9 posts in this topic

Hi Friends,

 

It all started with my finger getting blue didn't take this seriously as I kept my self warm it was all good.

 

I come from a warmer climate and as I got married I came down to Los Angeles.

 

My blue fingers started getting blue even more day by day. My parents where more worried and asked me to show doctor as its not normal to have blue fingers.

 

I googled and it said keep yourself warm and this happens to lot of women, known as "Raynauds phenomenon". I was not that serious for 5 years and then once it happened that I had to visit my parents and they forced me to see a doctor and my doctor scared the daylights out of me and asked me how you can be ignorant, you need to show a rheumatologist. They gave me lot of blood work and I got my reports and the rheumatologist told me that I have scleroderma, I am positive for Scl-70 and he told tme here is no cure and no one knows how it comes.

 

As I live now in Los Angeles he asked me to meet doctors here as I have to be under cure every three months, I have to see doctor. So I was not clear with what happens? How everything will be? What is causing it and will I have babies?

 

These things where bothering me a lot.

 

As I came to Los Angeles the first thing that I did was get insurance in Kaiser Permanente and then got my appointment with a rheumatologist and she asked me to get blood work, echocardiogram, and pulmonary test.

 

With my

1) blood work everything was good, my kidneys, liver, etc. were all good

2) echocardiogram was all good too

3) pulmonary test showed moderate restrictive lung disease which is consistent with scleroderma and asked me to get CT scan of lungs and scan of the thoracic.

 

They did find something like low lung volumes. Hazy markings in the posterior lung bases most likely atelectasis and 1.5 nonspecific anterior mediastinal soft tissue nodule, residual thymus tissue. I really didn't understand anything that they said.

 

So when I met my doctor she told me to meet a "lung specialist" so she discussed the whole report and ask me if I was a premature baby I told her no and she told me we can do one thing, lets get a pulmonary test done again and we should get even a sniff scan.

 

The pulmonary test should be done every three months so we get to know what happening. So I got my reports and there were all the same. She asked me to get it done after three months and when I got them done the results where very bad so she asked me to get one more CT scan done.

 

This time they found something increasing and she asked me to meet a surgeon. When I meet the surgeon he scared me; he was worried about the increase which seems like a "tumor" and asked me to get more tests done: CT scan with contrast and PET scan. I got my CT scan with contrast; then the surgeon told me that they don't see the tumor or anything, it has disappeared, and he said someone is really looking out for you because everything looks good and we need to wait for PET scan so we will have a clear picture of what it is.

 

I have done my PET scan and I'm waiting to meet my doctor. I'm going to meet him on the 6th Feb 2013. Well if everything is all right I will have to have a biopsy operation on the 8th March 2013, to see what are the hazy markings I have on my lungs because those also are increased from past scans.

 

I'm really scared to what is happening. There is no clear picture too what will effect first and it's a little frustrating. As I had planned to have baby by now as I finish 6 years of marriage. I can't even be on tablets as I need to have baby. Please let me know if anyone is going through this same disease as I'm going. I know everything will be okay. I just need a support of friends who is going through same as I am.

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Hi Poojarakhia,

 

Welcome to Sclero Forums! I am sorry you have scleroderma and that you need to have a lung biopsy, as well. That is an awful lot to be going through in a short period of time.

 

If it's any help at all, I've had quite a few lung abnormalities for many years and they are all benign. My impression is that it is pretty common in scleroderma to have all sorts of oddities show up in lung scans. I have pulmonary nodules, a mediastinal bronchogenic cyst, fibrosis on both bases, and granulomas -- and those are just the things I can remember off the top of my head.

 

I have a friend who had a big scare with "haziness" on her lung scan but it turned out to be caused by her long hair! Several times doctors have complained about haziness in my husband's chest scans, but they all turned out to be okay later on. He just has a lot of scans because he's had a lung transplant. Your doctors just need to be sure that nothing more serious is going on with your lungs.

 

In order to have a baby, you first need to get your illness properly diagnosed and treated. Then you will be healthier and able to give birth to a healthy baby, too. It might mean postponing motherhood for a little while. Be sure to discuss this thoroughly with your scleroderma expert. There is a major scleroderma center in UCLA so I hope you are consulting them. We have a whole section on Scleroderma and Pregnancy which you can read when you feel up to it.

 

I'm glad that you have found us. We will all be here for you.

 

:emoticons-group-hug:


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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Thank you Shelley Ensz; you have been a great help.... I just went to the scleroderma and pregnancy there is lot of information....I appreciate your help.

 

I actually don't know what kind of scleroderma I have, as they are yet doing the findings. I just wanted to know if any of them have low volume in scleroderma with hazy markings, does it mean I have diffuse scleroderma or limited? As my skin doesn't get tight or I have any visible symptoms, it will be a great help if I get to know.

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Hi Poojarakhia,

 

Welcome to these forums!

 

I'm sorry to hear that you've been experiencing worrying symptoms.

 

I have lung involvement with Scleroderma, so I can understand your concerns. Like you I underwent pulmonary function tests (PFT's) and had xrays, CT scans, blood tests and just about every lung test known to man, including a bronchoscopy (in fact the only lung test I didn't have was a lung biopsy!) I know (none better! ;)) how easy it is to worry over the diagnosis, but hopefully when you have your appointment on 6th February, the results of your tests will be explained to you and give you a clearer idea of the problem.

 

I've included links to Limited and Diffuse Scleroderma to help explain the disease a little more to you and give you some information.

 

Please do let us know how you get on with your appointment and whether you will be having the lung biopsy.

 

Kind regards,


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 Poojarakhia,

 

Welcome! I'm so glad you found us. You came to the best place on earth! I was diagnosed 7 years ago and my onset sounds a lot like yours. Besides my muscle pain and fatigue, Raynaud's was the first clue that what I had was not lupus. My diagnosis is diffuse systemic scleroderma. I have mild/moderate lung involvement and my skin tightening has been limited to my hands and face and is also only mild/moderate. My biggest issues are with muscle pain, fatigue and gastrointestinal issues.

 

My symptoms have remained stable for many years now. I started on Cellcept (mycophenolate mofetil) an immunosuppressant, right after my diagnosis. The main purpose of that medication was to protect my lungs. After 4 years on it I was able to go off it and I still have remained stable. It sounds like your doctors are being very proactive, that is good to hear! Is your rheumatologist a scleroderma specialist? Don't write off being able to get pregnant. There are medications that are safe to take during pregnancy - your doctor will know best.

 

I hate to hear people worry but we all do, especially in the beginning. So I'm not going to say, "try not to worry" as I know that is easier said than done and I actually feel stupid telling people that. Just know that you are not alone and you have come to the right place for support and answers. Also know that there are no dumb questions here.

 

Hang in there and keep posting!

(((((Hugs!))))


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hi Joelf and barefut, thank you for your warm welcome and thank you so much for sharing it with me. I'm sorry that you both went through the same as I'm going through....

 

Joelf I wanted to let you know that though I have my results normal with my PET scan, they are going to perform a biopsy on me on 8th March to see and cut lung tissue. Thank you for the link for limited and diffuse scleroderma, it was lot of help. And sure I will let you all know what my PET scan results are.

 

Barefut does your muscle pain come and go? As I'm experiencing something like this it really hurts and if I sleep then after few minutes the pain goes away. Is that muscle pain and if not how does the pain feel for you? About the medication, did you have any side effects by taking those meds? So you are completely off medication, right?

 

Hey guys, I'm trying not to worry; I have you guys to answer all my questions. Thank you so much, I appreciate your help and please reply.

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Hi Puja,

 

It is up to your doctors to figure out if you have limited or diffuse scleroderma, and much of the time they don't even know for certain.

 

The way to tell the difference between muscle and joint pain, in general, is that joint pain hurts where the bones connect, such as at the elbows, wrists, knees, etc. and often the joints are red and/or swollen and/or hot and the pain is usually the worst when the joint is being used.

 

Muscle pain occurs where the muscles are, in between the major joints. It is often felt as an achiness. Your doctor can examine you and ask questions to figure out if you have joint pain, muscle pain, or both.

 

:emoticons-group-hug:


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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Hello Puja

 

Welcome to the forums! As already said lung issues can change, recently upon clinical examination I was told I had a crackle at the base of my right lung and an infection but an  X-ray showed nothing! Everything turned out to be okay.

 

The difficulty is that diagnosis can shift and change in the early days making for much uncertainty but it leads to a correct diagnosis in the end, or it should anyway!

 

Please let us know how you get on and take care.


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 Puja,


How are you doing now? Have you had any more tests lately, or any results from your doctors yet?  I am thinking about you and sending good thoughts your way.

 

:emoticons-group-hug:


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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