Playing Doctor Again
So I’ve had these strange things going on with my fingers for the last several months. I know I need to go to the doctor and I will. You have to understand how sick of going to doctors that I am. At one point, I was seeing seven doctors, visiting them every one to two months so I’m doctor avoidant these days.
A few months ago, my right index finger developed this odd indentation. Then it went away. Finally it came back though. This happened several times. Finally it came back, left what appears to be some permanent damage to the skin. Its some what scaly some what scar like. The full article includes pictures.
Now it is happening on my right index finger too and has been for the last couple of months. The doctors have always gone back and forth on if I had lupus or not, except during the time when I had seven of them. I was sick enough then that they knew something was wrong but they just couldn’t find anything other than lupus and I had the lupus rash on my face.
I didn’t know it at the time but with Scleroderma there is a syndrome called CREST and I meet the criteria for that as well. I’m going to post some pictures so you can see what is going on with my fingers and maybe someone can tell me one way or the other.
This is from my right index finger. This comes up and then completely goes away, not leaving a trace. It looks and feels like calluses around the indentation when it is present. Jessie agrees with my description. My left index finger use to do this but now it just looks like this all the time expect right now its longer than it usually is!
This one gets a bit itchy from time to time. It kept getting worse until I hit it with my Desonate Gel and now its not so bad. This morning thought it is clearly longer, reaching the last joint near the tip of my finger and looks like patches of calluses. It looks considerably different from this at the moment. Not scaly at all, more like plastic!
Finally on my right hand, my middle finger has some patchy calluses on them. They are not very pronounced and I wouldn’t even notice them on this finger if not for the issues going on with the two middle fingers.
Anyone ever see something like this? I had one patch of psorises on my elbow but a couple of hits of the Desonate cleared that right up. Could it be simple dermatitis. Seems like lupus could cause that to me, after all its just inflammation of the skin and that’s what lupus is all about.
Lupus Vs Scleroderma or Both?
When I read about Sceroderma a few months ago, I was kind of angry that no doctor ever brought this up. When I read about CREST it seemed so to me. I don’t remember now exactly what CREST stands for but its about what goes on mostly in digestive track including pain in the esophagus that feels like a heart attack which I’ve been complaining about for many years.
I also test positive for Anti-DNA which is a test I thought always meant lupus but now I read people with Scleroderma often test positive for that as well. For my lupus has never been typical. Scleroderma usually bring skin problems but much more severe than I’ve had. It doesn’t always do that though, sometimes people get very sick from this and never show any skin problems.
Anyway, all this bothered me pretty strongly for about a week and then I just said it is what it is and whatever comes my way comes my way. I’ve been using my CeraVe lotion more. It helps a lot on my fingers and my face. I kind of blew the doctor off when he told me to get it but after using his samples I could see it really did help. I’m bad about forgetting it and I forget to put sun screen on my hands too.
I’m going to try to go see a new doctor this coming month. Budget constraints are an issue. I have the money but do I have enough money to go on my required trip out of the country. I don’t want to spend anything I don’t have too until I know that for certain. Besides, my incoming monkey needs to go to the vet more than I do. LOL
Tagged with: Lupus • Lupus and I • Scleroderma
Filed under: Lupus • Scleroderma
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Paul,
Glad you’re here.
My diet may be the source of the problem. What do I do though, eat things that make me gag? I don’t know how I got this way but I have. Did Mommie make me eat things when I was young and it scarred me? Or is it that I have a sense of smell that is all fouled up and has been since birth. Who knows which is true.
I tried to take some pills a few years back, looks like a good company, friends talked highly of it. It made me sick after a few days. I’ve always believed that our body signals to us what it needs and it signals to me that it don’t like things that most people do. Why? That’s the real source of the issue.
Yeah, I know more about autoimmune disorders than I care too. My immune system has been off since I was five though. Bad infections every summer in sores at that age.
When I was 18, strong as a mule my skin was turning yellow, that was the first time.
Bursitis at 16. Sometimes its not the patient. Perhaps, just perhaps the body ends up this way because of the diseases.
It makes sense that these chemicals would do odd things to our bodies because we didn’t evolve with them. But there is no reliable scientific evidence of such.
Telling me to eat vegetables is not going to work, I can’t, I throw up when I try and when I take them in pill form I get sick.. I what I took was from a company called Greens.
It was very expensive and I can’t afford that on a retired guys income on top of that.
From the link, it appears you’re selling the same kinds of things. You know that has to cause a huge dose of scepticism on my part. I haven’t been there yet but you’re going to be selling things, no? I will check on it.
I walk two miles a day three to six times a week on average. Its getting pretty hot here now and the sun is really hard on me. I’m going to join the beach club next week if at all possible so I can go swimming there. Even better exercise and more fun too. I’m even getting an underwater camera, should be able to get some great pictures that way. I may not have the money to join the club as I have to save money. I’m in a bad spot right now since I wiped out my savings. I may have to keep walking.
Since the fourth grade, a day of play in the sun would often lead to strep throat the next day.
I am working on improving my life style. It sounds like you have jumped to a lot of conclusions, you see a fat guy and assume I’m not exercising and that’s just not true.
Stress I think is the number one killer myself. Stress is what made lupus finally serious enough to diagnose and almost kill me. The vasculitis nearly took me out.
I don’t have a problem with what you said. I think it is short sighted and possibly motivated by profit motive. I think you believe what you said and I think there is some truth to it. I do not accept it is my fault. I do accept I could have done things to make it better for 40 years and I didn’t.
Okay so that’s where I am now. I’m doing what I can. I’m not expecting any miracles and anyone that says they have them, I say they are snake doctor. :) I do not eat enough to be as big as I am, PERIOD. My lab test do not confirm that. In fact, I have had my thyroid to go high to the point it caused me to tremble and that did show up in blood work. Then it just went away. I lost 20 pounds during that period. I kind of wish it would come back. :)
Depression has plagued me a good bit of my life and that’s contributed to the problems. I’m trying, I’m doing better than most people give me credit for though.
Hope you keep coming back!
Paul, you can post here but I will call you on things. Did a little research on Trinity College of Natural Health and it has less than a steller reputation.
I strongly advise people to read: Nutritional Quack Watch
Also Google the following phrase
Trinity College of Natural Health Fraud
I remain unconviced either way. I’ve read enough about Eastern medicine to believe the west should use more of their methods.
Their big push is on the Cancer word though and that smacks of marketing through fear. There was cancer in the 1800′s, perhaps not as much but then people lived to be 45 and died from yellow fever before they were in age groups that most often got cancer.
I haven’t seen anything like that at all. Of course I don’t work in dermatology. The only skin pitting I’ve seen were with patients with heart failure. Pitting usually are found in the lower limbs, and are referred to as “pitting oedema”. Is it possible your meds. are the cause?
Heart failure would be very bad indeed.
I don’t think I have anything like that there. I will get it looked into soon. First time I saw it, I told Jessie, I’ve got a bad feeling about this. But I hoped it was ringworm, which I’m sure you know is just a fungus.
Hope has nothing to do with vasculitis!
I think it is Scleroderma which often is diagnosed AFTER the “victim” develops skin “lesions” which are caused by the over production or maybe the over deposits of collagen.
I read where one person was talking of having white patches on their arms, which I have. I had so many infected sores growing up though I thought that’s what caused it. Most of those where on my legs and my legs don’t look like this.
I really think the doctors might have suspected it and just never told me. If you look up Scleroderma and CREST, it fits me rather well.
This required trip to Bangkok is really fouling up my spending and things I need to do as opposed to things I have to do.
I saw Alice Cooper’s pic in “Psych Moments”- it’s a real hoot!! :)
:) Where did you get that photo? It fitted really well with the article LOL! :) :) Has Jess seen it?
I’m 95% sure that I took that photo at a concert in 2002. If its not mine, I have some that look just like it. It was easy to get front row seats in the Memphis area for Alice Cooper at the casinos. Just get them as soon as they went on sale.
Alice stopped going there after that and most of his indoor shows had privledged seating for $350 and up near the front but usually also included a meet and great. I suspect his personal assistant was behind that change.
Rusty,
I have pictures of my fingers when I was initially diagnosed with Crest and the complications I suffered.
I agree with the person who said, “you can have more than one atuoimmune disease at a time.
Ramona
Ramona,
I know and I know its hard to diagnose. I’ve got so many symptoms of CREST I don’t understand why that was never brought up to me. Its freaking obvious. But, I could still be wrong.
Ramona, do they look anything like yours?
I’m hoping that if I have it, I’ve had it for a long time as my reading indicates that Scleroderma is usually pure hell for the first couple of years but then gets better.
I think the extra sun may have brought out the skin manifestations, not that I’ve not always had all kinds off skin problems.
I guess I should google pictures of Crest. Wonder if I’ll find the American Idol host instead. LOL
Well, I searched for Scleroderma pictures and of course, I got pictures that were extremely scary but also some that looked like what I have going on. I also have a rheumatoid nodule that confused the doctors a little bit way back in the day.
Hey Rusty-
I have a blog where I discuss and welcome various health problems. The first thing I think of is a cleansing protocol-the simple parasite cleanse followed by MMS, and then a colon cleanse and nutrients to give the body what it needs to heal. When we eat a good diet, exercise and get some sun, we can be proactive in changing our health outlook. One nurse said she had eaten her way out of cancer, arthritis, etc. I posted a Medication-induced Nutrient Deficiency sheet that may help, along with a disease/cancer healing protocol. I can send specifics on skin problems and lupus if you are interested. My best. Pamela
The problems I have with these kind of post is that never come from someone that isn’t selling these products. That makes me doubt it completely.
There is another problem, a few years ago, one so called expert told me that the sun was always good for you. No expert would ever say that, the sun is very bad for some people.
I’m not going to be buying your products nor would I recommend anyone else do so. I hope you’re not saying people should forgo their regular medical care for this kind of thing.
Ijust have become too sceptical of anyone selling product like these, especially when they are doing so on the net.
The limited form of scleroderma is often referred to as CREST syndrome.[1] “CREST” is an acronym for the five main features:
* Calcinosis
* Raynaud’s syndrome
* Esophageal dysmotility
* Sclerodactyly
* Telangiectasia
Patients with CREST commonly and slowly produce a pulmonary artery hypertension which can result in heart failure. Blood vessel thrombosis and arteriosclerosis has also led to the necessity of amputation of fingers. Open leg sores can result from burst blood vessels and thin skin, leading to chronic infections. Other Symptoms of CREST patients can be exhaustion, weakness, difficulties with breathing, dizziness and badly healing wounds.
The term limited is used but is misleading. CREST can have all of the internal issues going on but the skin manifestation is what is limited, usually.
There is an excellent article on it here:
http://www.scleroderma.org/medical/crest_articles/weller_2004_4.shtm
Written by an RN :)
The limited form causes less renal issues but otherwise, internally its pretty much the same as the other two forms.
Now explain Espohageal dysmotility, sclerodactyly and Telangiectasia. :)
Calcinosis — I think this just refers to the build up of collagen? I THINK I have this going on. Causing what is seen in the above pictures.
Raynauds, no doubt about that one. I did get ulceration from it in the 90′s not too bad now.
Esophageal dysmotility — i have had severe chest pain since I was 9 that mimic that of a heart attack. Cardiologist suggested the pain might be from my esophagos
Sclerodactyly — Okay I looked it up. That appears to be what is going on with my fingers. Caused by number 1 above. I guess they are related.
Telangiectasia — well i have red spots like that. On lower legs especially. Was told that was from my old vasculitis. I MIGHT have this other places too. With so many rashes, its kind of hard to tell. LOL
Dignostic test include positive anti dna antibodies which I also have test positive for. There is one more test but I don’t remember what it is.
I probably have a combination of lupus/sceroderma but both are fairly mild in my case, especially these days. My doctors probably suspected it but nothing forced a diagnosis and it has been my obeservation, doctors will only diagnose what they feel they must diagnose in order to justify treatment of more potentially damaging drugs.
Now I’m just angry again. One rheumtalogist that I saw for a very short time said I have this: Rosacea which can cause Telangiectasia yet he still didn’t look into CREST. He put me down a lot.
I guess that’s why I’m hacked off. This seems so obvious to me now that I know about it yet the doctors were being closed minded that I was imagining a lot of what I told them. Well a couple of them did. Most did not. Those couple though, I guess they really got to me. One of them was pretty hard on me. Said I wasn’t trying. I felt like I was fighting very hard. I should go back to the US and smack him. LOL Get a glove and challenge him to a duel or something. :) Or perhaps Rusty, you should just let it go! :)
Doctors are only human and make mistakes too. When my daughter was 7 years old, she contracted Osteomalitis of the foot. I knew it was Osteomalitis because of her symptoms. My Doctor said she’s only had the flu. I gave him the benefit of the doubt, but my gut insticnt told me he was wrong. 3 days later my daughter was worse, I demanded x-rays and a blood test. X-ray was normal, blood test says her blood count is out of whack. My Doctor agreed there was something wrong. I said give us another test. He actually ask me what test I want seeing the x-ray was normal. I said give her an ultrasound of the foot. By then my daughter’s foot pain was 2 weeks old. I was terrified that if this was not sorted, she would lose a foot. I just kept hammering to him to do something to give us a diagnosis. He disagreed with my suggestion of Osteomalitis. The ultrasound showed massive inflammation on her foot. I got a referral to a Paediatrician. He agreed with me that it was Osteomalitis. My daughter was admitted to the hospital as soon as we left his clinic. She was there for 2 weeks.
Sorry, says you posted this three days ago? I’m confused. I have looked for new post. I guess I looked in the wrong place. I need a tool to help me keep up with post better.
Ouch. In the US she would have been going to a paediatrician to start with! I don’t know what that illness is, first I heard of it. Good thing you know about it!
I don’t have a problem with a doctor making a mistake. I love to hear a doctor say I don’t kknow.
If I’ve had CREST for 20 years, t hey were alseep at the wheel if they didn’t suspect it. I didn’t have the type of skin manifestation though. That’s just it, with CREST you don’t always get the skin issues.
But it doesn’t matter. I think at least some of them suspected it and just didn’t see any reason to give me yet another diagnosis that was even more scary than lupus. If I’ve had it for this long, then the worse is already over. I don’t seem to be getting seriously ill now.
Ostemyletis (I spelt it wrongly!) is a bone infection. If you are diabetic, you would be at risk too. You get it if you’ve had an injury which can cause bacteria to penetrate the bone. The main cause is usually trauma, i.e accidents. I suspected Osteomyelitis even though my daughter did not have trauma because she was always scratching her heels. She had eczema. So it was a combination of knowledge and deductions. What’s in your heel? skin, a bit of flesh and bone. Also paracetamol did not alleviate her fever, aspirin did. Now, aspirin is anti-inflammatory, therefore, she has to have some kind of inflammation. Yes, she should have gone to the Paediatrician straight away, but we have a system here where you need a referral from your family doctor first. You can’t just make an appointment without a referral. I got away with nagging our family doctor because he was actually a colleague! I think anyone else would have been just brushed off.
And yes, this was posted 3 days ago when I was on days off! :)
Again, sorry I over looked it.. We have a lot of readers, I wish more were brave enough to write more often. Could really use their help!
I haave several ways I could loose a limb. Raynaud’s but unlikely that will do it. Diabetes can do it through poor circulation, maybe that’s how one gets this bone infectiion, by exposing it from the skin around it dying due to poor circulation. I’m just guessing. I don’t know. Now it appears I’ve added sclerodemra to the mix. Hope I’m wrong about that though. I have enough problems :)
Rusty, I do think you may have CREST scleroderma. I have it. That redness of the bottom part of your feet, with that sharp line of demarcation between the red part and the normal color looks just like what I have going.
So, let me ask you some questions:
1. Do you have any red or purplish marks on your face or fingers
2. Do you get color changes in your feet or fingers with cold or emotion
3. Do you have any hard bumps under the skin that could be subcutaneous calcinosis?
4. Does dry bread or pills linger in your lower esophagus?
5. Do you have episodes of heartburn or gastric reflux?
6. have your fingers swollen any? – any ring size changes?
7. Do you find your arms are falling asleep at night a lot more than they used to?
8. Having problem with constipation?
9. Any chronic cough?
10. Any problem with burning, aching hands and feet? Pricking pains in them? numbness? paresthesias?
11. Tender lower legs?
12. Tendonitis?
13. Burning, aching spine?
14 Aching all over? Pressure points at night?
15. Sleep apnea?
16. Thyroid problems?
17. Dry eyes? Dry mouth?
Someone else told me it was simple dermatitis but I have dermatitis and it doesn’t look anything like this.
Its not on my feet but my fingers.
1. On my face, yes. I use to have bleeding under my nails.
2. I have raynaud’s.
3. yes, same thing as rheumatoid nodule?
4. maybe. lots of choking too
5. yes, have been taking zantac for 30 years. Also probably esophagus spams since the 4th grade. The pain is so severe I thought it was my heart but cardiologist thought it might be my esophagus, that it was not my heart!
6. yes, rapid change in ring size after marriage, could wear it
7. no
8. YES
9. problems here but not all the time. lots of infectious bronchitis since teens.
10. numbness in legs, paresthesias maybe. definite numbness in legs, and some to a limited extend along the outer edge of hand and up the edge of pinky (also diabetic)
11. Lower legs very tender in area of shin? Talking about that? My calves have hurt me nearly constantly for 30 years.
12. Don’t know
13. don’t think so
14 yes, sometimes i thought i might die but rest usually fixes it.
15 yes i have sleep apnea but I could never keep my cpap on
16 thyroid went over active a couple of times and then returned to normal
17 constant thirst even before diabetes, always have to have candy or something to drink with me. had my tear ducts plugged several times in the 90s. Not too bad now but I’m not as sick as I was in the 90′s.
I’ve read most of the above symptoms. What has been going on with my “chest pain” and my face should have been a dead give away on this. I probably do have lupus too but this disease was never brought up with me a single time.
Probably don’t have subcutaneous calcinosis. Though I did have high calcium in my blood once. I thought it was because I drank tons of milk but the doctor said it doesn’ work that way. Now I know why it concerned her.
That’s usually the case with my blood test, they may go out of normal for a bit but then they usually go back to normal. Meaning what’s going on is probably mild compared to what it could be.
I have a lot of problem with cyst though. Seems like sclermoderma could cause that.
It was the anticentromere B test that clinched my diagnosis as having CREST scleroderma. Why don’t you ask for that test? Mine was very positive and this test is supposed to be very specific for CREST. However, even if it is negative, you can still have CREST, for although very specific, it is not extremely sensitive. Ask your doc for the test, and if he says he does not want to do it because you don’t have an anticentromere ANA staining pattern, then you can tell him that only once in 12 years was my staining pattern anticentromere, and before and after that (many times) it was homogeneous and speckled. A recent Nigerian study showed that the most common staining pattern in scleroderma was speckled. Refer him to the study abstract at
http://www.springerlink.com/content/a5614831673422r0/. I, however, am not black, yet still had the speckled and homogeneous staining patterns. Out of many ANA tests, only once was it anticentromere and only once was it antinucleolar. All the rest were speckled and/or homogeneous.
having been followed for 20 years I’m more aware of testing positive and not being sick and testing negative and being sick than I ever care to be. LOL
Wow its been a long time since read anything on the different patterns, forgot all of that. i think I recall mine being speckled but barely positive and sometimes not positive at all. However, I’m often positive for anti-DNA. Most off my doctors say that’s a 100% positive test for lupus, but some say no. None have said it means nothing though. Some just say they don’t know what is wrong with my immune system. I think kthe doctors didn’t put the symptoms of GURD and auto-immune disorder together or if they did, they kept it to themselves.
I haven’t even seen a doctor since, I think October. At one time, i had seven of them. So I’m sick of doctors.
I’m in the Philippines now, medicine seems to be practised a lot different here.. I am lucky enough to have a dermatologist in town, I should go see him/her. I really don’t think this is dermatitis on my fingers. I started putting desonide on it. that changed it a bit but revealed that it has a stubborn, perhaps deep part too it. I hope its not scleroderma, its in a bad place if it gets bad. Its not flaky, it was a little before using the lotion on it, not now. It looks like a scar. I’ve got the white blotches all over my arms. I thought they were scars, have been there for as long as I can remember.
I think being treated like a hypochondriac so often has just burned me out on doctors. I will go and thanks for the information, I’ll ask the docs if they do that test here. Is there much they can do for scleroderma? i got the impression there is not a lot.
Well truly the only thing that has helped me is autohemo therapy.Free always available and perfectly sound in serum treatment reason and sane restorAtion of my defective antigen antibody confusion.It is hope in your body without feeling like they think your crazy or wrong,and it has and is working world wide.utube it first! Good luck and to all be well and hang in there!
I’m doing well but have been lazy lately.
I have no idea what autohemo is.
Hi Rusty,
I was wondering, did you ever figure out what was going on with your finger around March/April?
I have a spot on the side of my index finger that seems to be the exact same thing – started about a month ago with an indented hard/callus-like circular spot (approx 1/2 inch at widest point), is now less hard and scaly, but remains kind of “tough” and plastic-like, and possibly a yellowish tint I’ve seen in certain light. The only other thing I noticed was, within the 2 weeks or so before this developed, the skin in that area was slightly red, but because it is by side of the middle joint (where the bone is wider), I thought maybe the redness occurred because maybe I was holding something heavy that was pressing on it – there was no associated pain or discomfort. Also, my hands often have red areas/sensitive skin plus Raynaud’s, so not a big deal for me.
A little history: I was particularly interested in your status because I also have some autoimmune things going on (thyroid/Raynaud’s) and the rheumatologist believes it’s very likely there will more to come (based on nailfold capillary loop changes and Raynaud’s, which she says indicates some type of underlying connective tissue disorder such as Scleroderma, Lupus, Mixed, etc). Also, my primary doc had sent me to the rheumatologist in the first place after 5 lumps had developed on 3 fingers of my other hand, with swelling//redness/pain/difficulty bending, which he hadn’t ever seen (I’m starting to hate having things that makes the docs scratch their head and say “hhmm, interesting…I don’t really know what those are…” – although I do appreciate the candor, and don’t fault them for not knowing), along with color changes between the R and L/worsening of raynaud’s (deep blue/purple color changes). He ran blood tests that yielded a + antibody test, which the rheumatologist later dismissed as insignificant/unrelated, after running more specific tests which were normal. The lumps, which were NOT by joints (so not the type seen in RA or Lupus) had resolved by the time I saw her (rheumatol), and were not described well enough in the office notes. In fact, in her mind – I was referred to her for Raynaud’s – because she impressively dismissed both the disturbing lumps and + antibody test that my primary described as being “associated with vasculitis” (absurd: because she can’t see the lumps, read about them, and won’t hear about them from me, she just discards the symptom as irrelevant – when, by the time I called and saw my primary doctor, the “lumps” were significant enough that it looked like 3 swollen red fingers – and only upon close inspection, could you identify the individual lumps). (An aside – I now have horizontal ridges growing out on the nails of the 3 lumpy fingers, dating back to the time that the lumps developed). In my opinion, the lumps are/were related generally, as they developed at the exact time as the dramatic color changes, and because the pinky, which had the greatest # of lumps (3) of the 3 fingers, is the finger that she said had the most extensive nailfold capillary loop changes – “disorganized” while the others were just dilated or enlarged), She thinks, IF the lumps were related, I may not fall neatly into a single identifiable CTD (ie. mixed) (because she is leaning toward Scleroderma, but admitted lumps of the type described would not be a symptom of that condition),
Back to the current issue – the indented hard spot, had I done any kind of work with my hands and had it been in a vulnerable location, I would have assumed it was a callus – but to my knowledge, those don’t develop spontaneously, nor do they seem to be indented. After extensive searching, your site is the only thing that seemed to describe what I have. I am not actually worried about this spot – in fact, if this is all that happens, I’ll consider myself very lucky, but I don’t like unknowns. Also, if I could identify what this spot is and whether or not it is related to any of the other things I have experienced, it could provide clues to the bigger picture. I did call my Rheumatologists office about this and she didn’t think it was significant (at least from her assumption that I am “pre-scleroderma” – she said Scleroderma doesn’t typically start as one local spot), but said to come in if not gone in a week. Although it is not completely gone, I decided to wait because it’s small/not bothersome, I can show my dermatologist at my upcoming annual appt, and because, given her tendency to interpret things through the tint of her assumptions and “general rules” (which I never seem to fit within)…I figured it would be pointless.
Any update from you would be appreciated. Thanks!
Hi Sara, I deleted the first post, not a problem. I have a couple of stalkers harassing me so I have to moderate all first post.
I don’t know what this is on my finger but its getting worse. I’m going to get it check out soon, probably next month. So many needs and wants, so little cash. :)
I’m pretty sure what is going on with my fingers is inflamation of some kind. I smoked a cigerette or two and they get worse when I do. So I hope and pray its not related to my heart. A nurse told me she sees things like this with people that have heart failure but they were on the feet, not the hands. Nicotine causes inflammation.
Its possible it just some kind of fungus. I put some meds on it and it seems to have become slightly better.
I don’t know why any doctor would tell you the lumps are irrelevant. I don’t know what they are. I guess they must not be rheumatoid nodules or the doctor wouldn’t have said that.
It is unlikely they will ever diagnose you with anything unless you need stronger medications. They wouldn’t diagnose me until I required 90mb of prednisone per day. They diagnosed vaculitis for that and later added SLE (lupus).
Its really frustrating in the beginning as we want to know what is going on. My suggestion is to try to live your life as normally as possible. Avoid things if you find they are causing you problems.
The rebel in me came out. The doctors told me I didn’t have lupus so I went out and got in as much sun as I could. Boy oh boy did I get a nasty butterfly rash on my face that lasted for years. It burned. I did that a few more times before I stopped being stupid. LOL
I guess you’ve researched nails? Doctors can tell a lot by your nails but sometimes only a general overall poor health. As one doctor told me, we treat what we can diagnose, otherwise we watch it.
You don’t want to be on prednisone unless you need it. Its a wonder drug but it will eventually kill you if you take it long enough.
I hope you can find out what’s going on with your finger. Like you, I had a mild anti-dsDNA show up once, and also since then have been found to have mildly positive anticardiolipin antibodies, which can go along with Lupus. But I think the anticentromere antibodies are my main problem. The most recent test for them shows they have skyrocketed to unmeasurable values (over 8.0 where the normal is 0 to 0.9). On the very day that this second positive anticentromere test was done, I also had my first-ever (false)-negative ANA test. So it just goes to show that the ANA is NOT good at revealing the anticentromere antibodies. And unfortunately the anticentromere B test is NOT one of the tests on the ENA panel of tests generally ordered when the ANA is positive. Anticentromere has to be ordered separately. If you can get a doc to order this one simple test, and it’s positive, the docs will have to sit up and take notice, and look at the possibility of CREST more seriously.
So, although I have no skin hardening, I am now under the care of a scleroderma doctor. He’s diagnosed me with “undifferentiated connective tissue disease with features of scleroderma”. He also commented on abnormalities in my nailfold capillaries. He’s not just a scleroderma doctor, but also a scleroderma researcher, which means he is bound by the archaic criteria written in 1980 by the American College of Rheumatology for the selection of patients for scleroderma research. The criteria were never revised to try to detect beginning or mild disease, never revised to take into account autoantibodies, and don’t even mention the word CREST. My doctor, though, as a researcher is bound by these criteria, and so he identifies people who may be entering the scleroderma disease process, and may progress, by classifying them as he has classified me.
Recently, I commented to him that I’ve been huffing and puffing with mild exertion, and I’ve had slightly swollen ankles ever since my autoimmune disease symptoms first arose in 1985. He ordered a cardioechogram to ascertain whether the anticentromere antibodies are causing any heart problems. It came through that I have developed left ventricular diastolic dysfunction, grade 2. I did some reading on it, and found that scleroderma can cause a stiffening of the heart muscle via myocardial fibrosis. And that can give this very type of dysfunction. So now I’m wondering whether I’ll need to adjust my target exercise heart rate downward when I walk the new treadmill I’ve ordered for Hubby and me for Christmas! And I’ve asked this scleroderma doctor that question by email 3 times. And guess what he finally replied? “See your GP if any acute problems arise”. Oh, that’s just fine. I suppose if I fall dead on my treadmill that would qualify as an acute problem? I was so tempted to send that zinger back to him, but realized that some day this doctor may be my lifeline, so I refrained.
Hi Hallie,
I’ve not been doing very well. Feel way behind on my writing and responding to comments.
Some pretty scary test results?
I hope you’re doing okay.
Hi again, Rusty!
When my scleroderma doc wouldn’t talk to me about the dyastolic dysfunction, I made an appointment with a cardiologist. While waiting for the appointment I read more on it and found out it is classified as a “restrictive cardiomyopathy”. I scoured the web and found out all the things that can cause this. It turns out that the three most likely things for me were scleroderma, amyloidosis, and Fabry’s disease (genetic). All three of them also cause neuropathy, which I have in addition to the cardiomyopathy. And the amyloidosis can come from any of three routes: hereditary, or from monoclonal gammopathy paraproteins, or from a secondary reaction to either scleroderma or ankylosing spondylitis. Well it’s a diagnostic nightmare because I have the anticentromere B antibodies that seem to be associated with limited systemic scleroderma. I also have monoclonal gammopathy paraproteins, and my dad had ankylosing spondylitis, which tends to be genetic, and I think I’m getting that too. And there’s a whole complex of signs and symptoms that have come down to me and my dad from my patternal grandmother that resemble Fabry’s or hereditary amyloidosis.
When I finally saw the cardiologist he ran a metabolic stress test on me which showed my heart-lung function is down by 36% from what it should be for my age and sex. He wanted me to have a heart biopsy. “Wait a minute,” I said. “Why don’t we do some of the less invasive tests for these things first.” So he ruled out hemochromatosis (another possibility) with a simple blood test, and has referred me to have genetic testing for Fabry’s and familial amyloidosis. When all that is done, I will probably still have to have the heart biopsy, and I’m not looking forward to it.
And how are you doing? Better than me, I hope! :)
The pictures look like Scleroderma to me or rather Calcinosis..I suffer terribly with calcinosis…there is no help for it…only surgery has helped me.
I have had SD for 30 years myself…I am in remission.
That is just my opinion…what do I know? LOL…..
Hey Shirley,
Thanks for the information. I think your right.
It would explain a lot like the severe chest pains that the cardiologist said was not my heart. GERD with spasms in my esophagus the likely cause and they started when I was in the 4th grade! They said it was asthma, but I didn’t have shortness of breath. They just didn’t want to look harder and I guess not many doctors saw it. Surely my docs have been suspecting it for a long time and just didn’t say anything. I’ll get it checked into soon.
Hi again Rusty…I included my link to my story if you are interested in reading it. Scleroderma is a strange disease…they thought I had Lupus at first because of the severe fatique and I had the butterfly rash on my face that would come and go .Your fingers looked like mine did at first…it looks like a callous…..Your fingers look like they have small amounts of calcium in them right now.They say that calcinosis does not have anything to do with having too much calcium in your body…how do they know that if they do not know anything about what causes it in the first place? I was diagnosed around 30 years ago now at U.A.B in Birmignham ,Alabama . They NEVER put me on anything …none of the BIG drugs…they told me that the drugs could kill me so they watched me instead….I was terribly sick for about 4 years then very slowly got to where I could function but dear God in heaven…I went through hell on earth. Good luck!
You can get MCTD…. that is several connective tissue diseases and you will have symptoms of each one. Be strong! That is what got me to where I am today….
Plus a lot of prayer!
Hi Shirley,
I was always kind of surprised the docs didn’t give me that one.. Some docs say I have lupus, some say they are not convinced and one just said “your complicated.” LOL
I was a little surprised Ii never heard mixed connective tissue disorder (MCTD). They had to call it something when they put me on 90Mg of Prednisone a day, trying to keep me alive. :) It worked but the meds did enough damage too.
Most doctors will say if you test positive for anti DNA then you are 100% positive for lupus. And I have tested positive for that. I don’t know, they are the experts and they can’t agree but are always so sure, each one with a different answer has a different opinion they are so sure of. LOL
I don’t even care what they call it any more, I call it lupus because of the anti-DNA which I’m sure you know is different than ANA or anti nuclear antibodies but others trying to learn may not know.
I had my eyes plugged four times and they wouldn’t diagnose Sjorgren’s. (SP been a long time since i typed that word)
Maybe I’m just disgusted with the entire thing. :) Whatever, bring it on, I’ll deal with it as best I can. :) And I’ll likely whoop that mutts a@@.
I visited your site, I was going to flirt with you but you’re married, so I wont… or maybe I just did? haha. Just my strange way to try to give you a compliment. :)
Hope you’re feeling okay and glad you’re mostly in remission. I don’t think any of us are ever fully in remission. I think its more that the thing is not trying to totally bind us to the bed or kill us. I’m in remission too, as far as I’m concerned but it hurts like all heck when I walk, my face is falling off, and various things don’t work like they should. Yeah some of it is cause I’m over 50. grrrrr I’m going to kick old age in the butt too.
HI Rusty…you can flirt all you want to…that makes me feel good. Having all the problems that we have it sure does not hurt to feel good once in a while…so…thank you!:)
Actually Rusty…you made my day! LOL….
I am glad that you took the time to read my story. Dr’s do not like to commit themselves sometimes with a certain diagnoses.I am sure by now that you know that we have to be our own Dr’s sometimes. I agree with you that I don’t feel that we are totally in complete remission but some people say that they are! I think that the worst part of mine is over with unless it comes back out of hiding and it can! Severe stress can cause it. So if you have people in your life that cause you a lot of stress….WEED THEM ALL OUT! I have done that. Be good to yourself Rusty…take time for YOU…do what makes YOU happy!!
Do things for other people when that person appreciates what you do…
some people do not appreciate anything.
Mind over matter means a lot. Try your best to think posistive thoughts even when you feel like crap…lol…
Thanks again hon for making my day today. Have a wonderful day!
Shirley
You’re mighty easy on the eyes Shirley so flirting comes easy.. :)
And its nice to make someone’s day for a change, instead of making them mad. LOL
Is that Google Ad on you’re site, your ad? Of is the hosting providers ad?
If not, you need to move your content. I can help you with that. Check out my post on making money for beginners. I’m going to give people as much help as I can. FREE
Hi again Rusty! No…it is not my ad…I started doing web pages using 100 megs because it was free a long time ago after I learned how to do HTML….If I paid for it they would remove the banner …lol…I will check it out for sure…
Thanks!
Shirley
Shirley,
You can get a free and better looking website at http://blogger.com and then put your OWN ads on it. You don’t need to know HTML but it helps.
It wont cost you anything, it will look better and you have a chance to get started making some money. I’ve started a group on Facebook to teach people how to make money while goofing off on Facebook too.
Eventually, to make anything significant you’ll have to stop goofing off though. :) Well maybe, some people get lucky and just keep goofing off to make money.
I haven’t seen anything like that at all. Very interesting and usefull info)
Hi
I have the same thing with my fingers. It kind of goes away when I don’t wet my hands. Taking group B vitamins also helps a lot, and a good hand cream, the ones from Neutrogena or La Roche-Posay are very good. Sometimes I add a little vitamin E to my hand cream.
Hope this helps.
I have the exact same thing on both hands extending from the tip of my index finger to the tip of my thumbs. Had it for over a year now, worse in the cold. Hasimoto hypothyroid since 1983. Had a biopsy today and hope to know what it is in two weeks.
FYI: I am also a from Mississippi. Just South of Jackson in Harrisville.
Hi Regina, I’ve seen a sign for Harrisville, I think. But it has been 25 years since I was south of Jackson. :)
Not cold here, so guess it is something else. But, then, if it got cold here, mine might be worse. Yeah me too, over a year now. Doctor seemed to know what it is but didn’t tell me. LOL I sound have pursued it more. I will ask next time, what is it. lol He also looked confused. So? :) Typical doctors. Act like they know but look confused. LOL
Hi Rusty,
I got my biopsy results today. “Elastitic Marginal Plaques”, a slowly progressive but largely asymptomatic condition. Dr gave me some rx cream, have to wait and see if it helps.
Well good, glad it isn’t anything life threatening! Mostly cosmetic?
Even though both Lupus and Scleroderma are both autoimmune disease, they really show quite different characteristics. The facial signs in scleroderma are authentic and don’t exist with Lupus. While Lupus (not all the time) has the malar rash that starts in the cheeks and goes over the bridge of the nose. In scleroderma the skin of the face are like strethed and you can see facial changes in the nose and mouth.
You might want to do a little more reading. I found that it is quite common for people to have both disorders at the same time.
Not everyone with scleroderma develops skin problems.
Rusty,
Have you looked into antibiotic protocol (AP)? My wife is almost completely better from a horrible case of scleroderma by using AP. more info at http://www.roadback.org and at http://www.rbfbb.org. Also, email me at [email protected] for more info.
Jessie and I just looked at the pictures again for scleroderma. What has now developed on my fingers and toes very much resembles what we see in the pictures.
I have GERD since the age or 21, I have severe chest pain that resembles a heart attack but the heart specialist said he thought it was my esophagus and that is defiantly not my heart. I have raynauds but it hasn’t been a problem for years, sjorgrens (sp), positive ANA, positive anti-dna, splotchy patches that come and go, muscle pain and joint pain. Dx of lupus on and off depending on the doctor and sometimes what a particular doctor is thinking at the moment.
Does the difficulty in swallowing sometimes include choking, especially when drinking liquids?
What is on my hands is scleroderma, hopefully just crest but I also have something system going on. Lupus and scleroderma or just misdiagnosed scleroderma in the first place. I don’t now.