Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Letter to Rheumatologist...thoughts?

I have a first appt with a Rheumatologist on 1/11/16. I've decided to write her a letter rather than attempting to verbalize my history...what do ya'all think?

Diagnosed with Grave’s disease in 1980, approx 18 months after giving birth to my son 3 mos premature.. Antithyroid meds…caused neutropenia after 3 months, meds stopped. Thyroid remained stable until approx 2006 when I was diagnosed with hypothyroid.

TMJ surgery due to deteriorating joints n 2006.

Neck pain/stiffness intermittent x years. Lumbar spine pain with radiculopathy progressively worsening. Sought answers in 2008.

Long history of intermittent plantar fascists bilateral feet, worse with pregnancy and impact exercise (I am no longer able to participate in any form of exercise involving impact).

I’ve had unexplained microscopic hematuria for several years. No history of UTI’s. KUB, ultrasound and cystoscpoy negative.

I’ve had “irritable bowel” for many years. Abd pain, loose stools. Colonoscopy negative. Spinal epidurals always caused those symptoms disappear for several weeks.

RA labs last year. All negative.

RTHR in 2013. Hip/pelvic and low back pain pain became severe enough to seek answers in 2008. MRI showed cervical and lumbar DDD. Hip X-rays negative until 2013. After RTHR the surgeon said my hip was much worse than he anticipated. Joint capsule had “huge amount of fluid filled with cartilaginous debris, femoral head completely bald.”

Severe progressive cervical and lumbar spine issues first diagnosed in 2008, now fusing. Current intermittent severe Lt hip and leg pain. Bilateral hand weakness with joint locking, Rt hand/wrist/arm weakness, tingling. Bilateral shoulder and arm pain.

Foot/heel and ankle pain/crepitus and stiffness in the morning. Pain and stiffness severe at times. Intermittent burning knee pain…crepitus, especially with stand-to-sit. Heel pain severe this past week worst on right.

Intermittent low grade fever of 99.0-99.5’

Dry eye and occasional blurry vision which I’ve always blamed on exophthalmos

Difficulty sleeping and worsening fatigue.

My father has had life long spinal issues and is now a functional quadriplegic, my younger sister is developing the same symptoms as I now have.

Dr. Ahmad, I just need you to know that I have a high pain tolerance, that I’m not a histrionic hypochondriac. I’ve been offered antidepressants etc. I’m fatigued and depressed, but it is situational, I am becoming physically disabled, my career is in jeopardy. When I had Grave’s disease I was so sick, but sent to psych and was not taken seriously for more than a year. I was on the verge of heart failure before I was finally diagnosed. I suspect an underlying autoimmune disorder. I need help.

Rightly or wrongly, a documet as highly "medicalized" as your letter, will not help except to raise the question "Is this peson a histrionic hypochondriac...... You much better off to describe a before in after in terms of what yoi could do ana what you couldn't do as specifiv symptoms arose. Most rheumys will be concerned with the "now" and documented family history. Ptevious medical records are less iortant than one would think ESPECIALLY if looking for fresh eyes. Please excuse typos Im on a tab today....

Be more efficient in your communitation.
She won't have time and the format is unhelpful

You are giving a report. Short and Sweet.I would divide your report this way:

Family History Age of Onset Condition now. Who what when current status.

YOUR onset date/current status doctors name (important)

Medications current. Medications Past 2 parts.Any allergies or reactions.

surgeries/date/outcome 1 line each. SPECIFIC DID IT HELP AND HOW.

Top 3 complaints NOW/effect on daily living. specific detailed ONLY THREE. list the others.

Always use numbers 0 is good 10 is worse.

On a side note since so many of your issues related to fatigue I would request a sleep study and a pain specialist referral.

Dont editorialize. "i was so sick" sent to psych not taken seriously" Turns MD's to OFF.

This should be no more than 1/2 page. simple direct and SPECIFIC.

good luck....=)

I think it depends on the rheumatologist. Do you have paperwork to fill out before your appointment?

My rheumy had standard paperwork, listing surgeries, meds, etc, but the last page was reserved for "please give a history going back to the time that you felt well without pain" or something like that. For me, that was 1986. I wrote something similar to what you have, just much more concise, stick to short facts, symptoms, dates of various diagnosis, etc. You don't need the last paragraph. Keep emotion and wordiness out of the document to make it easy to read.

Not all will do this, but my rheumy asked to see any images and reports, including bloodwork lab results that I had. I knew this well before the appointment. I contacted the place I had my MRIs done, and they gave me copies of my scans on DVD for a small fee. I brought copies of corresponding reports, and films of my x-rays. I always get a copy of any bloodwork results, but if you don't have that, you can get a copy from the doctors you've had bloodwork from.

As a note however, this was my third rheumatologist. The first two only requested bloodwork results and only looked at current symptoms and didn't do a very long history. Both of them gave me the incorrect diagnosis of fibromyalgia. I never thought to bring up my other symptoms, years of plantar fascitis and other tendon problems, to the first two, and they never asked. But I included those as part of my medical history for the third doctor.

Most doctors are not going to read a long document. I would use bullet points of just a couple of words each:

Symptoms:
-neck pain and stiffness
-lumbar pain
-plantar fasciitis
-fatigue
etc.....

Medical history:
-Graves disease 1980
-Hypothyroid 2006
-TMJ surgery 2006
Etc.....

Family history:
-father, spinal issues (give his specific diagnosis if possible)
-sister, similar symptoms to mine
etc.....

Your appeal to the doctor's emotions in the final paragraph is liable to backfire. Although you don't mean for it to sound whiny or hysterical, some doctors will take it that way. Leave it out and just stick to the facts.

Good luck with your appointment, and let us know how it goes.

Thanks all...I was giving a report (I'm a nurse...ha!) but you all are right...I'm just asking to be considered a psych case. Advise well taken...revising now. My current records are available to them electronically. I guess I'm just soooo frustrated that I overstated my case;)

IS this one better...I deleted the histrionic hypochondriac stuff... just the facts ma'am.

Diagnosed with Grave’s disease in 1980, Hashimotos in 2005

TMJ surgery due to deteriorating joints in 1996

Neck pain/stiffness intermittent x years. Lumbar spine pain with radiculopathy progressively worsening. Sought answers in 2008.

Long history of intermittent plantar fascists bilateral feet, worse with pregnancy and impact exercise (I am no longer able to participate in any form of exercise involving impact).

I’ve had unexplained microscopic hematuria for several years. No history of UTI’s. KUB, ultrasound and cystoscpoy negative.

I’ve had “irritable bowel” for many years. Abd pain, loose stools. Colonoscopy negative. Spinal epidurals always caused those symptoms disappear for several weeks.

RA labs last year. All negative.Hip/pelvic and low back pain pain became severe enough to seek answers in 2008. MRI showed cervical and lumbar DDD. Severe hip OA diagnosed 2013. s/p RTHR.

Severe progressive cervical and lumbar spine issues first diagnosed in 2008, now fusing.

Foot/heel and ankle pain/crepitus and stiffness in the morning. Pain and stiffness severe at times. Intermittent burning knee pain…crepitus, especially with stand-to-sit. Heel pain severe this past week worst on right.

Intermittent low grade fever of 99.0-99.5’

Dry eye and occasional blurry vision which I’ve always blamed on exophthalmos

Difficulty sleeping and worsening fatigue.

My father has had life long spinal issues and is now a functional quadriplegic, my younger sister is developing the same symptoms as I now have.

Tiona, just my two sense, but I would take out any "I" and "my" and not use them. Great first two lines, keep all the facts short like that. Most doctors will only glance at what you write, so the shorter the better, it will draw their eye to the most important information (for instance, you don't need to write that you no longer can do impact activity, bilateral plantar fasciitis is sufficient).

And take two copies. One for the doctor, one for yourself. That way if the doctor only glances at it, you will have it there to make sure you don't forget to tell the doctor everything you want to.