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Need help with my scleroderma diagnosis


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#1 Abdul

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Posted 29 March 2009 - 01:41 AM

I have been diagnosed with CREST by one doctor and diffused MCTD by another doctor. The ANA test was positive (high) but other tests were negative including SCL70 ABS, CPK, G6PD (Quantitative), P-ANCA,C-ANCA, CRP, Rheumatoid Factor, Patient Titer, and urine analysis.

My first symptoms are difficulty to swallow food, tight skin and difficulty in sitting down on the floor (no joint pain anywhere). I had no other symptoms like shortness of breathing and fatigue.

The doctor who suggested diffused MCTD rely on skin biopsy results. the doctor suggesting CREST is relying on the fact that I had tight skin on my hand, forearm and face and difficulty swallowing food.

Can anyone help in suggesting what I should do next. Also, I notice after taking medication (imuran and prednisolon) that the pain on my upper legs and thighs has disappeared so what does that indicate.

Really looking for feedback since I had little sleep for the past week (average 2 hours daily). Again thanks to you all.

#2 janey

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Posted 29 March 2009 - 05:28 AM

Abdul,
Welcome to the ISN forum! Sounds like you have a couple of doctors working in your behalf and trying to determine exactly what you have. I'm no doctor and do not have medical training, so I can only direct you to some information on this site that might help. MCTD and Undifferentiated Connective Tissue Disease (UCTD) are diagnoses that are sometimes given when a doctor suspects one or more connective tissue disorders but isn't sure which one. I've provided links (above) to those pages if you'd like to explore them.

The treatment they put you on is similar to what I was started with (an immunosuppressant - Imuran - and a Corticosteroid), except mine was methotrexate and low dose prednisone. That treatment help me tremendously during the first year. I have MCTD (scleroderma and polymyositis). From what I've read, that is pretty standard treatment for connective tissue diseases and does seem to reduce some of the symptoms in the majority of patients. So the fact that you feel a positive difference could mean that they are headed in the right direction. Please let your doctors know how it has helped you. Since CTDs are not curable, the only thing doctors can do is treat them to slow down the progression of the disease and to make the patient feel better so s/he can maintain a quality of life.

In reference to your sleep, please try ways to relax so you can sleep. Sleep is very, very good for you and good for healing. Stress and lack of sleep can only make your symptoms worse and decrease the effectiveness of the treatment. We have an emotional adjustment section if you would like to check out some ways to help you relax.

Please keep us informed as to how you are doing and any more results from your doctor appointments and tests. Again, Welcome to the ISN Forums!

Big Hugs,
Janey Willis
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#3 Honey

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Posted 29 March 2009 - 07:30 AM

Hello, Abdul.

I understand what you are experiencing. I was diagnosed with scleroderma as soon as my rheumatologist saw my feet and range of motion in my joints (ankles, knees, wrists, elbows). Some people have nightmar-ish experiences getting diagnosed. I had a mild case of Raynaud's Disease 25 years ago, and the only treatment I was given was behavior modification. But after 10 years, it went into remission. Little did I know that Raynaud's precedes the manifestations of scleroderma. I am blessed it didn't occur earlier.

I thought it started with swollen, then warm, tender & red feet that became unbearably painful, but looking back, it really started in the joints of my jaw (seen thru xray at dentist office for dental work) and my wrists (carpal tunnel syndrome that was corrected with surgery), all within a few months of each other. Then my knees! Range of motion was so slight that I could not go down to the floor or sit in a bath tub without contorting in wierd positions. Getting up was worse. THEN MY FEET started their symptoms!

I am a fitness instructor/personal trainer and have been for the past 27 years. It is quite frustrating to have to retire from my clients and most of my group classes except for Yoga. I have lost 20 pounds in 3 months since my diagnosis. But I eat more than I ever have. If I can weigh 100 lbs I will be happy. My clients and fitness friends have told me they will never say they want to lose weight again. All of my joints protrude from my skin where my muscle used to be, and it is not pretty. I just wear long sleeves and pants.

My blood levels were normal, but from what I understand, that does not mean one cannot have scleroderma. The radiologist reported that the joints of the hands and feet are arthritic. My feet hurt all of the time and the skin has begun to have very dry and rough red spots where the skin is extremely dry, although I must butter my feet with creams 10 times a day! I don't have any gastrointestinal or pulmonary problems, but there is some hypertension in the heart, and that is being monitored by my cardiologist. I have been taking 10mg prednisone since January and methotrexate with folic acid for 4 weeks with no side effects. I am grateful. I am also taking neutronin for nerve pain in my feet.

I think I have learned that scleroderma (and maybe other autoimmune diseases) is a disease of exceptions. We all have similar symptoms, but not all exactly the same. And it is very interesting learning of other's starting points and how they live with it daily. Some days are great, and some are not so great. But it helps to be an encouragement to others and have others encourage us. My family and friends are the best!

I wish you comfort and peace with your journey. Gain what you can and pass it forward.

Kindest regards,
HONEY

#4 Snowbird

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Posted 29 March 2009 - 08:23 AM

Hi Abdul

I can't offer much here but I wanted to welcome you too -- you have come to the right place. There is always someone here who can help keep asking your questions and no, doubt, you'll have more answers on this one later as well!

Are either of your doctors Rheumatologists who specialize in scleroderma? It would be very helpful to you if they are knowledgeable in this disease.
Sending good wishes your way!

#5 Jeannie McClelland

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Posted 29 March 2009 - 12:04 PM

Hi Abdul,

I also wanted to welcome you to the ISN Forum. Hopefully we can answer any questions you have as time goes on and offer you understanding support.

Janey has given you good information. In many ways it doesn't seem to really matter which connective tissue disease you have since the treatment is mostly the same and symptom oriented. I have systemic sclerosis sine scleroderma and was also started out with an immune system suppressant (CellCept) and a steroidal anti-inflammatory (prednisone).

You don't say how long you have been taking the medications, but it is good news that they are relieving symptoms. Regular follow-ups are important and so is reporting any new developments like shortness of breath, dry cough, etc.

Not everyone has the same symptoms and everyone pretty much has a different course of the disease. Many people have lived a very long time. So it is a really good idea to try and reduce your level of stress over the diagnosis. You might want to speak to your doctor about your difficulty sleeping if it continues.

Best wishes and again, heartfelt welcomes,
Jeannie McClelland
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#6 Amanda Thorpe

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Posted 29 March 2009 - 12:45 PM

Hello Abdul

Welcome to this forum where you will get (and have already been given) excellent support and sound advice.

This is the best and safest place to ask questions about scleroderma as a lot os information on the internet can be inflammatory and downrighrt hysterical.

I am sorry you have been given a CTD diagnosis, whether limited scleroderma or MCTD as it can be life changing but it's by not automatically "game over".

It is beneficial to have a rheumatologist who specialises in scleroderma and to keep in close contact if symptoms change, medications don't work or cause side effects.

I can't help with the slleping as I can't stay awake! :lol:

Take care and keep posting.

Amanda
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#7 Abdul

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Posted 29 March 2009 - 06:45 PM

First I would like to thank every and each one of you for your kind support.
I am 33 years old and was diagnosed last week. Till now I am not convinced that I have the disease but I would like to ask anyone who went through this process:

First, if you start with tight skin and with medication it is almost gone, would that mean that it could come back anytime in the future? Also, I had trouble swallowing food but it improved within 2 days after taking the medicine. Can I assume that this issue will not progress in the future?

Second, if you continue to take the medication why does the disease start to attack internal organs?

Third, one of my doctor has suggested that my diffused MCTD will progress in about 2 years time to Lupus or scleroderma. Has anyone was told the same by his/her doctor but the disease did not progress?

I hope you can tolerate my questions as I have read a lot over the internet which basically freaked me out.

#8 Jeannie McClelland

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Posted 31 March 2009 - 04:41 AM

Hi Abdul,

First of all, don't freak out!

I'm going to answer based on your CREST diagnosis, not the MCTD, which I know very little about. I do think the accuracy of any prognosis in any autoimmune disease might be limited by the same factors.

Because scleroderma's course varies with each and every person, nobody can tell you definitely what will happen to you. All they can do is quote statistics (which in application are really just an estimation based on past observation) and possibly something from their clinical experience. Since scleroderma is such a rare disease, it's unlikely any doctor will have seen a lot of cases unless they specialize in scleroderma and are connected to a large treatment/research facility in a major metropolitan area.

I know when I was first diagnosed I wanted definite, 'written in stone' answers. When I asked about my prognosis, my doctor (who does specialize in scleroderma) said "you'll do as well as you do." I wondered what on earth that meant. I've since discovered that since I have done well (for 2-1/2 years) and the medications I am on have stabilized the lung fibrosis and improved my pulmonary hypertension, I am likely to continue to do well.

It's hard to answer most of your questions with any real confidence that my opinions are either correct or predictive. The one I can answer would be that yes, there have been many documented cases of an autoimmune disease either not progressing or progressing so slowly that it does not seriously impact one's quality of life.

It sounds like you've had a wonderful response from your medications. I'm going to keep my fingers crossed that you continue to do absolutely brilliantly. :) And please continue to ask questions and post on the Forum. We all care about you.

Best wishes and a warm hug.
Jeannie McClelland
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#9 jillatk

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Posted 31 March 2009 - 08:28 AM

I agree with what Jeannie said. I just saw my rheumatologist on Friday and his response to my questions was "I can tell you what population studies say, but you are not a population, you are an individual." I thought that was a great answer. You are in fact an individual and this disease is very individualized. Focus on the things you can control - stress, rest, healthy diet, staying on top of symptoms, getting support and keep moving on through life. Your disease will unfold as it will unfold. You can only control what you can control and nothing else. It is not hopeless, even though it can feel that way.

Keep plugging along, asking questions, finding doctors who will take the time to really be thorough and thoughtful, and listen to your body and take care of it - it is the only one you get.

Jill

#10 jefa

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Posted 31 March 2009 - 08:55 AM

Jill, thanks for sharing your rheumatologist's comment with us and for adding your very astute philosophy of life with a chronic illness.
Warm wishes,
Jefa

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