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Diffuse Symptoms and treatment


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#1 canon

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Posted 03 September 2008 - 05:19 PM

Can anyone tell me what the signs and symptoms of diffuse scleroderma are? Exactly how do they treat it when it happens. Either I'm not paying attention to articles when I read them or the writings are very vague. Are the symptoms different with everyone too with diffuse?

I understand the limited scleroderma. I understand with diffuse it can take up to 3 years before the symptoms rapidly progress.

It is the skin involvement that is confusing and Doctors really haven't seen many patients with scleroderma so my concern is could they be missing things? For example I was told a while back I had bilateral hip bursitis and given exercises which really did help. If it didn't get better the rheumatologist was going to shoot both hips with cortisone. It went completely away for awhile with exercises alone. It came back but different; now the skin and muscles from the hip to knee have a weird sensation like pins and needles with itching, burning and a tight stretchy feeling. Sometimes it is so sharp it brings tears to my eyes then it will be ok again for awhile. I'll forget to mention this to a doctorbecause the symptom is not there at the time of an appointment or the wrong doctorAnyway has anyone had this? Has anyone ever had one ankle swell without any pitting edema with it with superficial veins getting so red and inflamed looking but no pain? Well maybe just a little like a numb sensitive feeling in the skin? The doppler showed no clots in the leg. Well my doctors always look puzzled like they can not give me answers sometimes. Looks like phlebitis. I know we can't diagnose or try but what is this all about? Like none of us want either diffuse or limited scleroderma. So we just have to wait to see what happens in the next 3 years and then some because it can just turn on you at any time, not usually but could with even limited? Do I sound beside myself well I guess I am and I'm mad, really mad because no one has a handle on these diseases yet after 100 years. I'm blowin off steam probably because tonight the pain is back in my hips to knees. Nothing seems to help this pain either so I have no tricks up my sleeve for this one except lack of sleep.

Is this too negative? I can't tell right now.
Judy
A happy heart is good medicine.

#2 janey

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Posted 04 September 2008 - 04:29 AM

Judy,
I hope that this morning has brought you less pain and that you are feeling better. Pain can affect us in so many ways and anger is certainly one of them. We open here for all sorts of emotion so I'm glad to see that you have used this forum to give you some emotional relief.

Can anyone tell me what the signs and symptoms of diffuse scleroderma are
?

I'm not a doctor and just knowledgeable through my own research, so I'm going to provide a couple of links for you. One to limited scleroderma and one to diffuse scleroderma.

As you'll see the signs and symptoms of both are similar. However, the skin involvement in diffuse is usually more widespread and occurs quicker than limited. However, then you have scleroderma sine scleroderma which is diffuse without skin involvement. Skin involvement in limited is usually below the wrist. Organ involvement can be the same for both types. It's repeated mentioned that with diffuse, things happen faster than with limited.

As far as treatments go, they too can be the same; however, stem cell transplant are now being used more for people with a fast progressing diffuse. How people react to the various treatments is also different. I wish there were a clear cut answer, but I think you already knew that wasn't the case. One of the reasons for this is that this disease is so hard to predict is that it is different for everyone. Symptoms, speed of progression, time of remission/recurrence, treatments, complications, degree of complication - we're all different.

I'm sorry I couldn't provide definitive answers, but hopefully this information and the links will help.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#3 Peggy

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Posted 04 September 2008 - 09:41 AM

I think I can relate to what you are talking about. My sclero started with "peripheral neuropathy" where my ankles were swollen so big and the skin was so tight I couldn't get into shoes. Then my feet and hands started tingling. Then the tingling went to where they went numb. This then moved up my legs and I would get these shart shooting pains where it felt like I was getting stabbed from the inside out. I saw neurologist finally and he diagnosed the peripheral neuropathy with mixed connective tissue disease and prescribed neurotin for the nerve pain and then Lyrica. I still have this and the numbness has now damaged my muscles and my legs are deadening up to the knees. I now have Polymyositis in addition to the Systemic Sclero, Neuropathy, Mixed Connective Tissue Disease, Raynaud's, Sjogren's and thryoid disease. They call me an autoimmune disaster. So, like I said, yours sounds similar to mine on how all of this started for me. It took over a year though before the neurologist finally referred me to a rheumatologist who diagnosed the Sclero. It was a nightmare and the nightmare continues with all these diseases going rampant.

Warm hugs,

Peggy

#4 canon

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Posted 04 September 2008 - 11:35 AM

Thank you Peggy and Janey and I am really sorry if I invoked any bad feelings you may have of your own. I was shocked that I even sent the message. It trully isn't like me to be so angry but I have been lately. It's just that it goes on and on, one thing after another, some things are not anything to worry about and somethings are concerning and extremely confusing and painful. To top it off some Doctors don't know what to do and then afraid to do something. This too for me has been many years but progressively getting worse and more painful and more symptomatic. I have been on methotrexate injection and plaquenil for almost 8 years now with increasing doses of methotrexate and I know without it my labs and symptoms are wild. I have had trials without them and it was really scary. Guess it has been a bad week. :rolleyes:

Well on a more positive note, life has been good. Though I couldn't have kids of my own, my extended family has been a blessing. The kids are wonderful (like they were my grandchildren), their mom is like a daughter and frienships have been long term. Each one has been a blessing and a gift and I am extremely thankful for what has been given to me. My immediate family are wonderful too.

Wishing you all well,
Thanks Judy
A happy heart is good medicine.

#5 smac0719

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Posted 04 September 2008 - 12:39 PM

Judy,

It sounds like you have a loving and supportive family. That's one less thing you have to worry about through your pain discomfort. When in a lot of pain, just seeing a familiar smiling face or hearing a caring voice makes life a little easier for me even if only for that moment. I wish I had something more to add that would help ease your pain. Just know that you are not alone and if nothing else you have friends here that you can vent to whenever you like. My thoughts are with you.
I may have Scleroderma, but Scleroderma doesn't have me!

#6 canon

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Posted 04 September 2008 - 03:42 PM

Thanks Janey,

The articles were more informational than what I had been reading. They answered many of my questions. It would be nice to be able to understand the skin scoring. It seems there is a debate on where proximal begins.

Thanks again, Judy
A happy heart is good medicine.

#7 smurfette

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Posted 04 September 2008 - 09:09 PM

Judy,
I am so sorry to hear of your suffering. This nasty disease seems to hit each one of us in a different and awful way. There are similarities, but it seems to run its own course. The best thing any of us can do is to find a good doctor who can help lessen the symptoms and reduce the pain. Then of coursed there is this forum where you can get info to understand what is happening to you and you can vent. We can share your pain because most of us literally do share it in some form. We can support you through the tough times. Don't apologize for sounding off. That is what we are here for. Many of us have gone to doctors. who don't understand the disease.

Many of us have changed doctors at least once. I you feel that your doctor does not get it and does not seem to be trying to get it - he may be contributing to your frustration. Unfortunately, with this disease, as with most health care issues, you must be your own health care advocate, and if you feel that you are not getting what you need from your doctor maybe you need to change. If you think you can work with him/her, but you need to be more specific about what you need explained, then try to bring someone with you to help take notes and keep you on track to get the info you need each visit.

In any event, I hope that you are feeling better and are able to find the answers to your questions. Scler is a complicated disease with very few clear cut answers. It seems that no two people get it the same way. It has so any different types of progressions. I hope that no matter which type you are suffering with that you feel better and are able to get the answers you need.
Smurfette

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#8 canon

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Posted 05 September 2008 - 01:08 PM

Thanks Smurff, it was a really bad night. I have kept my legs up alot. they are not as painful. I have about 7 Doctors and a NP that see me. Most are specialist, one for each system but they always seem to not agree with each other. I believe the rheumatologist, pulmonologist, cardiologist, nephrologist and NP are pretty much on the same page. The dermatologist, GI, and Internal medicine are sometimes not. The disease causes much confusion. They are not scleroderma specialist and rarely ever see people with it.

One of the rheumatologists that works with my rheumatologist saw me a few weeks ago in my doctors absense. She is listed as a specialists on line for scleroderma. She told me that day I have systemic sclerosis but which one; she didn't say. My rheumatologist only tested for scl 70 which was negative. I checked my profile on line with my insurance company and she gave them the diagnosis of systemic sclerosis and they put it in my profile. I hope I don't lose my insurance now. I saw this just last night. My rheumatologist just started writing it in her notes a few months ago. Well I got my second opinion with out blinking an eye. still feel like I'm in limbo though. Good thing for feelings.

You have a good GI doctor. How is the new procedure coming? I had a follow up with mine on tuesday from the endoscopy. Of course I was ready to blast away but he is coming around and seeing what scleroderma can do with out aggressive treatment. I talked about scleroderma and lupus with him 6 years ago. No one would listen when I asked for an increase in the protonix especially when the insurance company denied 2 pills each day. This time I asked him to change the protonix and add carafate to stop the esophageal spasms. He was surprised carafate worked for spasms. No irratation, no spasm, simple. He gave me aciphex in place of protonix and liquid carafate and its working wonderfully and I'm not constipated yet from the carafate. He also told me my LES was sluggish. He also gave me a copy of the pathology report from biopsies, not nice but not cancer yet.

We are all in the same boat. It must be a test on coping skills and or faith. We have them and I read it alot on the forums. There are so many brave people living with these diseases. I have always thought scleroderma was the worst and I still think that, even the name is awful.

Thanks again smurff,
Judy
A happy heart is good medicine.

#9 canon

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Posted 05 September 2008 - 01:10 PM

Thank you smac and my family is awesome. You all have been awesome too. I am just amazed at the courage every has.

Thanks,

Judy
A happy heart is good medicine.

#10 Snowbird

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Posted 05 September 2008 - 03:32 PM

Hey Judy

Sorry to hear it's been so miserable for you lately....and of course, you are always entitled to bad days....everybody is, so don't ever feel bad about that!! I'm also sorry to hear your biopsies are not good, but also glad to hear that they are not showing any cancer. I too hope you feel better soon and get the answers you need.
Sending good wishes your way!

#11 canon

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Posted 05 September 2008 - 04:58 PM

Thanks snowbird,

I meant in the other response that I am amazed by everyones courage here.

My strength was declining before I found this forum in a very big way. Three months out of work in 2006. Just being able to talk to someone with similar diseases is healing in itself even if it feels like just for a moments relief. It's a moment that wasn't there before meeting all of you folks.

Thanks,
Judy
A happy heart is good medicine.