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Getting an appointment with a sclero expert


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#1 serendipitydoodah

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Posted 25 March 2011 - 02:37 PM

I got in touch with a scleroderma expert center listed on the ISN SCTC list. They told me the intake process was to have my primary care doctor fill out a referral form. I scheduled an appointment with my PC doctor for April 4th. I was wondering if anyone has had trouble getting their PC doctor to refer them to a sclero expert? I fear that I'll go to the appointment and ask for the referral only to be turned down. I know I'm jaded from my recent experience with doctors not listening to me, so I'm probably fretting for no good reason.

#2 Shelley Ensz

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Posted 25 March 2011 - 03:03 PM

Hi Serendipity,

Any decent doctor welcomes input from any other specialties. It will either confirm what they already believe or give them new insight in managing your case.

Take in a Scleroderma Symptom Checklist with you. Check off all that apply, keeping in mind that many symptoms overlap with many other illnesses. Things like tight skin and pulmonary fibrosis are more specific to scleroderma and more likely to lead to a diagnosis.

If your doctor totally disagrees, be sure to listen to them and consider their reasons, because self-diagnosis poses grave dangers, especially in those of us who have no formal medical training.

You will want documentation of each of your symptoms to take to the scleroderma expert, and hopefully you will be going with the backing of your local medical team. That said, many people have had resistance from their local doctors but had their worst fears confirmed only at an expert center. So, who is to know what will happen in your particular case?

Here's a group hug, just for you, come what may.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 serendipitydoodah

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Posted 25 March 2011 - 03:40 PM

Thanks, Shelley. I printed the checklist (I can check off 6 boxes) and will be sure to arm myself with as much documentation as I can.

Since I'm new here, I'll add a little background information to this post. I was "diagnosed" with scleroderma by my primary care doctor in January of this year. In the previous months I had come to him with Raynaud's, a sore throat that lasted 3 months, and a random swollen ankle that I couldn't walk on for 2 days. This prompted some blood work, which came back with an ANA 1:1280 with a centromere pattern. He ordered baseline tests for heart, lungs, kidneys, etc. and also referred me to a rheumatologist. The rheumatologist initially told me I have CREST and then at the next visit a month later told me all of my symptoms were related to stress and she wasn't even sure if I had scleroderma. I think this was because the tests on all my internal organs looked good and because she couldn't see any skin symptoms (but she wouldn't even look!). In general, our personalities clashed and I asked my PC doctor for a referral to a different rheumatologist, with whom I've yet to setup an appointment.

My medical history also includes a year or so seeing gastro doctors about mystery abdominal pain near my belly button. The pain was of the worst variety I'd ever felt and they couldn't figure out what was causing it. The best way I can describe it is that everything would "lock up"; like I had an obstruction. I went thru the battery of gastro tests only to find minor reflux, one benign polyp, and biliary dysfunction. They removed my gall bladder and that helped, but the pain never completely went away. I was referred to a U of M gastro specialist who diagnosed IBS and functional dyspepsia (motility disorder).

I've had symptoms of Raynaud's for many years but it never bothered me much until this winter when it started getting severe. I also think I've had some skin involvement (thickening) for years without knowing what it was. For at least 10 years I've had tendonitis in my left shoulder/back that quite often gives me trouble. I've also had (starting at age 5) surgeries on my hands to release caught tendons and I periodically get steroid injections from a hand specialist to treat tendonitis in my fingers.

I think I deserve to see a sclero expert and I hope my doctor agrees! Thanks for the group hug. It's been a long week of cold temperatures and I sure needed it. You guys are the best!

#4 Joelf

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Posted 25 March 2011 - 04:02 PM

Hi Lesley,

I'm in the UK and we have a slightly different health system to you, so I can't really add to the excellent advice Shelley has given you.

I was very fortunate in that my general practitioner (that would be your primary care doctor) and the local consultant to whom she referred me realised that I had a problem with my lungs that was outside their expertise and referred me double quick to a top lung specialist hospital (I'm eternally grateful to them for their speedy action! ;) ) They started my treatment and it was only after that I was referred to a Sclero Rheumatologist.

It's such a shame that you haven't had more support from your first rheumatologist and I do hope that your doctor will be able to get you an appointment with the Sclero expert of your choice.

Do please let us know how you get on, won't you?

Jo Frowde
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#5 enjoytheride

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Posted 26 March 2011 - 01:55 PM

I do think that most doctors would not have any problem with a referral for a second opinion.

I have started working on a referral for myself. My trouble is that my primary doctor and the only rheumatologists in the area are in the same practice. This makes it a bit more difficult for him. So I asked the rheumatologist herself for a referral to the UCSF clinic. She's gone on vacation for a week but I'll see when she gets back. Since she said that I have some symptoms that fit and others that don't, she may be OK with it.

But it will happen one way or another. Sometimes it just take persistance.

#6 Indy

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Posted 27 March 2011 - 06:31 AM

I'm new here. I note that you referred to a list for sclero experts. Can you tell me where I can obtain or look at the list? I don't understand this disease. I have limited scleroderma and don't understand what it means. I have a great rheumatologist but she doesn't really explain anything as to what she is doing and I'm too naive or afraid to ask what any of this means. Is my level just discomfort here and there in life or is there potential for this to be life threatening? I don't understand.

Can someone help me with an answer? My main reason that I went to the doctor in the first place was my persistent cold intolerance that is getting worse. Raynaud's was diagnosed. That seemed to be it, no big deal...but then out of the blue, I go to the doctor for a check up and my blood pressure is really high for no reason. I'm a runner and am in great shape. I had just run a marathon the week-end before my appointment. There should be no reason for high blood pressure. Then other things are popping up...severe constipation (with disabling cramping just at times) and heartburn, trouble with swallowing. I don't have any pains or anything. Does all of this mean this disease is progressing. I don't understand? Will this all get better and then subside and maybe flare up time and again or is it always here?

Again, my main question is, is this life threatening? Or is it just an annoyance but you can live with it? Anyone who can help me understand this, it would be appreciated.

#7 queenie

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Posted 27 March 2011 - 06:15 PM

Hi,
I attended my general practitioner last week to start the ball rolling to see an expert from the list here on the website and I was absolutely dreading it and thought she would deny it but as it goes I was worrying about nothing as she was glad to do the referral. She said the only thing was because the specialist nearest to me is out of our area she has to apply for the funding to be paid but she explained it all to me and said that there should not be a problem as I have already seen a local rheumatoligist in our area which is something they require before they will consider you being allowed to go out of your own health care so she has made the application and will ring me as soon as she hears from the board. She was very positive and seems to think there will be no problem at all; all I did have to do was to get a load of bloods done so she can include them in the application and a few more recent x-rays as it has been over twelve months since I had the full monty done.
I hope things go as well for you
take care
hugs and loves :emoticon-hug:
Queenie x

#8 judyt

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Posted 27 March 2011 - 06:59 PM

Hi Indy,
Sorry to hear that you are troubled by not knowing enough about your problems. You sound a lot like me. I have just turned 67 years of age and I have had Sclero symptoms since at least 1966 when we were in the UK. First of all I started getting very cold hands and feet and terrible migraines. I was newly married and on our OE from New Zealand so I was far away from any support except my new husband who didn't know diddly squat about anything medical!! As we continued with our adventuring I discovered I was not as fit as I would have expected to be but just thought I was lazy.

Next stop was South Africa for a few months and there I found out what Raynauds could really do. I didn't know what it was but going from hot outdoors to air conditioned indoors was murder. As well I had started getting gastric pains and heartburn - once again naively thought it was my own fault for not handling stress properly, or some such nonsense.

Move on to the 1970's and small children in the house and a business to help my husband to run and I found I just couldn't do it. What with the headaches, varicose incompetence, heartburn, and now a bowel prolapse and inexplicable out of control hypertension. Still no explanation but to try harder to keep the stress under control!!!!! Yeah Right!! as we say down here.

In the 1990's I found I couldn't swallow - everything got stuck half way down. My general practitioner sent me to a Gastro man who diagnosed a damaged oesophagus from the reflux and after dilating the oesophagus and giving me life long acid reduction meds. said that was it. Still no diagnosis.

Fast forward to 2003 and I ended up in the Emergency room with a haemetemesis (vomiting blood) and at last somebody put 2 and 2 together and came up with CREST or limited scleroderma.

The good news is that I am getting proper care now, have educated myself well about the disease, don't beat myself up too much about being unfit and I am enjoying a reasonable quality of life considering all that is going on.

I have been through the panic stage - thinking my days were numbered - but now I just count my lucky stars that each symptom has been treated either by surgery in the case of the bowel or by meds and lifestyle adaptions and I do what I can and don't do what I can't.

My general practitioner is great. I tell her everything that happens and she notes it down and every little while decides I had better have another round of tests to check up on things. In our part of the world there are no Scleroderma experts but the specialists I see all know enough to be helpful and because I am well educated (about my disease) they listen to me.

Take heart all is not lost, I fully expect to still be bothering my kids in another 20 years and I hope you are too.

Warm hugs from downunder

Judyt

#9 enjoytheride

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Posted 27 March 2011 - 09:37 PM

The link to the forum's list of experts is http://www.sclero.or...rts/a-to-z.html

I'll let others who are much more experienced answer your other questions. One of the real problems with this condition is it is so variable. No one is quite the same.

A good thing would be to start your own thread especially if you can give more information on your recent medical test results and symptoms.

People here are very helpful.

#10 serendipitydoodah

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Posted 04 April 2011 - 11:38 PM

I got the referral to a sclero expert with the full blessing of my primary care doctor! And to think I was even worried. :nervous: The doctor is faxing over the appointment request and all the supporting lab work, files, etc. Now I just wait for the U of M people to call. I'll try my best to be a patient patient.

#11 Joelf

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Posted 04 April 2011 - 11:55 PM

Hi Lesley,

What excellent news; I'm really pleased for you! :emoticons-line-dance:

Hopefully now you'll be able to have a little more confidence in your Sclero specialist, and feel that you're getting somewhere.

Let us know when you get your appointment and how you get on, won't you?

Jo Frowde
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#12 Snowbird

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Posted 07 April 2011 - 03:36 PM

That's great news. I'm glad it worked out and hopefully soon you'll have an appointment. Hope you keep us updated on how it goes!
Sending good wishes your way!