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Dr's Do They Really Care?


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#1 Sharonvandee

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Posted 11 September 2007 - 08:43 PM

Lately it feels like every day is a battle. I no longer eat, just liquids and even that leaves me feeling like there is somethings stuck, I am breathless and my muscles ache, I feel like half the person I used to be and yet everyday I hop up and try and pretend this is not happening, quickly though your body has a way of telling you otherwise.

The Dr here seem to care little, the rheumatologist says we can't help till you aree really sick and have skin invovlement, the cardiologist has a 5mth wait, the gastrenologist, who I am waiting to have surgery with that was 4 months ago says it will be a while yet before I get to the top of the list.

I see how much this effect my husband and children and it makes me want to cry why are Dr so uncompassionate and there bedside manner so lacking.

It is a disgrace that Australia calls itself the lucky country yet people that need medical care can't and dont get it till they are desperately sick.


sorry about the ramble I am just so frustrated and tired of all the hurdles, for no gain
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#2 Maddy07

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Posted 12 September 2007 - 12:34 AM

I'm so sorry and just wanted to reach out and give you a virtual hug. I know no words can erase how you're feeling, but know that lots of us "get it" and wish it were different for you.

I don't know the Aussie medical system but I hope that there is some way to rush the process, or let your general practitioner know that it's gotten so much worse, or? You DESERVE better. Is there someone who acts as a patient advocate in these kinds of situations? If so, I'd be on the phone ASAP!

Hang in there and I hope tomorrow is a better day.
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#3 nan

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Posted 12 September 2007 - 02:44 AM

Sharon,
I am so sorry that the doctors are being such idiots. I agree with Maddy. Can your general practitioner speed up the process? I think if you're breathless and not able to eat you are serious enough to warrant attention. I send you a big hug! :D
Nan

#4 Sheryl

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Posted 12 September 2007 - 07:25 AM

Sharon, what type of surgery are you planning on getting from your gastroenterologist? Is this something in regards to reflux or intestinal? Hopefully, it isn't something that will get worse while you are waiting. It is a shame that so many countries are not getting the medical treatments that use to be available to the people whenever it was needed. Our medical treatments are not getting better over time. This wait and see attitude is scarry sometimes. Hopefully, you are functioning normally. Sheryl
Strength and Warmth,
Sheryl

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#5 Sharonvandee

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Posted 12 September 2007 - 11:07 AM

Sheryl

I have a hiatus hernia and no function in the lower sphicter valve which means for the past two years I have up to 150 reflux episodes a day. The number of episodes arent any worse but the damage the acid is doing is what worries me, I have tooth decay, damage to vocal chord and damge to esophegus and lungs, I get alot of pain, but still over here I have waited 5 mth for them to do a gastroscope so that the specialist can decide if he can do a fundoplication and hernia repair.
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#6 jefa

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Posted 12 September 2007 - 11:25 AM

Are you taking a proton-pump inhibitor to reduce the acid? Are you sleeping with the head of your bed elevated? Do you drink caffeine, alcohol, eat chocolate? 150 episodes a day seems like a huge amount - that's every ten minutes 24/7. If the situation is this bad, you should be escalating your complaint to a higher management. Most health systems have some sort of facility for making formal complaints. You are the only one that can fight for yourself.

When I was waiting for the NHS to come through with my diagnosis for cancer, I wrote a letter to the head of the department that was giving me difficulty and I got called in the next day for an ultrasound and had surgery scheduled within a week. In the letter. Please speak up. Don't just wait.
Warm wishes,
Jefa

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#7 lizzie

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Posted 12 September 2007 - 11:27 AM

Hi Sharon, sorry to hear that you are having such a bad time - it musy be very frustrating when you can't get the treatment you need. Are you taking a proton pump inhibitor - if not I think you should ask your general practitioner about prescribing one for you, and if you already are taking one it sounds like you might need to ask about a hgher dose or even to try a different one. My rheumatologist said that people with SSc often need triple the normal dose. I'm sure that they should be able to control the reflux better than they are. Reflux can also cause breathlessness.
Lizzie

#8 Sheryl

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Posted 12 September 2007 - 11:35 AM

Sharon, thanks for responding. I didn't know that a hiatal hernia could be repaired surgically. I have had two and one has already healed the other is in the process of healing. I can't believe the time frame you have to wait for relief of pain. Are you taking any prescriptions for the healing of the esophagus? I have had tremoundous relief from taking Nexium and Reglan prescriptions. Those will maybe help for the time being if your family physician will prescribe them for you. Sometimes anything from any doctor will help reduce some of the symptoms. They sure help out with the chest pain and the bile backing up into your throat and mouth. I hope your wait won't be prolonged. I will have to look up fundoplication. I forgot what that is. I know others have had it done. At the moment the reflux is one of my biggest worries also. Scarry, what can develop if nothing is being done to get relief. Good luck Sharon. Sheryl
Strength and Warmth,
Sheryl

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#9 Margaret

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Posted 12 September 2007 - 01:35 PM

Sharon ,

Sorry to hear that you can't get any help. Will your general practitioner prescribe any meds till you see the other doctors? Gareth started on Plaquenil and now tells me his 'esophagus is working' , he doesn't sleep all the time, and he has his voice back, too. He has never had skin issues....just positive blood work and internal issues. Maybe the doctor will at least let you start some meds to see if they can offer some comfort to you.

Take care, Everyone.
Margaret

#10 janey

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Posted 12 September 2007 - 04:28 PM

Oh Darlin'
Lots of Big, big hugs to you! I'm hate it that you are suffering so and that your doctors seem to be in a wait and see mode. Has your rheumatologist every heard of scleroderma sine scleroderma? This is a type of systemic scleroderma that does not have skin involvement. I've provided a link for you. Maybe you need to print out some of the article and give them to your rheumatologist.

Sometimes it's hard to be assertive because of personality, the system and other reasons, but it seems like it's time! You really need to push to see another doctor or have your current doctors start treating you. With as much GI involvement that you have, I'm shocked that a doctor isn't jumping on top of this and working aggressively to find a solution.

Please hang in there, but start pushing from your end. Come here for big hugs, but get after those doctors of yours to help you!

Big Hugs,


Janey Willis
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#11 Sharonvandee

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Posted 12 September 2007 - 07:15 PM

Hey

Thanks for all the love and support that this forum gives.

I am currently on 40mg somac twice daily and 10mg adalat twice.

I sleep with the bed raised and dont drink coffee anymore :( but you do what you got to do.

I am of to the general practitioner tomorow and after a quick phone to explain what is going on he is going to try and put a little pressure on the gastroenterologist so we shall see how that goes.

In the meantime thanks again for your caring words and thoughts
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#12 Sheryl

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Posted 13 September 2007 - 12:23 AM

Sharon, If your reflux is terrible they should increase your somac. If the somac is to be the next drug of choice over nexium then it should work. One 40 mg pill a day won't work with the severe reflux that sclero patients have. It is not like it is regular everyday heartburn. I take 40 mg of Nexium 4 times daily and also Reglan 4 times daily for the severe esophagus/reflux problems. Maybe your general practitioner will increase your dosage to so something that might do more than put a mask on the situation. Reglan helps to cure or ease the pain of reflux. For the last several months I have been only taking two of each of those prescriptions because I have been so much better. I hope you have a good doctor visit. Sometimes they are totally wasted it seems. If you are taking in mostly liquids and not eating spaghetti and pizza then you shouldn't be having this severe problem. Lifestyle changes are hard to get use to. Sheryl
Strength and Warmth,
Sheryl

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#13 Sweet

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Posted 13 September 2007 - 10:25 AM

Hello Sharon my love ~

One great big warm hug coming your way. I am so sorry you are not getting the medical attention you so desperately need! It's been very interesting to me to see the "lack" of care in both Australia and New Zealand since I've joined this forum. Here in the U.S. we do think you guys have it made but I am quickly seeing that is not the case.

I truly wish you could get someone to take you seriously!
Warm and gentle hugs,

Pamela
ISN Support Specialist
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