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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 gina

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Posted 08 August 2008 - 08:25 AM

The day I had my second child, 13 years ago I had a c-section and that night I had pain in my upper abdomen. The spinal block was meant to have blocked it, yet I still had severe pain. A surgeon was sent and I was given pain medication.

Not long after that I started getting reflux. I've always had internal issues, with cysts etc and adhesion's. I ended up thinking I had a stroke, and lost feeling in my left side. Doctors did tests and there were no findings. Basically that is the way I have migraines, even without head ache pain.

Slowly the reflux got worse, and the seizures continued. At the start, seizures were weekly, and I was sent to a neurologist for an MRI and the results were inconclusive. I was borderline epileptic. I declined medication.

My joint pains were becoming increasingly painful.

My stomach probs got worse, and I was told to have a complete hysterectomy. So I did.

Following that my reflux intensified with the following symptoms. It was like air was having problems moving through my rib cage and up the GI tract and making noises. The pain was severe. (Can anyone else relate to this?) My stomach started to dissent, and the acid became so bad it burnt the roof of my mouth. No medications worked. Doctors decided to operate on my oesophagus. That worked for 6 weeks, but then it had the opposite effect, I couldn't burp or eat solid foods, and they reversed the operation.

Swelling began on my legs, but came and went. I always suffer bronchitis. Winters became insufferable with back pain and joint pain (it was like their was no lubrication in my joints). I became super sensitive to cold, particular on my fingers.

Other symptoms I have since had.
* Hair loss
* Freckle loss
* Rashes
* Skin tightens and goes shiny
* Severe dry mouth
* Dry eyes
* Dental Problems
* Sinus problems
* Fatigue
* Depression (due to Doctors not knowing what to do)
* Itchiness
* Red spots on skin.
* Sleeplesness
* Heart Pulpatations with severe reflux
* The tips of my fingers change from red to purple to white.

I was hospitalized for a month as I was so dissented I was actually vomiting my faeces. I was then sent to a pschy for analysis.

No doctors believed anything more than reflux was wrong with me and the only solution was drugs, without telling me they were addictive. They took the easy option.

I went to another doctor got off the medications, and still suffered the above symptoms and in particular the reflux.

I dealt with the probs myself, and slowly the symptoms went away. I was healthy and all was good.

Recently, in the last 12 mths the symptoms have slowly come back, to the point where I have been hospitalised a few times. The doctors mentioned possible scleroderma. My heart rate and blood pressure was up. Reflux is severe. All symptoms are back and getting worse. I have calcium deposits on my rib cage. I am puffed, fatigued and in pain. I have changing colour in my fingernails, and my fingers stiffen up. Although in pain permanently the symptoms come and go.

I did some self research and Scleroderma seems to be the perfect fit. Even my general practitioner said it was a possibility. Although it was obvious he didn’t like the fact I researched and discovered a possible disease I may have.

I have been diagnosed with rheumatoid arthritis and my Anti Body tests came back fine, and I saw a specialist hoping to get some further diagnosis scleroderma related. The rheumatologist looked at the Anti Bodies, and because they were negative, and my fingers don’t stay clawed, she stated that I don’t have Scleroderma.

I believe I have all the symptoms, as I believed my mother had before she passed away from Kidney failure, heart failure and lung complications.

I am not scared of sclerederma I just want some help, and someone to believe me. I am not going back to doctors and I will deal with it the best way I can.

Is there anyone out there who can relate to my story, or offer some advice? I am desperate to see if others have similar symptoms.

I would love to hear from you.

In retrospect there are some other symptoms.

Thanks.

#2 Sheryl

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Posted 08 August 2008 - 08:48 AM

Gina, I would like to welcome you to our forums. Your message sure sounds like you could be in the early stages of scleroderma. You don't have to have curved (sclerodactly) fingers. You also don't have to be antibody positive. I am antibody Negative I also don't have the curved fingers at this time in my progression. Try to find someone who is a Scleroderma Specialist in Rheumatology, they may help you get a quicker diagnosis. Read and ask all the questions you wish until you feel comfortable about this subject.
Strength and Warmth,
Sheryl

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#3 gina

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Posted 08 August 2008 - 08:59 AM

Thanks Sheryl,

That is really interesting. I am in Australia and there don't seem to be as many specialist options available. I am trying to find the right person. Thanks for your support.

#4 Snowbird

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Posted 08 August 2008 - 10:12 AM

Hi Gina

You have certainly had a really rough go of things for many years.

It sounds to me like you need a rheumatologist that is knowledgeable in scleroderma, if not just to rule it out properly meaning that he/she would have a good knowledge of the disease (alot of them know very little about scleroderma and it doesn't sound to me like the one you went to knows much about it either?). So, I sure hope you get another opinion! If you say what area you live in, the moderators here will be able to give you a link to specialists in your area....I know you have lost faith in them and I can understand why with everything that's being going on with your symptoms but if you find the right doctor, you'll find the help you need with those symptoms (and maybe they'll figure out just what they are while they're at it!). Keep asking, there's lots of good help and advice here!

Your fingers sound like raynaud's phenomenon....that'll be on the site here too....
Sending good wishes your way!

#5 luvbnmom3

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Posted 08 August 2008 - 10:37 AM

I had a small seizure during labor with my 5 year old (no eclampsia) and that night everytime I started to fall asleep my body would do that jerk thing & wake me up (which I think is usually a normal thing...probably not to that point that you can't go to sleep though) after numerous times of being jerked awake they gave me a sleeping pill so I could go to sleep. No more seizures but my muscles get spastic in my shoulders, back, and abdomen, and my shoulders tremble (on the inside), and sometimes my leg will jump or a finger will but neurologically I appear fine. I see a Neuro at Wayne state at the end of the month.

I have not been diagnosed with sclero (by a rheumatologist, the radiologist wrote "crest") Anyways, My skin gets tight & shiny on my hands & fingers as well (looks hidebound or like a raw but dry, boneless, skinless, chicken breast... that comes & goes BUT, it used to do that JUST on my nuckles (1+ years ago, looked like webbing between nuckles), now it does that tips of fingers down past my wrist. I have Raynaud's and my nailbeds are ALWAYS white.

My rheumatologist said that my skin doesn't look tight to him (at that moment in his office & it didn't to me either at the time) & that probably my skin must just feels tight sometimes but it isn't tight (aka...it is all in my head) & since my ANA is fine, the esophageal motility dysfuntion the radiologist found and the Raynaud's I've had for 2-3 years must be unrelated (coincidence) and that I have fibromyalgia (which is what he told my Neuro). Acid burns the back of my throat especially at night (I told the doctor no to that because "out of sight out of mind" so I forgot about it...especially night time symptoms I forget) and as of late, I seem to get a sore throat that comes & goes throughout the week.

I had pain all over until my rheumatologist put me on an NSAID, I took it for 10 months & have never been in pain like that since. I only get it when my skin is tight (in my joints) or in my muscles during and after a spastic "episode".

When the Raynaud's started in the fall 2005, spring 2006 I started swelling in my legs, my whole body, face, back, edema everywhere. It was pitted, now it isn't. I didn't get diagnosed with Raynuad's until July 2006. I still wake up with swollen hands, although they haven't been as swollen the last couple of weeks....maybe that's a good thing! My legs are swollen often, if I try to sit on them, my calves feel like they're going to explide like a water balloon.

I also have lots of hairloss, chronic sinusitis, itchiness mostly on torso, ankles, feet, & scalp (I guess I could've said all over ...hahahaha) and migrains without headaches...supposedly anyway.

So, I'm sorry I'm not much help as far as saying I can relate to much and I have sclero, since only a Radiologist said sclero, but I can relate to a bit of your symptoms. Hang in there, I am so sorry you are dealing with all of these things, it is very frustrating not knowing what is going on and not being taken care of. The pain I had was debilitating and embarassing (everyone thought I was a whiner since whenever they'd ask me "why not?" if I didn't want to do something I'd respond with "because it hurts." but my rheumatologist did take care of that with the NSAID.

At this point, I too just want help & I want answers, so I hear you loud & clear!

#6 georgette

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Posted 08 August 2008 - 11:18 AM

g'day gina, it sure sounds like your displaying symptoms os scleroderma , I to am from australia , sT vincents hospital victoria have a specialised department for sclero research and treatment as well as support groups around australia .check out there website ......also with my sclero the first ana test came back negative at that stage my fingers were just puffy ,like sausages ,but a few months later as the sclero settled in I went for another test and it came back positive , my fingers were then starting to curl , so from my perspective it is all about timing , once the sclero settles in it seems the ana shows up so dont be dismayed , good on ya for researching and yah dont the doctors he get so miffed when ya do it !!!! for me also it was me who diagnosed my condition !!!! and the blood tests confirmed my suspicion , doctor was not happy lol hang in there hugs georgette

#7 luvbnmom3

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Posted 08 August 2008 - 12:55 PM

gina.... sorry my message is so long, Now that I see it posted it looks like a book! I wanted to tell you my symptoms that are like yours... I probably could've just listed the similar ones instead of elaborating!

I gotta work on that! Anyways, I hope you find some answers! Have any doctors ever put on on an NSAID to take regularly for the pain? If it is imflammatory, maybe that would help?

#8 gina

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Posted 08 August 2008 - 03:44 PM

It's very nice of you to tell me your story.They did put me on a tablet,but it made me scattery and didn't work.I just need to find a doctor who believes in my symptoms and doesn't treat me like a hypochondriac. Unfortunately I can't take anti inflammatory because of Gerd. Please keep me updated on your condition, if you feel comfortable doing that.

Thanks to everybody for your replies. It is really nice to talk to others on my level. I appreciate your support and wish you all the best too.

#9 jefa

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Posted 08 August 2008 - 09:20 PM

Hi, Gina, and welcome to the ISN Sclero Forums. As you are starting to learn, we have several forum members from Australia who are familiar with the Australian health system and its idiosyncracies. I understand your frustration with trying to find a diagnosis, but your statement "I am not going back to doctors and I will deal with it the best way I can." worries me. You don't mention what kind of tablet your doctors gave you that made you scattery. I can't imagine any medication for GERD which would be addictive. As for anti-inflammatories, my doctors prescribed a proton pump inhibitor (omeprazole) along with an anti-inflammatory to counter the effects, and taking this made me fully appreciate how bad the reflux had actually been before that. You should be seeing a good rheumatologist, preferably with a knowledge of scleroderma. If your clinical symptoms do not yet allow for a diagnosis, you should be treated for the symptoms you have (which is what would be happening even with a diagnosis). Get treatment for the Reflux. If you have been diagnosed with Rheumatoid Arthritis, you should be receiving treatment for this. If your Raynaud's is severe, there are treatments which will help that as well.

Here are some links to our medical pages which may help:

Esophagus: Reflux (Heartburn) and GERD

What is Raynaud's?


Warm wishes,
Jefa

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International Scleroderma Network (ISN)

#10 gina

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Posted 09 August 2008 - 10:12 AM

:angry: It's 4.46 am iv been up for days.MY LEFT hand is curled and hurts.I have 5 children and work 5 days a week,and I know there are so many more people worse off then me.I can't keep up any more,having a shower and I need to rest,im finding it hard to walk with my breathing,joint pain and all the other little things.When I try to sleep I end up going to the bathroom every hour to pee but I only dribble most of the time.But that can change and its like tap.My ribs on my left side hurt and the skin is thick and lumpie its the same under my arm.Lumps on some of my toes and a little swelling on my ankels.I could cope with this if I new it will go away and not come back for a few years like it has before.But 13 years is enough,i am sick of smiling and saying im fine because that is what they want to hear.I wish I could just run away and be by myself and not worry about any one else for a change. and to be sick and say all these things im saying now to you.Deep down I want to find that doctor who will help me and not give up like this,iv always saw the brighter side and never said poor me.Now at this point in my life I feel so alone even with my husband kid's and family.I just need peace no more pain,i no what is wrong with me I just wish that one Doctor would really listen and say lets just try more test or we will get to the bottom of this sooner or later.All I ever got was take a pain killer if that does not work after a few weeks I will give you an anti-depressant to take the edge off.Its about time doctors did their job..

HEY IM SORRY FOR SAYING ALL THIS MAYBE IT MIGHT FEEL A BIT BETTER FOR DOING SO.

#11 smac0719

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Posted 09 August 2008 - 01:34 PM

Gina,

I am so sorry that you are in so much pain and discomfort. I do not know your pain, but please don't give up. It took me a number of years to be diagnosed and I went without pain meds the entire time because the doctors didn't want to give me anything without knowing what they were treating. I did not go as long as you have, but I had to be dilligent in finding a dr who was willing to stay the course with me until we found a diagnosis.

I wish there was something more we could do to help you in your quest, but please continue to post. If nothing esle we can offer some emotional support.
I may have Scleroderma, but Scleroderma doesn't have me!

#12 Kamlesh

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Posted 09 August 2008 - 03:32 PM

Gina,

I have also gone through issues with acid reflux, Scleroderma, and Depression.
My acid reflux was better with Aciphex than Nexium. Regarding the surgery, I hope you are talking Fundoplication I went through Toupet Fundoplication to shape my LES valve correctly and do 180 degree wrap. None of the surgeons would agree on complete wrap due to scleroderma. Finally, Dr. Campos from UCSF agreed for surgery and I am doing well. I do not take any acid reflux medications any more.

I agree wit Sheryl. I believe treating scleroderma will help take care of many problems. Scleroderma can be managed with appropriate medications. I took Cellcept for almost two years. Now I believe my scleroderma is in remission. Thanks to all caring members of this group, I would not done so much better without their support. Many of my doctors were surprised with amount of scleroderma information I had.

I have been doing much better at depression these days mainly because I am trying get internally strong and I am at peace internally. I do regular yoga, breathing exercise, and walking 2-3 miles everyday.

Yes, last week I was able to jog for over ¼ mile, which I have not done for many years. Now I am enjoying every moment of my life. I am stronger person after going through scleroderma.
You can also take care of health issues.

Take care!
Kind regards,

Kamlesh


#13 georgette

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Posted 09 August 2008 - 04:33 PM

dear gina , you poor lady , no wonder you are beside your self with dispair and discomfort !!!!!! 5 kids ,a husband, a full time job , riddled with pain and no doctor is listening !!!!!!! your post certainly sounded like your on the edge , so can I suggest to you on monday morning go to your local doctor and get a referal to see the doctor I was telling you about (rhumitologist) you definatly need some medical intervention , I'm sure you will find that he will listen ,and start treating your psyical ailments , I'm NO fan of doctors at all but I have to say this one does listen and does not suffer from the usual arrogence of many doctors , give him a go gina , you've got nothing to loose butplenty to gain , good luck hugs georgette

#14 gina

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Posted 09 August 2008 - 07:20 PM

Thanks everyone for your support. I have been really encouraged, and I am getting on top of it. I have not lost hope, and some of the information you guys have given me has been amazing. I really appreciate it.

Regards Gina

#15 Peggy

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Posted 10 August 2008 - 01:25 PM

I don't live where you do and don't know the doctors per say, but I can say that I can relate to what you are dealing with. I too for over a year when from doctor to doctor before I finally got in front of one that took me seriously and was bound and determined to "put the puzzle pieces together". I was elated to finally find one that actually listened to me and didn't think it was all in my head. Then to find out how seriously ill I really was made me realize that I was blessed in that I didn't give up on "MYSELF". I knew I was sick and I knew there was something wrong. Fortunately my family agreed and were supportive in my search for answers. So my advice is listen and go to a specialist rheumatologist who knows sclero so you can get answers. You are dealing with so much and you need help. We are here for you and you have found a great place to go to for answers, advice, and kind and wonderful people.

Good luck and warm hugs,

Peggy

#16 kelowna52

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Posted 10 August 2008 - 02:38 PM

Hello Gina, I totally understand what you are going through. Over the past 6 years it's been a roller coaster for me as well, but since I had my Gall Bladder out at least the reflux doesn't seem to be as bad. I do have to watch what I eat though. I moved from California up to Washington, and I have had trouble with doctor's as well. It can be very frustrating to get a diagnosis. All of my doctor's in California agreed I had Scleroderma, here there on the fence about the whole thing. So day by day I put up with all of these syptoms, like you mentioned and go on with my day. Good luck to you and believe me this website is wonderfull.

Jackie S.

#17 JJ-Knitter

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Posted 13 August 2008 - 04:54 PM

Hi Gina and Kamlesh,

I had a full wrap fundoplication last year and it's like having a new life. Just getting the awful GERD sorted out has made it easier to do all the other things we need to do, step by step, one problem at a time, to feel and stay as well as possible.

Gina, don't give up. I don't think many of us got a quick diagnosis and most of us at one point felt the doctors were convinced it was all in our heads. :D

If you can get a formal diagnosis for each problem (GERD, breathing problems, what sounds like some hand contractures), maybe from a different doctor (GI, pulmonologist, physiologist), then the sum total of 'official' diagnoses would be enough to take to a rheumatologist who knows about sclero and enable him/her to finally say it is sclero.

Do you have anyone who can be an advocate for you? We often think about our spouses, but I left my husband at home and took my best friend with me. I told her she had to be my voice because I was feeling really fragile. I think just having her there made the doctors take me more seriously.

Don't ever be afraid to vent here on the forums. We all hit the wall sometimes. We're here for you.

JJ

#18 gina

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Posted 15 August 2008 - 04:12 AM

:) :)

I just want to say to everyone, I feel a lot better this weekend. Mentally! This is because I have had an email from Celia from this forum, giving me great resources and contact details in Australia, including phone numbers, availability days, addresses etc.

It is so nice to be able actually vent on this forum and not always on the people I love. I am going to see a different general practitioner next week and get a new referral and I feel hopeful.

A special thanks to Celia and everyone else who has given me support and advice.

PS: This forum is wonderful!

#19 JJ-Knitter

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Posted 15 August 2008 - 10:14 AM

You're wonderful too!

#20 razz

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Posted 15 August 2008 - 11:27 AM

Gina,

I am relieved to hear mentally you're feeling better. Dealing with so many different symptoms and especially pain is hard for anyone. :( This makes it difficult to think or even function. And, not having anyone nearby who understands or can relate to your situation, only makes it that more difficult. Even though I did have an aggressive form of systemic scleroderma, some internal organs were not extremely affected and I did get pain relief when the disease became progressive, so I am fortunate. Depending how close you live to the nearest metropolitan area, could affect your access to knowledgeable rheumatologists and current up-to-date medical treatment. I'm glad some people here were able to connect you to the nearest medical facility, ISN support groups in Australia and help you feel better. Words have the power to heal.

This is truly a caring and supportive group. If you need to vent, feel free to do so. :)



Lots of hugs,
Razz
Live well, Laugh often, Love much