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(Still) looking for a new rheumatologist

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#1 mutsy67


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Posted 13 September 2008 - 12:26 AM

This has already been a five year process because my previous primary care physician didn't believe. New primary care physician last year who said go straight to rheumatologist. Waited four months for the appt. and she was wonderful. But then got the letter that she was leaving private practice for research.

She got the ball rolling and was going to be very aggressive. ANA was positive for scl-70 with a nucleoclear (sp?) pattern and elevated titer. She started me on Methotrexate immediately (with folic acid). And recommended Gastro consult. I thought things were headed in the right direction.

Now I've seen three different rheumatologist's trying to find a replacement. And they don't know squat and won't even admit to it! One said do more bloodwork and come back in six weeks and see the PA - huh? What's the PA going to do - this isn't routine follow-up just yet buddy!

Another said that the ANA is highly unpredictable and shouldn't even be used. But still wanted to put me on Plaquenil - what for since he thought I was fine?

And the third one said my blood work looks great (liver and kidney function) so "you're good" - I was sputtering around about why can't I move my fingers then? Why do I have Raynaud's episodes? Why do I have so much pain? What are the nodules all over my tendons? He said "that stuff is 'clinically insignificant' and you can just wait and come back when more symptoms present themselves."

I don't have the normal skin involvement but I think I may get it later down the road as I have lots of 'patches' of dry scaly skin that doesn't have feeling in it on touch - so something is going on.

Not a single one spoke about doing a capillary test either.

On my own I went to Cardio (EKG, Echo and stress test all fine) and Pulmonary (PFT's were abnormal and he's started me on some medications and inhalers). The Gastro (swallow test and endo) shows involvment as well and I've started on a medicine for that.

I live in Phoenix - there are dozens of doctors for me to choose from but it's a 3-4 month wait for each one. How in the world am I going to find a good one? I want to do 'speed doctor interviews' and get this all over with! We have a Sclero specialist here at Mayo Clinic but he isn't on my health plan. I'd consider paying out of pocket to get started and then use a less qualifed doctor from that point forward - but I can't even get a phone number so that I can speak to someone in his office - they just have one number and you have to schedule an appt. I guess I can still do that but if he doesn't believe in Sine Scleroderma then I'll be wasting my time AND a bunch of money!

Oh dear - I am so frustrated. I'm sorry - I just needed to vent.
Thanks for listening - I feel better already!
shari (Mutsy)
Shari (AKA Mutsy)

#2 jefa


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Posted 13 September 2008 - 04:40 AM

Hi, Shari

I know you must be frustrated, but to be honest, it sounds like you are getting reasonable treatment. It is hard to have to replace a doctor that you liked -- often no one seems to measure up.

I am not a doctor and cannot give you specific medical advice, but Plaquenil is a typical treatment and often works very well as a first line DMARD (disease modifying anti-rheumatic agent) which is far less toxic than methotrexate. It is often prescribed as a diagnostic tool in difficult to diagnose rheumatic diseases. Diagnostic in that if it works, there must be something there. If it doesn't, they can look elsewhere or move on to something stronger.

When you do not have many clinical symptoms, it is still important to keep on top of kidney and liver function. You are already following up on cardio, pulmonary and gastric issues. 3 to 4 months is not a long time to wait between appointments. I am sure you will eventually find a doctor who you feel comfortable with. Several people here have paid out of pocket for a scleroderma specialist -- only you can decide whether that is something you can afford.

I don't know what you mean by PA; not familiar with that abbreviation. I do suggest you try to relax a bit and realise that these things may not resolve themselves overnight. In the meantime, you may appreciate reading our page on Difficult Diagnosis.

Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Sheryl


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Posted 13 September 2008 - 05:14 AM

I think Shari is referring to PA as a Physician's Assitant. In the States we now have PA's to help take some of the load off the Doctor's. When you go in for just a cough or cold or simple problem you can see the Assistant and have a cheaper office visit charge than going to your regular doctor.
Strength and Warmth,

Sheryl Doom
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#4 razz


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Posted 13 September 2008 - 10:02 AM


I am sorry to hear your frustration in finding a new rheumatologist and then having to wait for the appointment date. I think the worse news to hear is a doctor you like, tell you he/she is leaving. Especially after searching for so long and feeling comfortable with a physician. I don't blame you and sympathize for you. But unfortunately it does take time to find a new doctor that meshes well with your ideas. The good thing is you live in a large city with access to medical facilities.

Please do vent if you feel the need. We are listening even if we don't have all the answers. Check back with the appointment desk and see if there are any available openings or cancellations. Where I go, the best time to check is on Mondays. Or, you can even ask them what day of the week they get their majority of cancellations. It also helps to ask around for good rheumatologist recommendations in your area. I've had good luck using this method. :)

Shari, I hope you are feeling better and don't let the search for a specialist and diagnosis get you down. Keep your positive attitude above all and foremost.


P.S. I never heard of a P.A. neither. That's a new one but thanks for the enlightenment!
Live well, Laugh often, Love much

#5 canon


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Posted 13 September 2008 - 12:27 PM

Hi shari,

We do hear you and sometimes don't know what to say, like razz said. It is very frustrating especially when things are unsettled and I think until there is a cure there will be alot of unsettled days. I take plaquenil and it is wonderful but I also take methotrexate injections. The plaquenil works wonders on the skin rashes and itching you will just need an eye exam for field vision prior to and every 6 months. It does help just alittle with arthritis.

During a recent work up they found multiple nodules on my lungs. After a couple of days I freaked out and called the pulmonologist office and wanted to be seen quicker than a month. I asked the office to please put me on the list should people cancel and there was an openning. I told the office I didn't like these things in my lungs. Well I had the appointment as originally scheduled. Nothing changed after the appointment either except add a chest cat scan every 6 months. It is 2 months after that appointment. I still have the nodules and still get freaked out when I think about it. The protocol is cats every 6 months to watch for size increases or changes.

I am sorry you are having a tough time.

A happy heart is good medicine.

#6 Peggy


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Posted 13 September 2008 - 01:42 PM

I hear you loud and clear! I know exactly what you are talking about. When my symptoms started as peripheral neuroapthy and I didn't know what that was I went online and found the peripheral neuroapathy association and poured my heart out and the runaround I was getting. Well I got a call from a lady in New York who put me in contact with the contact person of my state. He then called me and said you need to get in to see this particular doctor (neurologist) as his specialty is peripheral neuropathy. Well I called the clinic and they didn't have an opening for 6 months. I then asked for his assistant and I pleaded with her and she said she would talk to the doctor and see if he would work me in. Well low and behold they did! Now this worked 6 months prior to that when I thought all my problems, because this is what my general doctors were telling me, was that I had Celiac disease and because I wasn't adhereing close enough to the glutten free diet I was causing all of this. So I found out the leading specialist and he was at the Mayo Clinic. No openings and he only takes certain cases. I found out the name of his assistant and talked to her and she told me to mail my med records to her and she would talk to him. I got in to see him and low and behold I DIDN"T HAVE celiac at all! So now I was back to square one in trying to figure out what was going on.

It's because I got in front of this neurologist that he had me see his colleague and she immediately thought I had Sjogren's, Raynaud's, and Sclero that I was finally, after a year, able to find the answer to what was going on. Granted the outcome hasn't been good but at least now I know what I'm dealing with.

My advice is this.....................Don't give up!!!! You know your own body and you keep going to doctors until you get in front of one who will take you seriously and not think it's all in your head. Believe me, I know the feeling. You have to be your own advocate as no one will do it for you! Stay in the fight and if someone from this forum can give you some names of good sclero doctors in your area then fight to get in to see them.

We are hear for you to vent as we have all been there. This is a diseae that needs to be taken seriously and needs to be addressed.

I hope I've helped.

Warm hugs,


#7 Gidget


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Posted 14 September 2008 - 08:06 AM

I go to the Mayo clinic here in Jacksonville, FL and my experience has been very good. I see a rheumatologist, pulmonologist, dermatalogist, general practicioner. I have been very happy with the care they have provided and I suspect that all the Mayo clinics are very similar as they operate as one corporation ie. A doctor in Phoenix could pull up all my records from here in Florida and vise versa for Minnesota. The good news about the Mayo clinics is that they are on Salary -- meaning that they will take all the time they/you need instead of having to see 100 patients for the $20 co-pay.

My advice is to get into that sclero doctor and pay for the out of pocket consultation. Be sure to bring your test results, etc.. However, keep in mind, the Mayo Clinic tends to be a self contained organization and he may not know of a good local rheumatologist for you as Mayo doctors deal with Mayo doctors.

The other suggestion is to contact the Tucson Sclero meeting and see if they have any members in the Phoenix area that might be able to help you find a good rheumatologist.

Basically, there are only a handful of doctors that specialize in Sclero. As such, in most cases there is never one very convenient but I have found that the rheumatologist's that specialize in Lupus to be very up to date on the latest Sclero treatments. My rheumatologist at the Mayo Clinic in Florida is a Lupus expert. My rheumatologist in CT is a Lupus expert. Many of the sclero treatments are similar to the Lupus form of treatments ie. the cyclophosphamide for lungs; the immunosuppresents, etc.. When choosing from the list of rhuemys that ARE on your medical plan -- see which ones specilize in Lupus and I am sure that will put you on the right track.

Best of Luck. Gidget

#8 mutsy67


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Posted 15 September 2008 - 07:47 AM

Thank you everyone for your replies and comments.

Peggy - THANKS - I needed to hear that! My family said the same thing. They know how I used to be and it pains them to see me not get the care that I need. I will carry on for sure but sometimes I just need to hear it from others - so thanks!

Gidget - great advice - I may just see if Mayo can be a springboard or something. I have an amazing primary doctor and I know she'll be helpful but wants me to have a rheumatologist for guidance.

Our health plan gives our doctors incentives to not spend money on us so it is a battle. Doctors are VERY willing to write scripts and I know I should be thankful to have the meds but . . . that isn't going to be enough on its own.

thanks - I love this forum and the fellowship we can provide for each other.
Shari (AKA Mutsy)