First and last rheumy appointment

[Sheltiemom]

Hi,

Today was the day that was supposed to be enlightening, as both my primary and cardiologist were highly suspicious for Sjogren's on clinical exam and symptom significance.  Suffice to say that by the end of the session rheumy, I was ready to ask for a refund of my co-pay.  According to her, this is "mild fibromyalgia" - in the absence of, mind you, of any muscle, joint, etc. pain or deep burning discomfort in any of those.  The skin redness over large areas and often on the cheeks is because "sometimes people get red."  Really?  (And does their skin burn like fire?  I didn't think so.)  My Rx was for aerobic exercise.  That's right, aerobic exercise.  She made no connection at all as to the following:  1.  The hypothyroidism;. 2.  The loss of tears and perspiration; 3.  The totally dried out, burning and super-sensitive skin (except to say it could be the low thyroid, but endocrine doc said it's only MILD); 4.  The areas of rash; 5.  The totally dry eyes that look like the Hound of the Baskervilles; 6.  The mouth burning. 7. The positive skin biopsy for small fiber neuropathy, which goes back to numer 3 above.  I've researched the credible fibromyalgias sites.  They say that fibromyalgia does not cause redness nowhere is mentioned a global dry-out of the entire body.  Called my primary to discuss the above.  He wants a second opinion, and so do I.  He said they are taught in medical school to treat the person, not the numbers.  He also said although the bloodwork tested negative for SjS, the QSART test and skin biopsies are indicative for it. 

[irish]

It never fails that we find a "bummer" once in a while. You would think they would all have the same education, but I think some of them either slept through class or had poor training during the clinical part of their training. It sure wears us out and takes a lot of our money. Thank goodness for your good doc that "gets it". Irish

[yankeeinthesouth]

I went to one for a second opinion after my SJS dx. Because my labs were negative he dx'd me as fibro. When I questioned what would be causing my severly dry eyes and mouth he did not have an answer. His response was we will treat as Fibro until something shows in the blood. Thanks for wasting my time and money.

[Patze]

Hi Sheltiemon,

Irish is so right, sometimes the doctor is not quite up to par for us, and you mentioned that your primary is willing for you to get another opinion (you're very lucky, as you have a keeper for a primary!).  A lot of us have had to switch doctors now and then to make sure that we get the best care for ourselves, and I can't even tell you how many I've changed over the years.

Can you get to a large medical facility or a teaching hospital by chance?  The reason I ask is that you'll often find the cutting edge doctors there, and that might be worth exploring; talk to your primary and see what he says about it.

Good luck with the next rheumy, and I'll keep my fingers crossed that that one will work out for you.

Take care of yourself -

Patze

[Epson]

Shletiemom,

This is all part of the process, get use to looking for second opinions, because that's all you got was an opinion.  Another doctor may see it in a whole different light.  At least your PCP thinks you should seek another opinion, that's helpful.

[Sheltiemom]

Now that I'm calmer about today's rheumy event, in answer particulary to Patze:

Responding to all who wrote back, and particularly Patze:  I live in the Greater Cleveland area, home of the vaunted Cleveland Clinic, and that's where I went today to see this rheumy.  And this is where my in depth work-up began about six weeks ago now on the recommendation of the two CC neurologists I saw as the first step in trying to find out what was wrong with me when it was strictly a skin issue and a couple of weeks before the really deep dryness began.

Definitely plan to seek a second opinion, but my insurance requires that it be with a Cleveland Clinic network physician.  Even if I have to pay the full fee to see another doc outside the network, am willing to do that as long as I can somehow first find out that the new one treats the person and doesn't hang his/her hat solely on the numbers, as my primary does.

You all take care, as well.  Tomorrow is another day and hopefully brighter for all.

Sheltiemom

[Sheltiemom]

Oops!

Meant that my primiary does NOT hang his hat solely on the numbers but looks at the whole picture.

[Scottietottie]

Hi 

OK - good primary. You already know. You need to find another rheumy!!!!

Take care - Scottie 

[Patze]

Hi Sheltiemom,

Ouch, I didn't realize that you went to a rheumy attached to the Cleveland Clinic (that's disappointing to hear).  I'm glad to hear that you'll be seeking another rheumy, but I'm sorry to hear that you'll have to pay for that out of your pockets, that hurts.  I pay for a physician outside of my network (I go to a doctor for my thyroid); she's expensive, but worth every penny.

Good luck with the search, and take care of yourself -

Patze

[Epson]

There is more then one rheumatologists at the Cleveland Clinic, several members see doctors at the Cleveland Clinic and are very happy with their rheumatologists, myself included.

[Sheltiemom]

Epson,

Well, glad to hear that some are happy with their Cleveland Clinic docs - but as I obviously have no way of knowing which ones they are, might wind up either play hit or miss down there, co-paying each time,  or try my luck outside network.  I'm just stating facts as they happened today, not whining.

Sheltiemom

[harrigan]

Sheltie I have had a great experience this week with a new rheumy.  I saw the previous one 5 times starting last March and he was always abrupt, rushed and largely dismissive.  My GP requested another rheumy at a different hospital, but I was given an appointment at the same hospital with a new Dr.  She was so lovely!

I know it is frustrating and for a while I felt a bit abandonned and like nobody was doing anything but I think it really is a case of seeking out someone confident enough to treat symptoms not numbers - and also able to analyse the results of the tests they order!  My ESR has been misread the last 3 times I saw the 1st Dr and he also missed the raised rhematoid factor.

When you get your new appointment I hope you get seen by someone who validates your feelings, listens properly and acts on what you are presenting with. Good luck XX Ailsa

[sewandsew]

Some rheumys only know the regular illnesses they see and are not familiar with Sjogrens at all.  I switched and this dr talks Sjogrens like we know it.  Find someone who understands.

[Bernice]

Yankee,

Now I don't know just how true this is, but I read somewhere that it is not good to use med. for Fibro. in the stead of med. used for SJS.

Might take me a while to find site but I will try!

[Sheltiemom]

Thanks to everyone for your support. Actually, somebody who answered this topic gave me the names of both her neuro and rheumy at the Cleveland Clinic downtown, and she's very pleased.  I might try my luck with her rheumy once the results of some more tests my neuro's ordered are known (CT w/contrast and bloodwork going off to the Mayo Clinic).

Y'all take care - only another six weeks until spring!  Yea!

Sheltiemom