gina

My Story

25 posts in this topic

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.

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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

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:) :)

 

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!

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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

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Gina,

You sound like you are about to jump out of your skin and with good reason! There is nothing more frustrating than to be suffering and to have no one in the medical establishment listen and help. I hear your pain and frustration. I know your have had your fill of doctors who don't get it but try to get to the one who was mentioned who does understand scler - you may just find that you can finally get some genuine understanding and some real relief. You won't be cured but your symptoms will be managed and perhaps you can be made to feel much more comfortable.

 

I am glad though, that when you were feeling down and miserable that you did vent to us so that we could be there to support you. I hope that the contact information yields a positive connection for you and that you start feeling better immediately. You are on the right track and we are here if you need more support anytime. Feel better!


Smurfette

 

Chocolate, It isn't just for breakfast anymore!

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Gina,

I would like to tell you my experience. I was diagnosed 25 years ago by biopsy and tissue samples evaluated by experts that I have scleroderma. My symptoms have been mild over the years, I have edema rt leg, severe reflux and fatique are main problems. I have found over the years when I go to the doctors they completely ignore the scleroderma. My feeling is that they just have such a poor understanding of the disease they do not know how to deal with it. Now I have a good general practitioner that listens to me, but recently when I went to new GI doctor that was very rude to me and said to me after I told him about the scleroderma he said almost shouting "You had scleoderma, but you dont have scleroderma now" when I tried to explain to him about it he cut me off repeating "You had scleroderma but you dont have scleroderma now". Again I tried to explain to him and again he cut me off saying, "Well you face doesn't look like it". Of coarse I was in shock at this point. This is why I have tried to avoid doctors over the years, they just dont understand the disease. I was so sick when I went to this doctor, I had lost 10 lbs and was only able to take liquid diet due to the pain, and he treats me this way. I found this forum then and read every post on reflux and got myself straighten out and can now eat well, I asked my general practitioner for reglan and that with prevacid solu tabs are working well. My point is I think it is important to go to doctors that have an understanding of the disease.

 

Carol lee

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Hi, Carol. I dont think I have had a chance to welcome you to the ISN Forums - glad to see you are finding your way around OK. I have had a couple of doctors who upset me over the years, and I try to give them the benefit of the doubt - once. You never quite know what went on before your arrival to prompt such a response. Still, there is no reason for a medical professional to behave that way. I think I would look for a different doctor. My current general practioner was a bit rude to me on our first meeting, so much so that I avoided him for months. I saw others for awhile, then got him again unavoidably at one point and he was fine. He has become my rock and the one person I can always count on to work with me.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I did not go to the doctor this week, I think I'm too scared of one more doctor telling me the ANA test is negative. I have lumps on some of my toes and one of them gets a small white sore on it. Would any one know what that is? Thanks again everyone for your kind words. Its nice knowing that you all know what it's like to have bad days. :) :) :)

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Gina,

 

I hope you will get the help you need. I understand your fear that the Doctor will disregard your symptoms. When I go into the doctor now I take my husband with me and it gives me more courage to stand up for myself. It is hard for me because I wait to go until I feel so rotten I can not think straight and express myself well. I hope you can do something to relive some of the stress on yourself, and to get yourself the the help you need, you have a large family that needs you to be well. You also might be helped to see a dermatologist to look at the sore on you toe.

Take care of yourself,

Carol lee

 

Jefa,

 

I will not go back to that GI doctor. I did have a great GI doctor 8 years ago when I had esophagitis and gastritis I started on prevacid then. But now with my HMO I can not go back to him. But I will find another one that I like.

Thanks so much for the welcome,

Carol lee

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