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Frustrated And Ready To Give Up

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3 weeks ago I travelled to a clinic that deals with scleroderma hoping to get answers and a managment plan in place instead I am left feeling like DR, and specialist are a waste of time and now I even doubt myself till I go to do something that I no longer can or I get breathless.


The rheumatologist at the clinic ran stacks of test and said she would take a week to get back to my DR and still we have no results so we continue to wait.


The DR I have to see is a new one as my usual one is away for 5 mths (wouldnt it be great to have that long a holiday) and he at first seemed like we could work through this together but the visit yeasterday left me really bummed out. He talked about taking me of all medications incase they were causing breathlessness and then he said I think your breathlessness might be anxiety related and I want you to go on anti depressants, he has seen me three times each time struggling to breath and with a cough........hmm I am confused.


He ordered more test a barium meal and chest xray to discover if I have reflux, which has already been diagnosed by a Gastrolenterologist after PH test.


He commented you look less distressed with your breathing I tried to explain to him what has been happening at home and he just dismissed me all together.They dont see you when you can't breath well, your skin is blue, you can't talk because your thrat has given out and when your sitting eating mash or soup for the 20th time in a row whilst the family is having a roast. I dont know how to make them understand. Even the rheumatologist at the scleroderma clinic didn't bother to even look at my list of symptoms she didn't want to know she was just looking for skin involvment.


It makes me want to not go to Dr and it makes me feel like none of them believe me and now I dont even believe me even though Hubby tells me it is real.


sorry just venting and feeling a little let down by the people we are suppose to trust to take care of us

Kindest Regards




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


a little bent and broken and almost beyond repair!

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Hi Sharon,


I am so sorry. There is nothing more frustrating than to see a doctor that won't listen, or belittles what you are going through. I'd make a quick switch of a doctor or schedule another appointment and let him know how he made you feel. After all you are paying him. He needs to give you SERVICE.


Please don't doubt yourself, you know what your body is doing.

Warm and gentle hugs,



ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sharon,


I've been in the same situation all too many times with the "specialists," but eventually the breakdown from being dismissed passes, and I do look for someone that will investigate further. There are times it feels like having one horrendous blind date from you-know-where after another, doesn't it? My comfort in all of this is in having a general practitioner and another doctor that do believe me, even if they're not certain about making the formal diagnosis.


Whenever you feel frustrated, please do let it out, especially since so many of us can relate and may be able to give some comfort and even a bit of good advice. It can feel like life is somewhat on hold while trying to find "Dr. Right," but please remember that your hubby believes you regardless of the doctors' opinions, and frankly I'd rather have my husband believe me since he's the one I kiss goodnight. I hope that you can get your strength back soon and do continue to seek out good medical care!


Hugs to you,


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Oh Sharon!
I am so sorry that you had such a bad experience with the sclero "specialist". I can't believe she didn't look at your list of symptoms! So she didn't want as much information as possible in order to make a diagnosis? Also, doesn't she know that scleroderma doesn't always mean skin involvement?

I agree with Pam. Make an appointment with someone else ASAP. You have too many things going on right now with your health to ignore them. You need to know what's going on. Here is our page on scleroderma specialists and rheumatologists. Maybe you can find another rheumatologist in your area and possibly another specialist (although I understand your hesitation there).

Please don't give up. Your health needs to be addressed. Please make another appointment.

Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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