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Update on 2nd rheumatologist appointment........


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#1 gemjar

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Posted 20 April 2008 - 12:21 AM

It didn't go well at all !!

How is one supposed to cope when the dr is narrow minded and arrogant :angry:

All my blood/urine tests were negative. The hand/feet xrays show do bone deterioration.

This is what he had to say about my swollen/bent fingers......."they have probably been like that your whole life and you've never noticed them before", about my swollen feet in the mornings......"has anyone else seen these swollen feet", about my tight face/smile in the mornings....."if it were sclero your smile would be like that all the time and not just the mornings", about the joint pain in my fingers....."and when does this joint pain occur", about my all over muscle aches and constant fatigue....."there is no such thing as Fibromyalgia, I don't even like using that term", and finally if there were anything wrong it would show up in my blood tests.

He also said if it were sclero I would not be able to flatten my hands out on a table, that my fingers would be permanently bent. He also said he wouldn't be able to pinch the skin on my fingers, to which I told him that by 5pm in the afternoon the swelling goes down and my fingers look wrinkly.(it was 5pm when I seen him) He said that wasn't possible in sclero !

He has referred me to have an MRI of my right hand and told me to ring him with the results(he is a 6hr drive away) not to bother making another appointment. I have already descided that even if the results showed anything, I will not go back to see him anyway.

I do not have any loss of tissue on the finger pads, my nails look fine and I still have hair on the top of my fingers, all of which are not normal in sclero he says.

What are your thoughts on what he has said and where do I go from here ? Should I get a second opinion or just let it go ? I feel that if I had been taken more seriously and given the respect that every patient is entitled, I'd be able to come away feeling confident that every base was covered. Un fortunately I don't feel that way at all.

Please give me your advice...i'm more confused than ever :)

Thanks,
Karen

#2 peanut

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Posted 20 April 2008 - 02:21 AM

Hey Karen,
I'm sorry your first doctor was so awful, to say the least. Yes, definitely go for a second opinion! Was this first doctor a sclero specialist? If not, you may want to seek a second opinion with a specialist.

We are our own best advocate so don't give up...

hugs,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 truman

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Posted 20 April 2008 - 02:55 AM

Karen:

When I was first told 17 years ago by another doctor, my DO at the time, an older man, went nuts when I told him of the results.

He told me in all his years as a doctor, he had never seen a case in his life and ordered me never to return to the diagnosing doctor. I was more than happy to hear that at the time, and never went back. Symptoms came and went for years and my DO eventually passed away.

Last year I was examined by a rheumatologist from England who was practicing in the US. She has many patients with the disease and in the first 5 minutes diagnosed me but wanted to confirm with blood test which proved positive. When I told my present general practitioner of the confirmed diagnosis, he didn't even bat an eye and recommended a rheumatologist that he felt would be better suited to my needs, who I now see. He felt the previous rheumatologist was not acting aggressively enough. Oddly enough I had told my present general practitioner of the diagnosis about 14 years ago. He said there was a test if I wanted to know, and I refused. He let it go and dropped the issue, but now says he recalls me saying it years ago. I still wonder why he wasn't aggressive in finding out back then?

I do like the new rheumatologist, but he has yet to do a blood test and has me on Paxil and Methotrexate. I've been with him for a year.

You have to be your own advocate, push on and see doctor after doctor until you are comfortable with the conditions, education and understanding of a doctor on such an illness. Where do you live, that it took 6 hours? Is there no one closer? Maybe your doctor or a hospital recommendation? I know I sent an email to one of the doctors on this forum and he recommended someone who was a specialist in the disease 30 minutes away from me. I haven't been there yet, but I know the option is there.

Keep us posted.
Tru

It is what it is...........

#4 gemjar

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Posted 20 April 2008 - 02:56 AM

Thanks Peanut.....i can't say for sure that he is a Sclero specialist, I was just told that being a rhuematologist he also is informed on sclero.

From what he said and the way he said it, I get the impression his only experiences have been with patients whom are severly affected.

I was going back through some old posts and noticed one that you had written. You said that your sclero was "inactive" for probably about 10yrs before it became active. You also mentioned that during this time your fingers were more swollen than tight. That is interesting !

I have also read on a FM website that the extremities can appear swollen, stiff and aching. Also very interesting.

Hope you are doing better now....did you find your wallet ?

Take care,
Karen:)

#5 peanut

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Posted 20 April 2008 - 04:15 AM

Hey Karen,
No wallet :( but I hope that a good person will mail it to me.

Yup, when I was a teen I remember waking up with fingers so puffy I couldn't move them and they hurt. I also had circulation issues - like both my arms falling asleep. I'd wake up and couldn't turn my alarm off cause my arms were like dead fish flappin' around.

My first doctor told me I had asthma. My gut didn't believe him and I'm glad I moved on. Find a sclero specialist. Hopefully they can help you.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 debonair susie

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Posted 20 April 2008 - 05:00 AM

It's too bad that you were treated this way... you are absolutley right... you deserve to be treated not only withrespect... but also sensitivity.
I really believe doctors such as this one... say what they do because of their ignorance about this disease. Whatever the reason, his PR sure has alot left to be desired <_< Each of us displays various symptoms, therefore this dr should have been taking notes... instead of being of the mindset he is.... too bad for him... he actually could have learned from YOU ;)

peanut and tru had good information for you... don't give up and please know that there is a dr out there who will be GREAT... there are more good ones... than bad ones :D

Special Hugs for you,
Susie
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#7 bookworm

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Posted 20 April 2008 - 07:48 AM

Hi, Karen!
I'd sure find a sclero specialist, and when you get a correct diagnosis, I'd have the results sent to the doctor you just saw!

Mary in Texas

#8 smac0719

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Posted 20 April 2008 - 08:42 AM

Wow! The attitude is reminiscent of my visit with a Sclero "specialist". I too had swelling, and stiffness, but no permanent bending. My skin can be pinched on my fingers and hands, but not on my arms between my wrists and elbows (or my feet on some days). My blood work also came back "negative" for all rheumatologist related illnesses. We just are not typical cases, but we are affected nonetheless.

Please continue to seek a specialist who is more astute to the varying degrees of this disease. I saw 4 Rhuemo's before I found one that was willing to LISTEN and hear me out, advise what they knew about the disease and was willing to research what they didn't. It may take some time, tears and trials, but it's worth it in the end.

You'll be in my thoughts!
I may have Scleroderma, but Scleroderma doesn't have me!

#9 mando621

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Posted 20 April 2008 - 11:50 AM

This Doctor sounds just like the person I saw who said I couldn't possibly have anything wrong since my blood work all came back within normal ranges (at the time). Anti-Nuclear (ANA) came back positive, but with further testing was within normal.

I have been having finger swelling for at least 4 years now. I don't have hair on the last part of my fingers closest to the nails now, they are shiny there. When they aren't swollen, they get wrinkled and leathery looking. They aren't too stiff durning the day, only in the morning.

I have terribly dry eyes and burning mouth, and some trouble swallowing. All these symptoms I was told are nothing serious, just inconvenient.

Are you in Texas? The doctor that was so rude and arrogant with me moved to Texas.

I'm seeing different doctors to find out about specific issues. I'll go to the rheumatologist if something shows up after my upper GI. I don't see any point going to the rheumatologist that is currently in my HMO since he already diagnosed me with fibromyalgia. My dentist says this is just a name for "I really don't know what is wrong".

Best wishes.

Mando.

#10 Snowbird

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Posted 20 April 2008 - 12:10 PM

Hi Karen

Wow, is right!! Your second sentence says it all!! I personally would forget all about him.

If it were me, I would definitely find another Doctor...one that you know for sure is a Sclero specialist. Don't give up, just keep moving on until you find one that you are comfortable with and one that is interested enough to take the time to discuss your health with you.

Maybe someone on this site can help you with a list of doctors in/or near your area, if you don't have that already??
Sending good wishes your way!

#11 Helen

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Posted 20 April 2008 - 05:35 PM

Hi Karen
Sorry your appt. didn't go well. I go to Dr Klestov because he comes to Rocky once a month and I don't have to travel to Brisbane. I haven't had any trouble with him, probably because I was easy to diagnose. He is sending me to the Royal Brisbane for heart and lung tests as they have some kind of Sclero clinic there now. Maybe you should ask your doctor about that.
I was talking to MintMarigold (who is also on this forum) in the chat room a couple of weeks ago. She lives in Brisbane and said there is also another hospital in Brisbane dealing with Sclero. I can't remember which one it was though. Maybe you could get in touch with her. She goes to a different rheumatologist to me but I can't remember his name either.... As for your fingers, I still have some hairs on the back of them and I haven't lost any tissue from my finger pads.
Hope I have been some help.

Take Care
Helen

#12 Sweet

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Posted 21 April 2008 - 08:59 AM

Oh Karen, I am so sorry. My advice? Get a new doctor. He/she didn't seem to have any compassion or respect for you at all. I'm really sorry.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#13 gemjar

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Posted 21 April 2008 - 11:59 AM

Thanks everyone for your warm support and advice :D

Tru and Mando....i am in Australia and like Helen, live 6-7 hrs away from a major city. Tru, what does Paxil and Methotexate do for you ? Not getting an early diagnosis is something that bothers me (if it's sclero) as from what I have read here it is essential to the progression of this disease.

Helen.....i may just ask to be referred to Dr Klestov yet ! I didn't want to wait so long to see him, hense my appointment in Brisbane. I'm starting to realise that waiting can be a big part of this journey. I have to schedule an app. for an MRI of my right hand. Has anyone had this done ?

Oh by the way, thought I'd share this Dr's analogy on why I wake up stiff and sore. He asked me if I'd ever owned a wind up watch (you can see where this is leading) then asked me what time of the day I wound it up, to which I replied the mornings. He then asked me to describe what winding the watch felt like...i said tight and then he said "there you go, after a period of rest one would expect to wake up feeling tight, just like the watch" !!!!! Can you believe he even said that....i was so shocked, then angry I wanted to throw something at him :blink:

Oh well, one day I might laugh about it ;)

Thanks again,
Hugs,
Karen