Author Topic: " I am amazed how many of you go to doctors all the time." Quote from CCCourt  (Read 3916 times)


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Dearest Angels,

This is a comment we have all made, about ourselves.  And one we have heard from others, so often.

ALL THOSE DOCTORS!  Why do we have all those doctors?

Well, Sjogren's can and does affect every part of our body.

The underlying culprit is inflammation, and inflammation damages (and can destroy) any part of our body.

SO, we need a

*Good Dentist, for the oral problems that go with lack of saliva.
*Good Ophthalmologist for the eye problem that go with lack of tears.
*Good Neurologist for the nerve damage.
*Good Rheumatologist for the osteoarthritis, autoimmune conditions (they like friends), osteoporosis.
*Good Immunologist to deal with other Immune Mediated conditions.
Good Pulmonologist because Sjogren's goes after the lungs big time.
*Good Orthopedist (osteoarthritis and related surgeries)
*Good Cardiologist (I have coronary artery disease which is caused by inflammation)
*Good Otolaryngologist, sinus, ear problems (I have Meniere's and hearing loss)
*Good Dermatologist (eczema, psoriasis etc.)
*Good Gastroenterologist because Sjogren's affects our gastrointestinal system in major ways.
*Good Urologist to deal with Interstitial Cystitis
*Good Gynecologist, those with Sjogren's have more complicated pregnancies and cycle issues.
Good Nephrologist when the kidneys are affected.
*Good Podiatrist (I have had four separate problems with my feet NOT counting Raynaud's.)
*Good Family Care/Internist for 'other' issues
*Good Psychologist to deal with all of the issues resulting from seeing the above list!

I have put an asterisk next to each specialist I currently have or have had in the past.

Since the term GOOD is crucial, we may have to 'kiss a lot of frogs' to find a GOOD FROG.

Just the complexity of making the appointments, amassing the paper work, finding the places, parking, walking, waiting in the smaller and smaller rooms in a maze of rooms that you couldn't escape from if you had to in an emergency, the poking, weighing, repeating, prodding, paper gowns, EEK!

Oh, and having 5 mammograms in one year due to suspicions. 

And there are horrors, cancer, terrible infections, accidents both major and minor.  My Daughter-in-law had a suddenly detached retina three months ago.....  This stuff just happens along with our autoimmune/immune deficiency Immune Mediated chronic conditions.

So, YES, we see a lot of doctors.  do we like it?  HAH.   I could be living in luxury right now just on my co payments alone over the years.

End of rant.  Hugs,  Elaine

« Last Edit: June 06, 2014, 08:36:03 AM by Carolina »
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-


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This scares me. If it wasn't for my back issues, I would have never went to the doctor for my Sjogren's symptoms. I guess mine is a mild version or this is what it's going to be for me in the future..? The only SS symptoms I have so far (and have had since puberty) is dry skin, mouth and eyes, and fatigue... But it doesn't even bother me. I had learned how to deal with it before I was diagnosed. I really hope my SS will progress slowly or stay the same (is that possible?).
« Last Edit: June 06, 2014, 06:41:59 AM by Pinkfish »


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My comment was made as a response to SjoGirl saying she was thru with going to drs.   She was saying she felt it was a waste of time and money.  She would wait until she was in crisis.

I went on to say for those of you who go to so many many times...until those separate doctors get ALL the info from one another, the individual visits result in fruitless results.  (as in SjoGirl's frustration was stating.)

btw:  I did state so many of you were so much more involved than I am.  (not to mention for much longer.) 

We did have a fun thread not long ago regarding an episode of Nurse Jackie who immediately picks up the fact an ER patient has an autoimmune disease.  The plot took Jackie on a course to get three of the patient's doctors together by telling each  his/her mother was in the ER.  Once they got there...Jackie tells them to discuss the histories of their patient.  It was wonderful.  Ah but that Edie Falco could be in each of our hospitals and clinics!!   :)

Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene


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I went to doctors a lot more pre-diagnosis...trying to find out what the heck was wrong with me that was causing my bone crushing fatigue and weakness and eventually onset of other symptoms. Thankfully, at the end of that process, I was able to fire my neuro and my oncologist and no see my other doctors as much.

Now that I know it's "only" good ole Sjogren's, I see my Rheumy every 3 months, my gastro every 6 months, my endo every 6 months, my opthamologist once a year, my dentist every 6 months, and my gyno once a year...and I would suppose a few more often if problems arise.  Due to Barrett's, a thyroid nodule, and a liver tumor, I do have to have f/u MRI's and endoscopies as well. I don't think that's a lot for a person with a a few chronic autoimmune diseases.

And, yes, pinkfish, even though it is a progressive disease, it is possible that your sjogren's can progress slowly or even stay the same.

Sjogren's; Hashimoto's Thyroiditis; Raynaud's Syndrome; GERD; Barrett's Esophagus; Gilbert's Syndrome; Tremors; SFN; Osteoporosis; Osteoarthritis; Lyme 2003 & Lyme/Babesiosis 2010; OB; Plaquenil; Evoxac; Restasis; Prevacid; Synthroid; Prozac;Estrace Cream; Vitamin D.


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I'm sorry if this is too off-topic, but I keep hearing people say they get cut from the doctor's list because they don't make an appointment in time. How does this work? And is this for all rheumies? After my next appointment, I don't feel like going again until something new pops up. But I don't want to have to go to a new doctor every time I need a doctor?


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I'm sorry if this is too off-topic, but I keep hearing people say they get cut from the doctor's list because they don't make an appointment in time. How does this work? And is this for all rheumies? After my next appointment, I don't feel like going again until something new pops up. But I don't want to have to go to a new doctor every time I need a doctor?

I have never heard of that.  I make my f/u appt after each visit but even if I didn't schedule an appointment as suggested by my doctors, not one of them would cut me off their list.  That's crazy.

Sjogren's; Hashimoto's Thyroiditis; Raynaud's Syndrome; GERD; Barrett's Esophagus; Gilbert's Syndrome; Tremors; SFN; Osteoporosis; Osteoarthritis; Lyme 2003 & Lyme/Babesiosis 2010; OB; Plaquenil; Evoxac; Restasis; Prevacid; Synthroid; Prozac;Estrace Cream; Vitamin D.


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Hi Elaine,

Your list of specialists looks crazy, but it is exactly where I am with autoimmune & mitochondrial conditions now!!

It is such a help to read that others have similar lives filled with apts., frustrating symptoms, and both good & bad docs!

Thanks for that post:)
Sjogrens, Stills disease, Acromegaly, Interstitial cystitis

Plaquenil, Prednisone, Octreotide injectable, Crestor, Xanax


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I've never heard of that, Pinkfish. Doesn't your rheumy tell you when he/she wants you to come back? I've never left my rheum's office without knowing when my next appointment is. And then if anything happens before my next appointment I can just call.

Like a pp I saw many more doctors before my dx. Now as a matter of routine I see my primary 1x per year unless I'm sick, my rheum every 4 mos, a dentist 2x per year just like always (my teeth are good and I've never had a cavity despite my dry mouth) and my eye Dr 1x per year unless something comes up with my eyes and I need to see him sooner.

Now and then issues will crop up and I'll need to see a dermotologist or a gastro but it hasn't become a routine yet.
37/F Dx sjs with lupus overlap, raynauds
Plaquenil,prednisone, gabapentin, cymbalta, zanaflex, evoxac, lidoderm patch, restasis


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Oh cccourt I didn't think you were critical!  I just picked up on that phrase since it is so much a part of my life.  And the coordination of information should happen so much more, as you pointed out.  That's why I have all my doctors in the Duke System.  But honestly, most of what I have is just managed at the symptom level.  I do take serious meds for my heart condition, and for my Immune deficiency...but they aren't FIXING the problem, or stopping it in any major way.

Pinkfish:  Most people with Sjogren's go along for years and years, perhaps forever, without other problems.  They tend NOT to be posting here, however.  Please don't see what most of us experience as typical of Sjogren's.  We are NOT typical of anything.

I am also 72, so keep in mind that whatever I have, I've had a long time (eczema and bronchial stuff since infancy, for example).   And it is possible that one of my conditions is the result of medications I've taken for other things (just possible, not known).   Antibiotics for UTIs are known to possibly cause Peripheral Neuropathy and I developed profound PN after taking Macrobid for three years.

And there are those of us who have had auto accidents, and conditions that aren't related to immune system malfunction, at least that we can clearly define (epilepsy, cancer, etc). 

Susan, I glad AND sorry that you can identify.  I honestly don't know a thing about mitochondrial conditions...and I imagine you have learned so much you wish you didn't need to know. 

Maria (wildforwater) you are fortunate to have gotten a sense of balance now in your life;, and it does involve  12 doctors' visits a year, minimum (I counted)...and probably separate appointments for the tests.  It can really add up quickly.

I'm really not complaining about this, but just know that 1) I'm fortunate to be able to go to doctors because I have good insurance (Medicare) 2) I'm fortunate to have found good doctors  3) I'm fortunate to have a unifying diagnosis (Immune Deficiency) that validates the existence of all the other conditions that I've never tested positive for!

Hugs, Elaine
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-


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I see as few as possible. None of them do much to help me anyway.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease


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Your primary doctor is your chief coordinator.  Most often the primary doctor will refer you to a specialist and if you are not sure whether you need to see that specialist on a regular basis, then your primary doctor needs to advise and follow through for you based on conversation and reports.  And then your primary doctor should get copies of all reports from every other doctor or specialist you see and also have a very strict up to date  record of all the meds you are taking and advise of any meds that might conflict.

Sounds so easy doesn't it!  I personally try to stay in touch with someone in the doctor's office who can help coordinate all that because so many doctors are way too busy to keep track.

I had a young female very smart doctor for a while but she kept referring me to specialists - enough to make me dizzy and permanently penniless at the same time!  Now I have an older male doctor and it is quite nice to go through the elementary process of "open your mouth and say ahhhhhhhh!  - he could tell quite a lot from that action and at least he was alerted when I said I had a question but added "but I hope the question will not cause another medical code charge or referral to a specialist" - laugh out loud - it takes a little while to get the kind of attention you need especially as most of us have more than one thing going on that could become potentially serious overnight.

Talking to your primary if any other doctor won't keep you on the books because you don't want to be constantly seeing them, is for the birds.  The last doctor I saw said "I will see you for followup in six months ------   if that is ok with you?"  That's the way it should be!


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Oh yes, doctors doctors doctors doctors. A fulltime job managing appts, meds, tests, preps for tests etc.

My list past 29 years-

*GOOD General Surgeon
*GOOD Orthopedic Surgeon
*GOOD foot and ankle Orthopedists
*GOOD plastic surgeon
*GOOD Neurologist
*GOOD Neurosurgeon (consult only)
*GOOD cardiologist
*GOOD pulmonologist
*GOOD Physiotherapists
*GOOD internal medicine doctor (PCP, or good family med doc than can refer to correct specialities)
*GOOD ENT Surgeon
*GOOD Allergist
*GOOD rheumatologist
*GOOD audiologist
*GOOD Dentist
*GOOD oral surgeon
*GOOD opthalmologist
*GOOD hematologist (consult only)
*Infectious disease specialist (decided my dry nasal crusties were MRSA without culturing - turns out was SJS SICCA)
*GOOD GYN (almost forgot him)
*GOOD vascular doctor

I feel like I left one or two out somewhere
Oh, I did forget my favorite

*GOOD Endocrinologist

Oh, I forgot ANOTHER one

*GOOD Gastroenterologist
*GOOD Pain Management doctor
*GOOD Respiratory Therapist
*GOOD neuropsychologist (TBI rehab)

Now when a doctor/specialist has whatever problem stabilized and says "See you in six months" MUSIC to my ears. Even better when it's "What about instead of a followup, you call if you need to be seen) that is classical music to my ears!!

EDIT: Most of my medical issues are secondary to trauma initially, and I am not seeing this many doctors at this time.

Current list:

PCP, annually and for acute situations
Endocrinologist, every 3 months
Neurologist, every three months roughly
Rheumatologist, every six months
Allergist, every three months at present
ENT, 4-5 months
GYN, every other year
Orthopedist, PRN (I have three of those, one for spine, one for knees and one for footies & ankles)
Vascular - every 3 months at present
Gatroenterologist - ev 4 months at present
Dentist - every 6 months
Opthalmologist - ev 6 months
Pain Management Doc (PRN this one, he does my trigger point injections)

I think that is all at present.

**Oh and on the thread title? My impression was that Elaine was only giving credit for the quote and nothing more than that.

It is overwhelming to have so many doctors. My medical situation is stabilizing once again. THANKFULLY!!

« Last Edit: June 06, 2014, 03:37:26 PM by litliwlowa »
SJS-Primary; Hashi's, Post surgical hypothyroidism, Hypoparathyroidism, Spondylolithesis, L&C Facet Arthropathy, Fibro, gluten intolerance, TBI, Radiculopathies, Neuralgias, Osteopenia, GERD, Asthma, Allergies. Sphincter Dyssynergia. OSA, Fasciitis, Cervical Spondylosis, Cancer, etc etc etc


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I don't go to the doctor unless I have to. Unfortunately, I have Sjogrens, Myasthenia gravis, Hashimomtos, Bullous Pemphigoid and severely low t-cells. I havee lots of infections over the years and have had to take many, many, many antibiotics---some really severe infections at times also.

I am on IVIG 80 grams(very large dose) IV gamma globulin---once a month and it takes 6 hours. Have been doing this for close to 8 years. I am also on Prednisone, Plaquenil and Cellcept which is an immune suppress at. I have had symptoms since I was around 20 years of age and was ill a whole lot and docs all thought I was a hypochondriac---I wish the deceased docs could see me now!!!!

I was not diagnosed until I was 50 with the Sjogrens and by then had lost most of my teeth and lots of other health issues---lost hearing in right ear also. The rest of the diagnosis came when I was 63. I try to keep my doctors appts to a minimum, but then I will get sick. Also, there is the mammogram, etc and other testing for my thyroid, etc that have to be done.

The first years I felt lousy a whole lot but I would just self medicate much of the time and nap as much as I could. I ow refuse any invasive procedure and any scan, etc as I have been scanned to death. The docs all think that a cat scan is the answer to all our prayers and diagnosis. Not true!! The other thing that people are not always aware of is that if you refuse too many or at least certain medical intervention you can find yourself labeled as noncompliant and sometimes the insurance companies will refuse to pay for some procedures if they feel that you made yourself worse by refusing medical care earlier. Life ain't fair, but that is life thee days. Irish


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I don't like going to the doctors, but so far I have had to see the following.

Nurse Practitioner
Eye Doctor
Oral Surgeon
Ear Nose Throat Doctor
Psychologist/ and Psychiatrist
Tests, tests, and more tests.  I am thankful though that I have been able to see them when I needed too.

susanep :)
« Last Edit: June 07, 2014, 01:13:43 AM by susanep »
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi