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marsha

So many questions

18 posts in this topic

Eleven years ago I presented with Raynaud's and have had a time struggling with that.

 

A year ago I was told I had Lupus, I went to a second opinion and that doctor old me I had Limited scleroderma or CREST syndrome. In the meantime I developed an ulcer on my big toe that never broke through and has never healed.. My physician sent me to a vascular surgeon for an opinion on the sore. She ran a gamut of blood work and found that I have Anti-Phospholipid Syndrome (APS) for which I am on coumadin and she believes that I don't have CREST. She says I do not have enough markers to confidently confirm my diagnosis. All the tests came back normal.

 

I am so confused and worried. I am beginning to think that this is all in my mind. is there anyone else out there who has all the symptoms of an autoimmune or connective tissue disease but has not been confirmed yet? is there anything else I can do, is there some thing I am missing to do?

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Marsha,

Welcome Darlin! I'm so glad that you felt comfortable enough to register and post your concerns about having connective disease tissue (CTD). There are so many people in the same situation as you or who have been that situation. CTD is a very hard thing to diagnosis. Since Lupus, Scleroderma, Rheumatoid Arthritis and Poly/Dermatomyositis are all CTD they sometime exhibit similar symptoms making diagnosis difficult. APS being another autoimmune that can also exhibit similar symptoms as CTD. Unfortunately, there is no one single test for any of these diseases that allows us to know for sure. My blood work is negative for scleroderma but positive for mixed CTD but I didn't find that out until about 4 years after diagnosis with polymyositis and systemic scleroderma. My diagnosis was made based strictly on my symptoms.

 

So I would suggest that you do what I did and start making a list of ALL of your symptoms even those that you don't think might be related to autoimmune. I went in with a 3 page history which made diagnosis really easy for the rheumatologist; however, he did do a nailfold capillaroscopy test right there in his office and afterward, said Yep - you have scleroderma. I don't have skin involvement so it's not that apparent.

 

There is obviously something going on with you, so I would continue to seek out answers. Have you been to a rheumatologist? There are the best specialists for CTD. Please seek on out if you haven't seen one. In the meantime, please reduce your stress level as much as possible. I know that's easier said than done, but stress can worsen any disease. In between doctor appointments, do things you enjoy. Try not to deal on the symptoms and possible causes. Just be sure to communicate EVERYTHING to your doctors. The more they know the easier it is for them to reach a diagnosis.

 

Please keep us informed on how you are doing and any doctor appointments. We are here for you darlin.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Marsha! Welcome to our sclero family.

 

You're not alone in finding an easy answer to symptoms, and NO I doubt very much this is all in your head! Here is a link to a page on difficult diagnosis that may help you.

 

Just keep asking questions and you'll find you're among friends, with a lot of experience, knowledge, and compassion.

 

:flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha,

 

First of all a warm welcome to these friendly and informative forums!

 

I can understand how worried and confused you're feeling at the moment but be assured that the symptoms you're suffering with are most certainly not in your mind. It can be overwhelming when faced with such a diversity of symptoms; we have a link to Emotional Adjustment which I hope will be helpful to you.

 

Janey's advice about making a list of all your symptoms to help your rheumatologist is a very good idea. Are you being dealt with by a Scleroderma specialist? It's important to be treated by an expert as many rheumatologists do not have the expertise to deal with such complex diseases as Sclero, CTD and Lupus. I've also included a couple of links to Anti-Phospholipid Syndrome and Lupus to enable you to increase your knowledge and help you to get to grips with these diseases......knowledge is power! ;) Many of our members were in the same position and unable to get a clear diagnosis for quite a long time; I believe the average time it takes is 6 years! :(

 

However, the very best thing is that you've now found our forums and joined our community and you will find that you will be able to meet lots of like-minded friends who totally understand the stress and worry you're suffering. Do keep posting and let us know about your doctor's appointment and the results of any further tests you have.

 

Here's a :emoticons-group-hug: to welcome you....(I'm the red one!)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Marsha

 

What's happening with the foot ulcer? I ask because I now have two, the baby one has just now healed...hooray!

 

A scleroderma expert is always a good idea because they know that a scleroderma diagnosis is best made using the combination of symptoms, test results and blood markers. I have diffuse scleroderma with heart involvement yet according to my blood work there is nothing wrong with me as my ANA and SCL-70 are negative and despite the fact that scleroderma is a rheumatic disease my rheumatoid factor is normal...go figure!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha,

 

I'm just popping in to second everything the others have said plus add my hearty welcome.

 

I wish I'd kept some kind of database of members' time to diagnosis and how many different ones they've had before landing one that 'stuck'. It's so common we could have T-shirts printed up with a silly slogan that would raise tons of money - we'd all have one. :)

 

Keeping a symptom list is a great idea. That's what got me sent to a scleroderma specialist and the definitive diagnosis. Another useful thing is to get copies of all lab work, tests, clinical notes and summaries and then distribute them to the doctors who hadn't done the work. Given the burden of time most doctors have to struggle with, even if copies are forwarded and in your charts, the odds are the doctors won't have had time to read and assimilate any new information. The first time I heard "Hmmm, that's interesting, I hadn't considered that" I felt all my time at the photocopier had really paid off. :lol:

 

Anyhow, back to the welcome! We often give new members a hug, so here's one from me :emoticon-hug:. I hope to see you around the Forums.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thank you guys for all the hearty welcomes!!! I live in a very small town in Northern Maine and feel very isolated, no one I know or heard of has CREST, there are a lot of people diagnosed with Lupus. I went and saw the Vascular internist who has been taking care of the Raynauds portion of this disease, She confirmed today that I do not have Lupus and she is fairly positive that the original diagnosis of CREST is correct. she has also decided that with all the blood work in I do not have APS, So off the coumadin I go, which I am very glad for. The Ulcer on my toe is doing really great right now, The Vascular internist suggested I use a topical cream which I have been using for over a month and I must say my feet havent looked this good since I was in high school. It has really sluffed off a ton of the thick hard cracking skin on my heals.I do have a Rheumatologist, but I didn't feel like he was concerned with my symptoms other than the raynauds. So I have a few more questions for my new friends

is anyone else experiencing

1. redding and blochiness of the face ( my face looks horrible)

2. unable to think clearly and hold on to a thought

3. sore achy muscles and joints

4. exhaustion

5. I feel like I am always on the threshold of getting sick but never do..

6. my feet and ankles are always swollen

 

I have been keeping a journal for the last few years, it helps when I get to the doctor so that I can explain anything that has happened between visits. I am so glad I found this place thank you all..

Big hugs

Marsha

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Hi Marsha,

 

It's very good news that you don't have Lupus or APS but I think the feeling of being isolated is one of the worst aspects of having such an unusual and bizarre disease such as Scleroderma. None of my friends had ever heard of it when I first explained about it; now they're heartily sick of hearing about it as I insisted on boring them totally witless explaining at great length every minute detail of my diagnosis and treatment!! :rolleyes: ;)

 

I have experienced a couple of the symptoms you describe; I can empathise with the aching joints and muscles and also the exhaustion but thankfully that was alleviated to a large extent when I started my medication. I have very little skin involvement and thankfully haven't experienced any change to the skin on my face. One thing that does seem to apply with Scleroderma is that it seems to affect different people in many different ways; I think this is what makes it such a bizarre disease and so hard to diagnose.

 

Keeping a journal is an excellent idea! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha,

 

I know Maine pretty well (some of the family are in St. Alban's and another was in Sebec) and I can understand how living in a small town can add to the feeling of isolation, never mind having slerowhatsis. I came from a tiny town and for 44 years of my life, lived in small towns or villages (some were in foreign countries!). It's only the last 20 years that I've become a city girl instead of a country mouse. Even here, though, I get most of my support from my friends here at sclero.org. So don't forget there's always somebody only a mouse click away from you anytime you need an understanding pal or have a question to ask.

 

I think at one time or another I've had all of the symptoms you describe. Like Jo, most of them waned once I was on medication. Some things I could get to let up with some lifestyle changes. The face thing? Sunshine and wind makes mine flare up. Joint aches and pains? Exercise helps. I'm not a gym person like Jo (too shy, believe it or not), but I exercise at home. I have this really expensive exercise machine and I bet you do too. It's the stairs! I use my absentmindedness (#2 on your list) as an aid to exercising and go up and down those stairs a zillion times a day. :lol:

 

Exhaustion. Well, that seems to be really common with autoimmune diseases. We have a wonderful section on Fatigue. I think this article has some fabulous tips about fatigue and factors that affect it (even diet) and how best to cope with it. Don't let the 'cancer' in the title scare you.

 

Cancer-Related Fatigue. Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent a person from functioning normally and impacts a person's quality of life. Cleveland Clinic.

 

The swollen ankles and feet are something you ought to mention to your doctor, including how often and when they are swollen. They can be a symptom of something that might need to be looked at. Of course they could just also be too many salty snacks and sitting too long at a stretch. I used to panic myself silly because every day my legs would feel stiff and swollen. Yep, I was spending the day surfing the sclero sites with one hand and stuffing comfort potato chips in with the other. :blush: Ah well~

 

Anyhow, that's my contribution to your post. I love your Moose avatar! Absolutely perfect! And big hugs back at you,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Marsha,

 

Welcome to Sclero Forums! I don't have much to add, as you've already gotten a lot of terrific input. So I thought I'd just drop by to welcome you, and give you some warm hugs.


Warm Hugs,

 

Shelley Ensz

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.

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Hi Marsha!

 

I also welcome you to this awesome Sclero Community, where folks here...are FAMILY :emoticons-group-hug: !

 

The symptoms you described, (in your latest post on your thread here) unfortunately, are what most of us, suffer with or have had, at one time or another.

 

It sounds as though your vascular internist is "in the know" and will be a great asset to you on your Sclero journey!

 

Please keep us in the fold, where you and your health issues are concerned; As Jeannie mentioned we're only a click away and you are NO Longer alone :emoticons-line-dance:

 

(By The Way...I'm with Jeannie, where your avatar is concerned...very fitting :terrific: )


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Marsha,

 

In answer to your 6 questions -

1) YES

2) YES

3) YES

4) YES

5) YES

6) YES

 

Keeping a journal is terrific!! I do the same thing. I also take it with me to each doctor appointment and discuss it, then write down what the doctors thoughts were. It's proved to be very helpful to both the doctors and me!

 

Hang in there. :emoticons-group-hug:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Thank you all so very much for the warm welcomes, I am sooooo very glad I decided to check this site out and join!!! I have another question that came up while browsing through the different posts, What is considered skin involvement? With the CREST I have the R,E, am starting to show signs of the S and I have the T, are the S & T considered skin involvement and does all CREST start at one time or another to attack the internal parts? or can it just stay to those areas? I am getting confused by all the research I am doing. Its very overwhelming.. Thanks again everyone!!! :thank-you:

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Hi Marsha,

 

It's not surprising that you're feeling confused; Scleroderma is a very complex disease and even the experts don't have all the answers!

 

I've included a link to CREST aka Limited Sclero which I hope you'll find informative and helpful. Limited Scleroderma is diagnosed when there is tight skin limited to the fingers, along with either pitting digital ulcers (secondary to Raynaud's) and/or lung fibrosis. Limited Scleroderma often causes Raynaud's and esophageal problems. Occasionally other internal organ involvement occurs, but usually only after many years of the disease. The onset and progression of Limited Scleroderma is usually much slower, and the outlook in general is very good. The skin of the face and neck may also be involved.

 

The skin involvement in Scleroderma varies tremendously; some of our members have a lot of skin fibrosis particularly on their hands which is the S of CREST and others have no obvious skin involvement but their internal organs have been affected. To give you an example, I have been diagnosed with Limited Systemic Sclero as I have lung fibrosis and Raynaud's but very little skin involvement (only the tips of my fingers which are shiny and tight.) Looking back with hindsight I can see I presented many of the classic symptoms; the joint pains, carpal tunnel syndrome and general feeling of feeling tired and unwell. At the time of course I didn't realise the significance of these symptoms and it was only when I became breathless and developed a dry cough that wouldn't go away that I went to my doctor and thankfully she was on the ball and referred me to a local consultant who then referred me double quick to a top lung specialist for which I'm eternally grateful!

 

You can see from the above that Scleroderma is by no means straightforward! :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Marsha, A hearty welcome from the East Coast..As I am learning very quickly we all are very different as far as symptoms go. Everyone path seems slightly different and what affects one may not affect another. I am still on my path to getting answers as well. I can tell you that I have a lot of issues with skin changes, tissue and muscle changes. They have a wonderful scleroderma clinic in Boston with specialists.( a little bit of a trip for you but probably well worth it)Try to take everyday as it comes. I too felt like no one understood what I am dealing with both physically and mentally,alone. However you have friends here that completely understand.. :emoticons-group-hug: Christine

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