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More updated doctor troubles


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#1 amberjolie

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Posted 14 November 2011 - 08:32 PM

I knew it. I knew that I wouldn't be accepted by my husband's rheumatologist again. To make matters worse, because in Ontario you can't see more than 2 doctors in a year in the same specialty, I've been told I have to go back to my original rheumatologist, the one who told me I was bringing up too many symptoms each time I saw him. I'm not going back to him.

So essentially that leaves me with no rheumatologist until next September when my year is up and I can ask for a referral to someone else (which of course will take at least 6 months if not more). I'm not impressed.

#2 judyt

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Posted 14 November 2011 - 09:38 PM

Hi Amberjolie,
What a predicament and a very long time to wait. Are you able to decide to see somebody and pay the fee yourself? I know it is very hard to find a suitable person but surely you have some leeway to make decisions for yourself.

The other thing that can happen is to find yourself in a crisis situation :emoticon-dont-know: and finish up in the emergency room. That's how I got my diagnosis after many, many years of asking doctors what was going on and getting the shrugged shoulders treatment. I didn't fake the emergency but my general practitioner encouraged me to go back and say I was no better until I got some attention.

I don't count that as being dishonest because I was sick and so are you presumably.

Thinking outside the square might be called for. Or perhaps others might have some good ideas

Best of luck in finding a solution.

JudyT

#3 Joelf

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Posted 15 November 2011 - 08:12 AM

Oh no, Amberjolie; what an absolute pain! :(

I'm so sorry; you must feel incredibly frustrated. It seems that you just feel like you're getting somewhere, only to be back at square one again! I'm not quite sure how it works in Canada but in the UK patients can make a complaint through the Patient Advice and Liaison Service (PALS). I've put the link up for you, although I realise that the procedure's different in Canada but wondered if there was any similar system you could use?

I really hope that you can get the situation sorted, as the worry and stress aren't helping you either.

:emoticons-group-hug:

Kind regards,

Jo Frowde
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#4 Amanda Thorpe

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Posted 15 November 2011 - 06:00 PM

Hello Amberjoile

I am so rooting for you to get a good rheumatologist and a definite yes/no for scleroderma so this is not good news. I have no idea how frustrated you must be.

Take care.
Amanda Thorpe
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#5 amberjolie

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Posted 16 November 2011 - 09:46 PM

Hi!

I think the only way I could see someone by myself would be to travel to the United States, because in Ontario they have all sorts of rules about referrals and so on, so I don't think I could just see somebody, even if I paid for it myself. Although I don't have the money to do that right now anyways.

One option I'm thinking of exploring is trying to see if maybe I can be referred to a different type of doctor, for example, a dermatologist. Even if they're not a rheumatologist, maybe another specialty might be able to help me.

#6 Lynnie

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Posted 17 November 2011 - 06:43 PM

Oh Bless your heart Amber! :balloons: I am sooo sorry for the state you are in, I bet you feel you are 'flying without a parachute' .
I would love to know who makes up all these stupid rules that dictate these impossible situations I bet they are not sick and in need of help that's for sure.

The others have given you good advice, I would certainly head to an infomation centre over there that deals with difficult situations of a medical nature for advice, but, this clearly is not a ideal situation at all. This disease is a challenge in itself and without proper medical support and care impossible. You must fight this if you can.

I wish you well and keep us informed how you get on ok

Hugs
Lynn :emoticon-hug:

#7 Snowbird

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Posted 17 November 2011 - 07:56 PM

Hi Amberjolie

Sorry to hear your news. I didn't know that. I agree, one would think your family doctor could put the referral in now because guaranteed it will take some time to get in anyway just like you said. Did you try contacting the Scleroderma Society of Ontario? I have 2 names for you but don't know if I'm allowed to post that here or not....so PM me if interested.
Sending good wishes your way!

#8 Shelley Ensz

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Posted 18 November 2011 - 05:42 PM

Hi Amberjolie,

I think it is an excellent idea of yours for a workaround to try doctors in other specialties!

In fact what had helped piece together my diagnosis was seeing different specialists, and getting each symptom carefully documented. Those records and recaps turned out to be invaluable. Pick your 3 most pressing symptoms. Figure out which specialties might be able to properly address them and work on getting your individual symptoms properly diagnosed and treated.

I know this sounds odd, especially given how much we promote rheumatologists and scleroderma experts around here, but in some areas people simply do not have access to either rheumatologists or scleroderma experts and they often manage to get by surprisingly well by knitting together a team of experts for each of their major symptoms.

There are a few keys to managing things this way. The first is to make sure that you have a terrific internist (internal medicine specialist) as your primary care doctor. They are more advanced than regular family physicians and more adept at diagnosing complex illnesses.

The better the doctor, the better their friends. So work referrals from them to find your best specialists in the areas of greatest concern for your symptoms. With scleroderma that might commonly be good experts for dermatology, gastroenterology, pulmonology, etc. I also saw endocrinologists, vascular specialists (for Raynaud's testing and firm diagnosis), cardiologist, ENT, etc.

If you feel you are being brushed off because the doctors think you are a hypochondriac or depressed, then also see a psychiatrist and ask for a complete battery of tests to address those questions. Like as not, they'll figure out that you are having issues because you are ill, and not the other way around. If you do have any mental issues (many of us do), documentation that they are properly treated and under control is equally useful.

I am concerned about one line in one of your messages, where you said the doctor said you were "bringing up too many symptoms each time I saw him."

Did you know that some doctors hold the belief, however misguided, that anyone who presents with over 3 new symptoms at once, is automatically a hypochondriac? Seriously. I am not kidding. They exist, and you may have encountered one of them. My advice to overcome that is to NOT present those doctors with 3 or more symptoms at once. Instead, go to other doctors first and let them diagnose and document the symptom.

For example, do not go to Dr. Difficult and say you are having new symptoms of difficulty swallowing, fingers turning white when they are cold, and numbness/tingling/pain in your thigh. Instead, see an ENT to evaluate the swallowing, which could/should or at least might show up as being caused by scleroderma. See your primary care doctor or vascular specialist to diagnose and treat Raynaud's, and have them diagnose and treat the sciatica (which anyone can get).

Then, give Dr. Difficult only a single summary page from each doctor/symptom that documents those new symptoms. Then they are now "new" at that visit, they've been diagnosed by professionals so he doesn't have to worry about them, and he doesn't feel overwhelmed and inclined to dismiss everything with one wave of his hypochondriac hand.

In other words, if you know who/what you are up against, which in this case you might, it is perhaps possible that he could still be useful, if you play his game to your benefit. And never ever let him be the first to know about any new symptom! You don't ever trust him again with your new symptoms, only with your already-diagnosed ones, because he has already proven himself not worthy of dealing with your new, undocumented, symptoms.

At the least, you'll feel good because at least your symptoms are being addressed, and you are building up the documentation that will be very worthwhile once you finally see another rheumatologist or real scleroderma expert. In many areas, rheumatologists are so scarce that they may only be able to see a patient once or twice a year, and I've seen a few who are limited to only 15 minute visits after the first (usually longer) initial visit. So for many, it is our primary care doctor plus a few other specialists that provide the vast majority of our care -- both before, and after, diagnosis.
Warm Hugs,

Shelley Ensz
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#9 amberjolie

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Posted 18 November 2011 - 09:37 PM

Hi Everyone,

Snowbird:
I looked at that site and saw the two names for Hamilton - one of them is the one who rejected me! I've got the name of the other one tucked in the back of my mind to ask my general practitioner to refer me to once my year is up with the other one (or perhaps this second rheumatologist will refer me to this one).

Shelley:
Thanks for the really good info. I will definitely think about all my options, and the best way to approach them, although the retiring rheumatologist is willing to continue seeing me, just to keep an eye on things, so I think I will stay away from "Dr. Difficult", as you call him :) and wait to be referred to someone else. But I was thinking about a dermatologist, and perhaps there's someone else who is a vascular specialist I could see. Those I guess are the two major things right now.

I was seeing an internist, and a good one, but he's now just seeing inpatients at a hospital setting, so maybe I can ask for a referral to a good internist as well.

Good things to think about.

Thanks again, everyone!

#10 barefut

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Posted 18 November 2011 - 11:41 PM

Best of luck with your situation Amberjolie!

#11 Sweet

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Posted 19 November 2011 - 03:14 PM

I'm a little late here, but I'm with you in spirit. I hope that you can find a way around all of this, in order to get the care that you need. The governments (sometimes even here in the USA) can just get in the way! Best to you my friend.
Warm and gentle hugs,

Pamela
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#12 Snowbird

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Posted 19 November 2011 - 03:58 PM

Hi Amberjolie

I meant to actually call the society (I thought they were in Toronto but maybe not) and explain your situation over the phone, ie, the difficulty you are having to get to a doctor that knows something about scleroderma specifically and to see if they could actually get you in with someone else? They of all people should know how difficult this disease is to diagnose so maybe it would be worth a shot? I just know that I would try that in a heart beat if it were me, nothing to lose, everything to gain if it works? I have my specialist which is in London and the name of another that is also supposed to be very good in Toronto. Sorry, I don't know of anybody in Hamilton although it looks like you have that area covered anyway. Whatever you decide, I wish you good luck with it.
Sending good wishes your way!

#13 amberjolie

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Posted 19 November 2011 - 10:37 PM

Hi Amberjolie

I meant to actually call the society (I thought they were in Toronto but maybe not) and explain your situation over the phone, ie, the difficulty you are having to get to a doctor that knows something about scleroderma specifically and to see if they could actually get you in with someone else? They of all people should know how difficult this disease is to diagnose so maybe it would be worth a shot? I just know that I would try that in a heart beat if it were me, nothing to lose, everything to gain if it works? I have my specialist which is in London and the name of another that is also supposed to be very good in Toronto. Sorry, I don't know of anybody in Hamilton although it looks like you have that area covered anyway. Whatever you decide, I wish you good luck with it.


Ahh, I understand. I'll see where I can get with this other rheumatologist first, but I'll definitely keep the society in mind. I heard the specialist in London is excellent, but it's somewhat far for me.

Thanks again!