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Janet A

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  1. Dear Joelf, it sounds like that is the way to go. Thank you kindly.
  2. Shelley, I do appreciate the info. You are right; I am distressed and depressed. I keep thinking that there might be something they could do about my extreme fatigue, sensitivity to cold, many GI problems that I have and did not seem to respond to meds for my GI symptoms, except one to certain extent, that is. I must admit, certain symptoms scare me and I would get a panic attack on top of that. For example, when what I eat feels stuck on my esophagus, or not being able to take steps due to extreme abdominal pain or extreme fatigue, etc. I am scared that these symptoms won’t get any better. It’s been over 3 years and some of my symptoms have gotten worse. We have tried 2 different antidepressants and the side effects make my symptoms even worse. I have gone to doctors begging for relief and help, not only with facts. For example that was very much my first visit to the rheumatologist; I remember telling her that she was my only hope and I was desperate. Well, after reading your message I can see what I’ve done wrong; taking my emotions and desperation in to their office and basically beg for a cure. Now that I look back, it seems so funny and a bit dumb to go in begging for relief. No wonder when she was organising all the tests for lungs and PAH she wouldn’t even tell me what they were for (although I knew anyway). She would say “I don’t want you to get scared or panic when you go to those places to get your tests done”. But to be honest I didn’t care if I had PAH or not, I just wanted a glimpse of what my body was like, 2-3 years before that, when I had a relatively better handle on things. Yes, I have gone to doctors feeling desperate, crying and begging every time. Your reply makes a lot of sense. I truly appreciate you sharing your experience and knowledge.
  3. Which one of the Scleroderma clinics in the list (in the US) would be particularly interested or good in cases with Gastrointestinal involvements? I would appreciate a specific clinic or a well known doctor in this particular area. Would you be able to help me? Kind regards, Janet
  4. Hello everyone, I tried to see a new Gastroenterologist for second opinion regarding my worsening symptoms. My general practitioner had written a referral and had faxed it to him. I was told by his office manager that he was not going to see me. There is nothing he could do for me!! I am in state of shock. He refused to see me outright. I really feel I need to get out of Australia and get an opinion from a gastroenterologist with some experience with Scleroderma patients and the symptoms or at least someone who is prepared to listen. It might not be scleroderma, might be something else with very similar symptoms. But they need to be up for the challenge. I feel extremely hopeless, helpless and lonely. No doctor is prepared to help me or even listen to me!!! There isn’t anything to help me with my symptoms? Really? I am totally distraught.
  5. Hello friends, I’m thinking of contacting a Scleroderma clinic in the US with a Gastroentrologist who has a good knowledge and experience with Scleroderma patients. While going through the info links I found in ISN, I am thinking of contacting Prof. Michael Brown in Rush University medical centre. I think I need to get in touch with the clinic and the Gastroentrologist before travelling to the US, so I know where I am going and I might even be able to get some of the tests done in Australia where I have insurance. Is there any Scleroderma clinic or doctor you recommend that deals with gastro issues? I am not doing well at all and I feel I have been getting worse. I really need help. Everyday is becoming such a battle and never ending struggle and I don’t have any energy. Exhaustion is unbelievable. My joints are aching more and the joints in my right hand are getting very sore. All I am on regularly is an antidepressant. Nothing to help with Gastrointestinal symptoms. Sometimes I feel I am literally suffocating and it’s so scary. Can you help me find the right clinic for me in the US? Kind regards Janet
  6. Thanks Pamela and Dimarzio for sharing your experiences with me, I certainly appreciate it.
  7. Would you be able to give me any idea of what the medical cost would be in the US? Roughly? You guys have been through this, I thought you might be able to give me some idea of what would be involved, time wise and cost wise in the US? Thank you again for reading my post and responding to it. I whine and whinge and carry on, don’t I? Kind regards, Janet
  8. You took the time to read my post, kindly, understandingly replied and even looked for a specialist in Australia! So, so kind of you, Pamela and Margaret. Thank you. I had been reading a lot about GI involvement & Scleroderma. Your replies encouraged me to read more and watch a few presentations by doctors in the US. I’ve been thinking about contacting a specialist in the US or even travelling to the US and go to a reputable Scleroderma Clinic and look for proper diagnosis if there is one for me. First of all I don’t even know what the medical costs are going to be in the US. Thousands, tens of thousands or even more. On the other hand, what if there is no cure or treatment for me? I just don’t see a point anymore. Doctors here don’t seem to care really. They see me in pain, they see me having real trouble walking at times, or crying my eyes out from all the pain, etc., but I keep getting sent back to the Psychiatrist. I am on antidepressant medication and to be honest I don’t see any point in seeing a Psychiatrist because I am in pain and I need relief. I am constantly exhausted. I have become a unreliable person. I am afraid of making simple plans because there is a chance that I can’t stick to it. Even when I manage to go somewhere I end up feeling embarrassed and regret attending any outings. I can’t sit for long, I look 7 months pregnant, in such pain most times that I can’t hide very well at all; I feel that I make people feel uncomfortable. I am fed up having to tell people about my chronic pain and everything that is going on. What if the doctors in Adelaide Scleroderma centre (suggested in your message Pamela) don’t take me seriously because I have already seen a Rheumatologist here in Perth who says regardless of my test results and symptoms I don’t have this condition because my skin is fine and the condition is rare? I don’t know about the US but I believe the Aussie doctors back each other up regardless. They wouldn’t contradict their colleagues. It was such difficult task even to find a surgeon who would be prepared to do a diagnostic laparoscopy, one year after my hysterectomy by another doctor. ( I live in Western Australia not in big cities like Sydney or Melbourne). I am so lost and exhausted. What do I do next? Where do I go? I have referrals to see a new Gastroentrologist and a pain Specialist. Is there a point? If there is one , what is it? My life has turned in to a complete disaster. I wish I didn’t have to think and there was someone who could make these decisions for me, find a good doctor, make appointments, do some of the talking even, etc. yep, even those simple things I am finding difficult.
  9. My sincere regards to you all, I am tired, in pain, and struggling. My story is very long and boring. Things went very wrong about 3 years ago. I became particularly ill after my hysterectomy which I thought was the cause of some of my problems. I started losing weight rapidly and developed a lot of Gastrointestinal symptoms. I started feeling the cold all the time and haven’t stopped since. I have a lot of abdominal pain and distension. I feel the food gets stuck in my oesophagus. I feel nauseous most of the time. Sometimes the abdominal pain is so great that even walking or sitting hurts so bad. For a while my doctors thought something has gone wrong during the operation but after a lot of investigation they couldn’t find anything. Eventually one doctor suggested that get tested for a few autoimmune diseases and I was ANA & SCL70 positive. I was referred to a Rheumatologist (one of the few doctors with special interest in Systemic sclerosis and one of the 8 on the advisory board of Scleroderma Australia.)After checking my lungs and heart, etc. she said I don’t have scleroderma because my skin doesn’t show any thickening etc and the type that effects the internal organs such as gastrointestinal system and it doesn’t effect the skin which is called “Systemic Sclerosis Sine’ Scleroderma”. She said I don’t have it “because it’s very rare”!!! I have done a lot of research and all my symptoms are those of what she called very rare, so I can’t have that. I tick all the boxes. Now, I don’t really care what it is called but it has destroyed me. The pain, exhaustion and all that goes with it has proved unbearable. Nothing seems to help. I have tried all sorts of medications and diets but nothing seems to work for me. I feel incredibly sad. I feel extremely depressed. I can’t see why whatever it is that I have, rare or not, just end it for me quicker and ends my suffering. I haven’t any direction or support from any of the doctors I have been to in terms of how to manage this thing. Every now and then I might feel a little bit better and immediately I think that it’s all over and start planning and get my hopes up. It doesn’t take long for the whole world to come tumbling down. Sometimes not even half an hour. I don’t know what to do. I have made my doctors to get blood tests done & check for SCL70 & it keeps being positive. My symptoms persist. I have no hope. No reason to go on. I seem to be forever in bed. Severe Gastrointestinal problems and joint pain in different areas that flare up badly, etc. I am so tired. I don’t know how to go on. I don’t know how to stay positive. I am sick of going to doctors and come out empty handed. Sick of explaining my symptoms to new doctors. I am drowning is an ocean of sadness and despair and don’t know how I can pull myself out.
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