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Been Given The Run Around

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Hello to everyone,

Just thought I would share this with everyone. As you all know from my last post about my ECHO apparently it showed the PA pressure is 50 and I was told that I need to have another more thorough ECHO tomorrow as they strongly suspect that I have Pulmonary Hypertension. I have Crest/Limited Sclero.

I have had shortness of breath again since last night it is only mild this time but still it is there. I have been trying to contact my rheumatologist at the hospital where I go to all day to find out whether I need to go to accident and emergency at the hospital because of my SOB . Apparently I can not change my rheumatologist appointment to make it earlier as the clinics are fully booked out.

So I have to wait another 3 weeks before I can see my rheumatologist and discuss my ECHO results. Apparently my rheumatologist knows that I have called and has passed a message onto another Sclero doctor to call me regarding what to do . I still haven't heard a thing from anyone. Which is just typical of doctors!!!

what I was wondering is do you think that 3 weeks is too long to see my rheumatologist about the results of my Echo considering my symptoms?

If I do have PH can it get any worse between now and then?. My pulse upon awakening this morning was 121 BPM resting and it hasn't got below 100 all day.

I did go and see my local doctor today and he tried to call my 1st original rheumatologist who ordered the Echo to find out the results officially and she was so abrupt with him and told him she would fax the results and hung up the phone. My local doctor was disgusted with her manner and said he could understand why I chose not to go back to her as my specialist. He checked my blood Pressure which was o.k, but said my pulse was rapid. He really didn't know what to do or say so I left again with no answers. I have to go to the hospital tomorrow morning to have my ECHO do any of you think that I should go to Accident & Emergency at the hospital if I am not feeling any better?.

Any way enough of my whining I am a little confused about what to do.


KInd Regards

Celia :blink:

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Well I think you will be alright but you are going to have the echo redone today. So if anything changes they will see it and go from there. I know a lady that had one done and got the results of having PH and she waited about three weeks to get back in and was fine. They did put her on a med and she is doing pretty good now. But agian we are all different with this disease. Just hang in there and let us know what the second echo say's. Sam


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WOW - you are certainly being given the run around by that first rheumatologist, but apparently it's not just you considering how she treated your primary doctor. Stay away from her if you can help it.!!


It's good that you are getting your ECHO tomorrow. Remember that the technicians are usually instructed to retain the patient if they see anything life threatening during the ECHO. That's what I've been told anyway. (Actually, I did experience it a couple of years ago when my EKG showed complete heart block. The technician responded immediately!) So since your heartrate will be monitored, if the technician sees that as a concern or anything else for that matter, she'll possibly consult a doctor before letting you leave. You could always ask the technician if she sees any problems that would require you to see a doctor ASAP. She may or may not respond but it never hurts to ask.


Please let us know how it all goes and how you are feeling. I'm sending you some

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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Hey Celia,


Oh I am so sorry - you shouldn't have to go through this. I will look forward to hearing about your ECHO results. If you are having any doubts about your SOB etc, it would be your best bet to go to the ER just to be on the safe side.

Your Friend,


Gi Gi

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