Author Topic: convincing a doc. to treat me...  (Read 3658 times)

whatsup

  • Guest
convincing a doc. to treat me...
« on: November 14, 2008, 10:31:42 PM »
Hi

I have seen a Rhemy and have negative bloodwork for SS although I have many symtoms including dry eye (confrimed by schimmer test); dryish mouth (consume water constantly); terrible fatigue and achiness; and general dry skin with cracking heels, painful feet, and dry lips which I apply balm for everything half hour or so.  I also have Raynuads and have had my fingers swell up on two occassions. 

The rheumy said I simply have dry eye syndrome.  I asked for a lip biopsy but he said it wasn't necessary.  I asked if I could give Planquil a trail to see if it helped and he said I didn't have SS so his answer was no.  I am now seeing a doc. who is investigating my fatigue issues.  How do I convince a doctor that many patients with SS have negative bloodwork?  Is there some matieral I could give him to legetimise this fact?  My rheumy didn't believe it!  I am trying to locate a Rheumy in Brisbane, Australia who might treat me based on symptoms but I don't know how to find one.  I've written on this board requesting any info. previously.  I'm soooooooooo frustrated, having been ill for 15 years and with two small kids to care for.  Any advice?

Thanks

ktfabian

  • Hero Member
  • *****
  • Posts: 881
Re: convincing a doc. to treat me...
« Reply #1 on: November 14, 2008, 11:20:43 PM »
Oh my heart goes out to you!  How sad that we feel we must bring the materials to our doctors that confirm a diagnosis when all he has to do is look at how bad you feel!

I wish I could explain why this happens, except to say that there are ignorant doctors out there.  I hope the next doctor you see will be a truily open-minded, well informed doctor who listens to all that you are telling her and realizes it can take some time for all the keys to fall in place on this diseas, including the bloodwork, but that treatment at the start can really help.

All my best to you, Tracy
________________________________________________
55yo Sjogren's, Fibro, Selective IgM Def., back pain - fused L3/4-L5/S1,  Costochondritis, Achilles tendon tear,  cluster headaches
Plaq, Medrol, Vit D, Arava, Rituxan, Mobic, Evoxac, Tumeric 1000mg daily, Cymbalta, Fiorcet, Klonopin, Soma, pain med.

Marmotte

  • Guest
Re: convincing a doc. to treat me...
« Reply #2 on: November 14, 2008, 11:22:26 PM »
I think most of us have found that doctors don't catch on to this right away, although 15 years is a long time! I have gone through a lot of doctors who dismissed my symptoms as being stress, in my head, negligible, etc. If it were me, I'd look for another doctor, if at all possible. I haven't found most doctors real open to being "educated" by their patients. LOL.

Good luck, and blessings to you with your children. I hope someone from your area can recommed a doctor more in tune with SjS.

Marmotte

DesignerS

  • Sr. Member
  • ****
  • Posts: 431
Re: convincing a doc. to treat me...
« Reply #3 on: November 15, 2008, 06:23:52 AM »
I agree, please find another doctor.  It is a pain, but necessary.  When I went into my GP about my mouth and burning, dry, and fissured tongue, he said " I have never put this on anyone's death certificate."   ::)   Meaning, this is just not important.  Hang in there because it is worth it to find a wonderful and helpful dr.  Take care.

Designer

Billydude

  • Guest
Re: convincing a doc. to treat me...
« Reply #4 on: November 15, 2008, 11:12:22 AM »
Very simple.  You must find another doctor.   Perhaps someone from this site who goes to one in Brisbane can recommend one.

Sjenny

  • Guest
Re: convincing a doc. to treat me...
« Reply #5 on: November 15, 2008, 12:41:18 PM »
Whatsup:

This page from the Sjogren's Foundation lists the % of patients with positive bloodwork.  See http://www.sjogrens.org/syndrome/diagnosis.html

Cracked heels, dry skin, even dry eye can be indicative of Hashimoto's syndrome as well as Sjogren's - Dr. Gene Watson told me that because my primary autoimmune disorder was Hashi's - Sjogren's may never show up in my bloodwork.

If you haven't already been tested - ask specifically for the anti-thyroid antibody test - it is not included in the standard panel of thyroid tests, at least not in the USA.  If it is positive, you need thyroid hormone replacement and I firmly believe Armour thyroid is highly superior to Synthroid - see www.stopthethyroidmadness.com

I hope you find a doctor that will help you soon.
Regards,
Sue

Collie

  • Guest
Re: convincing a doc. to treat me...
« Reply #6 on: November 15, 2008, 01:24:57 PM »
I know exactly how you feel, the rheumy told me the exact same thing he told you, but I had one difference; all my doc thought I had some auto immune disease, all except the rheumy, and he convinced the other doc I was playing sick. Finely I came out and ask my, why is it, all the meds I take are for the symptoms for SS, yet I don't have the disease, tell right out, I do not have Zero neg sjogrens. I was put on methotrexate, and I showed improvement after only week. my doc's response was, "Well I guess there are other ways to see if you have an auto immune disease other than just the blood work.

I would keep searching and do not accept a doc's answer if you do not agree with it, you pay them to help you not the other way around. Doc's do not know every thing, that is why it s said, "Doctor's are practicing medicine"; they need to practice until they get it right.

Collie

Patze

  • Hero Member
  • *****
  • Posts: 6705
Re: convincing a doc. to treat me...
« Reply #7 on: November 15, 2008, 02:04:48 PM »
Hi Collie,

True words my friend!  If I would have done that when my thyroid started acting up, I could have saved almost a year of suffering. >:(  You're right, they are practicing medicine, I just wished they would have it down after 20 years of "practicing".  ;)  Oh well, what are you going to do except find another doctor?


Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

pudmott

  • Guest
Re: convincing a doc. to treat me...
« Reply #8 on: November 15, 2008, 05:07:40 PM »
Hi Whatsup,

Sorry to hear you are havin such a hard time getting treated. It must be so frustrating for you. I have put a couple of links below for you to try. I googled Lupus Queensland but the link is broken so i have included the link for Lupus NSW and also a link for the Auto Immune resource and research centre at the hospital near me in Newcastle NSW. You mau be able to get n contact with them and either find some support closer to you or get some info to present to your rheumy that might help.

www.lupusnsw.org.au 
this is lupus NSW

http://www.haps.nsw.gov.au/Patients/Scleroderma__Lupus_Resources/Autoimmune_Resource__Research_Centre.aspx
this is the Autoimmune resource and research centre.

I am also seronegative but have a good immunologist who is treating me on symptoms and other tests. I had the schirmer's and also a salivary scintigraphy scan which showed little spontaneous salvary production. You might want to ask for one of those.
While the diagnostic critera for Sjogren's currently requires either a positive lip biopsy or positive blood work, there is a line of thinking coming through that reflects the amount of us that dont show these things that have sjogren's.

Try these links and see if any of them help you. If not let me know and i will see what i can do. Good luck with it.

Pud