Not sure what to ask next

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OneTiredMama
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/21/2009 8:11 PM (GMT -7)   
Hi,

I am new here. about a year ago I was diagnosed with Unspecified Connective Tissue Disease. Since then I have been on and off Plaquinil (it started to damage my vision). My first blood tests came back with a slightly elevated ANA and elevated c-reactive protein. My most recent blood tests came back normal (done while still on the Planquinil) but I still have a long list of symptoms. My old rheum (we just moved) diagnosed me with UCTD and Fibromyalgia but said that the UCTD could change into Lupus or RA. My symptoms include joint pain, swollen connective tissue (aggrivated by heat and humidity), sensitivity to sunlight, sensitive gi system, slightly abnormal hormone levels, muscle spasms, carpel tunnel, and I produce scar tissue at a very fast rate.

I am looking for a new doc in the Boston area. Does anyone have any suggestions of where to start and what the best way is to approach a new doctor? I have always gotten strange reactions to my list of symptoms since my blood work isn't too far from normal.

Thanks!

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/22/2009 6:29 AM (GMT -7)   
Hi OneTiredMama,

First of all, we all get tired of the strange reactions to our list of symptoms. Or at least we did while we were in the process of being diagnosed.

I can't help you with doctors in Boston, but I believe that the best way to approach a new doctor is to go in prepared. When I was going in to see a new doctor I typed up a sheet that included:

1) a list of all of my doctors and their phone numbers

2) a list of all of my previous diagnoses

3. a list of all of my meds, and finally,

4. a list of every symptom, whether or not I thought it might be related to an AI disease.

And finally, most helpful to the doctor is a copy of your medical file.

A also go to every appointment with a written list of questions.


As doctors rush from patient to patient, they often get impatient listening to someone go on and on about their symptoms and concerns. That's why having it all typed up will make it easier for the doctor.

I'm sorry you're going through this because it can be such a frustrating process. Let us know when you find someone. In the meantime, please join us here. We all need support and we also welcome your input.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 8/22/2009 10:35 AM (GMT -7)   
I'm way down South Mississippi, so I wont be any help with the docs in the Boston area! I just wanted to wish you the very best. You got some great advice from Patty! Be vigilant! Stand up for your rights! Keep us posted! Judy

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 8/22/2009 3:58 PM (GMT -7)   
The Boston area has good rheumatologists and you should have no problem finding one.  Ask your doctor and then interview the rheumy to make sure he/she has experience treating AI diseases.  Check with www.lupus.org and www.mda.org.
 
I have MCTD and have lupus, scleroderma and polymyositis and have been through the mill.  Doctors who are part of a larger clinic or teaching hospital are better for complicated cases like yours.  Doctors in private practice can be fine but they are less likely to see these cases unless they focus on AI diseases.
 
UCTD can morph into MCTD or something different.  No one can really tell you for sure how it will develop.  The symptoms you describe are common with connective tissue diseases and I had most of them and more.  Plaquinel is often used for mild cases of lupus but more severe cases usually require prednisone and some other immuno suppressants and even IVIG.  There are a variety of treatments and most cases can be controlled but finding the right treatment can be frustrating.
 
 
Sorry I cannot give you a specific doctor recommendation but I live in Chicago.  However, my granddaughter has ulcerative colitis and was able to find pedicatric specialists in Boston who have successfully treated her. 
 
You might also post on www.myositis.org as there are many with UCTD or MCTD and posters from the Boston area.
 
Good luck and hope you get a diagnosis and effective treatment.
 
Bill
 
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


OneTiredMama
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/22/2009 5:25 PM (GMT -7)   
Thank you everyone for your replies. I have never made a list of all of my symptoms over the years. It actually sounds a bit scary but I am going to do it. Up until now I haven't pushed super hard for a solid diagnosis b/c I have had to focus my attention on my son's health. (He is doing better now.) I have also sort of been able to "push through" the symptoms that I do have. But I am tired of doing that. I will also check out the links. It is hard to find info on UCTDs so any new sites are great. I know Boston has some really good hospitals so I think I will start my search there.

Thanks again!
Libby
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