The same exact thing happens on the soles of my feet. It occurs more often while I'm walking. I imagine the pressure applied from walking cause the pain on the soles.
One more thing regarding my feet is that they hurt so much every time I wear shoes or sneakers. Feels like as if they were too tight around the toes. I'm wearing slippers and sandals everywhere I go now.
I can't blame the pain on the palms and soles entirely on pressure. My hands and feet occasionally hurt a lot, burning in nature. Sometimes, they hurt just from sitting and not moving at all. The pain is much worse during the night and especially in the morning as soon as I wake up. Along with the pain I feel extremely weak and tired. I get this achy sensation like as if chills were running up and down my body.
I also noticed that there seems to be alot of excess amounts of skin on the palms. That may be the reason why they appear swollen. If I bent my palms inwards I can see excess skin on the palm hitting the space where the fingers begin on the palms. It appears exactly like as if I had Dupuytren's contracture or a better example would be palmar fasciitis.
As far as the thickening goes I have a band of thickened skin on the lateral aspect of my first finger after the thumb. The band reaches from the tip of the finger to the end of the knuckle. It only appears on the lateral side of that finger and no where else. The same band like formation is on the same finger of my other hand and on the same lateral side. It appears very shiny and feels leather like when I touch it. However, the other fingers don't seem to be affected.
Lastly, I having a lot of issues going on with my mouth. Lots of lower jaw pain. My mouth symptoms appear somewhat like that of of temperomandibular joint syndrome. I can feel a lot of restriction and stiffness when I try to open my mouth widely. If I do it repetitively I don't feel the restriction and can open it widely easily. Its only after my mouth is rested that when I initially try to open it in the first two tries I can feel the restriction and stiffness. Its kind of like a myasthenia gravis type of symptomology.
You are quite fortunate that you don't have any internal organ involvement. I can assure you that once you have it it can be quite severe and is associated with a poorer prognostic outcome. I myself have been dealing with severe pulmonary issues. It's been a year already and after being on and off of prednisone and my lung disease is still there. It seems to be an active process of alveolitis.
Again I want to remind you that it is really premature to make a definitive diagnosis of systemic sclerosis. We are not doctors and can't really make a diagnosis simply upon what we read on the internet. It could be several things. In my case I am now suspecting a paraneoplastic syndrome.
You are doing a good thing keeping a close eye on your health. It's very important to be aware that there may be something seriously going on. However,I wouldn't stress myself out to much. There's really not much you can do after dealing with so many doctors. I would let the disease take its course and when its obvious then the doctors will figure out what it is. The only thing you can do at this point is to treat the symptoms with the medications your doctor prescribed to you. Try not to think about it too much either. Its only creating a great deal of stress and that is making your situation worse. Good luck and please keep us posted. Manny.
Posted 20 August 2008 - 05:26 PM
After hearing your stories I am horrified. Why should we have to prove to the medical profession that we have a disease? It is their job to diagnose when we come to them with our symptoms! I left one rheumatologist because his idea of medical care involved examining me between telephone calls and prescribing for me the most cutting edge drugs - they were not necessarily for scler.
My new rheumatologist says that if a new symptom develops that he is not doing his job - he wants to head things off at the pass so to speak and that is why I get tested yearly for heart, lung, and other complications and he monitors me closely. It is a pain in the butt to have to do so much testing, but I know where I stand and I feel very sure that I will know if things are changing very quickly.
I have Raynaud's but the remainder of my issues are internal. I do have a high ANA and have had one before I came to see any rheumatologist, but I am appalled at the treatment you have received. Perhaps it is not so important to give your conditions a name. The important thing is to get treatment, to be treated with respect and to have each of your symptoms considered seriously. The name of the disease is irrelevant, the treatment plan and outcome of the treatment is what counts. You need to be made as comfortable as possible and to be treated in such a way as to monitor and hopefully prevent any complications.
Good luck and I hope you find comfort and good quality care soon!
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Posted 20 September 2008 - 12:36 PM
first of all thanks for the replies and sorry for my late reply...but I was on vaccation with my family and I made it a long one...who knows what will happen so....as long as I can....I enjoyed 4 wondful weeks...3 of them in south of France.
Manny, your hand symptoms really are so identical to mine from what you describe....in the last 4 weeks of vaccation my first finger also feels more and more hard and thicker (and I can peel the skin off in the hot shower and then the fingers feels much more normal in sensation). I guess lateral means "inside" and that would match 100%.
The skin is very dry, smooth and shiny on the first finger (index finger is the english expresion, right?). Also the thumb is pretty strange in feeling...all others are much more OK still....also if you slightly try to shift the skin (e.g. from the top of the finger towards the knuckle on the lateral side) then the whole portion all the way to the knuckle is affected as the skin is so stiff...on all other fingers the knuckle lateral portion would never see a movement, as the skin simply is elastic enough to cushion the movement.
It is also very strange, that even moisturizing cream does not really make it into this harder outer shell of skin...only once I peeled it off in the shower partially this got better...but it comes back quickly.
Also I notice on two previous wounds around on thumb and one index finger, that the skin around it now is much thicker there and again I can peel it off...but it comes back much too thick a few days later...and as it is close to the outermost lateral joint you can even feel and see that thicker stiffer skin as it "refuses" to bend where it should...
Well here also an update: I had my second visit to the German clinic of Diagnostics in Wiesbaden....the follow up Urologist visit (remember protein and white platlets in the Urine and as I got to know only know also one prostate cancer marker slightly increased) took place. He was a pretty good guy and found an inflamation of the prostate which supposedly is still caused by my original Yersinia infection (which I most likely caught 1.5 years ago and which may have started all this...it was once already found after 0.5 years and supposedly treated with Antibiotics...Doxycyclin specifically for Yersinia....however according to this doctor now, that antibiotic is not very well reaching the prostate...).
Supposedly all my condition could be explained by this...??? I doubt it though....looks much more in line with early edema phase of diffuse SSC then a Yersinia infection. Nevertheless the infection is still ongoing according to him (saw it in the high resolution 3 D color ultrasound and also the blood shows antibodies ....the antibodies were found many times before and except for the doctor who first treated it one year ago all others claimed that from the values one can NOT see if active or past infection ....however this one clearly once more said, that the value as they were show it is still active....
So it needs treatment again....why the guy that treated it first did not check that it was gone is puzzling me....and actually he did after 3 weeks of Doxy....and the values were like before (and like right now) and yet he did not see this as a reason to see a failed treatment...so before he saw enough reason for an active one which needed treatment...afterwards he did not see a reason to continue...and now the same values are a reason to do something more serious...?
There you can see smurfette how much you can trust the medicine profession....I have pretty much lost that trust...and mind you we are talking about the major clinic in Germany for diagnostics and Germany is not a third world country but from a medical point probably on the top.
Nevertheless my final visit to the Dermatologist there brought also no further news...I talked to her as well and she also thinks, that all the skin and spine stuff is related to the ongoing infection...I hope she is right as the edema of the fingers and also the back of at least the right hand is definitely getting worse and is much more consistent with diffuses SSc...
But: no ANAs, no ENAs, no Raynauds....and there it becomes much more difficult...I guess that is what made the difference for you Smurfette...ANAs...
And I disagree with Manny a bit....letting the illness take its course is in my mind the wrong thing to do....after all I just read an article here on this side from a major expert who complains that women are diagnoses much later than men, as many times men are taken more seriously and hence doctors search more rigorous as for women it is attributed more often in the beginning to psyche...however that article states that it would be so important to diagnose quicker, as the major skin thickening and organ stuff happens in the first 3 years and women take mostly 6.7 years and men 3 years...but the earlier you catch it, the earlier you could try to stop the worst stuff....so I do NOT WANT to wait....I want somebody who finally takes the skin stuff serious and maybe does a capilaroscopy or a skin biopsy....lets assume I am one of the 10% not ever having Raynauds or one of the 5-10% not ever having ANAs....does that mean I first need crippled hands or a lung that does not work before anybody starts to diagnose me and help me? I rather prefer to have it caught early and there are tons of signs that I can clearly see and read in many publications that 100% match my strange conditions...so why can't there be sclero specialists who look closely at such subtle things? Nobody so far ever did....the dermatologist at least admitted this time, that my fingers are swollen and even the skin breaks on some events due to this...and she admitted that the ring by far did not fit anymore..but she just admitted that and attributed everything to the Yersinia infection ongoing in the prostate...never heard of an infection causing all this....is this not a bit too easy?