Patient History, Autoimmune?
S. DOB: 3/30/1982
First thank you all of you for all of your help, both on the Mercy side, and the Hopkins side. If Rheumatology joins the Hopkins team on Tuesday you guys will be 3 for 3!
- Dr. Jason Rosenberg, Director of the Headache Center
- Dr. Agrawal, Neurotologist
- Dr. Ratain, Consultative Rheumatology (Can’t wait to meet you!)
- Dr. Kevin Audlin, Co-Director of the Endometriosis Center
- Dr. Michael Martin, the best PCP EVER!, Overlea Personal Physicians
- Dr. Hagan, GI, Colorectal, who kept me alive pre-surgery!
Thanks to my ever amazing boyfriend Mike, and help from some superpowered autoimmune patients online (http://luckfupus.com1 and others) I have this EXTREMELY long history that I think covers MOST of what has been happening. I did my best to keep it objective, and as brief as possible. Also, I tried to keep the headings clear with headers and such to make this a bit easier.
The infamous labwork!
These are the strange tests results. The first set was from Dr. Naseri.
(Oh and thermometer readings are from Exergen too! Best $30 I’ve spent, based on the reviews and instructions by an ER Nurse)
The second are from Dr. Martin
The abbreviated version: I had surgery on 3/16 my colon had completely stopped working. My surgeon found frozen pelvis (severe adhesions throughout my abdomen), he said cause had to be inflammatory or autoimmune.
I had a temp of 99.5 being wheeled into surgery. Within a week after surgery my condition deteriorated drastically. Colon not working (no motility), regurgitating stomach acid, severe pain after eating, return of hip and low back pain, malar rash, severe abdominal inflammation that is not accounted for by where I was in recovery, weird scaly round patch on my shoulder, Severe? My surgeon had me take a full third week off since he felt this mystery autoimmune was compromising my recovery and the source of scarring was likely to return.
My PCP agreed with my surgeon. I took my Dexamethasone starting 4/7 (days: 18,18,12,12,6,6,) and all symptoms resolved. However, after stupidly being in the sun on Friday all symptoms relapsed on Saturday.
My PCP and surgeon are very concerned, say I am vulnerable for the scar tissue reforming. However, Rheumatology got my extensive labwork back and said it is normal and said it is not their problem, when rash was mentioned I was told to move up my follow-up.
To date all labwork is negative or inconclusive. PDFs have been attached in Lucy/MyChartCentral/Epic
Paths that have ended in Rheumatology referral due to concern of systemic autoimmune or inflammatory process:
- Diagnosis of Definite Meniere’s Disease, symptoms began on 4/30/14. Does not improve with typical Meniere’s treatment. Began after severe allergies and medical mucking with hormones. Both are believed to be major factors in why I developed the condition. Assessed by Johns Hopkins Neurotology department (Dr. Agrawal) in November 2015, extensive testing and evaluation was completed. My Meniere’s Disease was diagnosed as autoimmune in nature. Based on history of migraine with aura only resolving with steroids stated concern that I had an undiagnosed systemic autoimmune disease. I was referred by to a specialty Rheumatology clinic with HopkinsI was accepted, and scheduled for late February (did not make it due to the surgery!)
- Current concerns shared by PCP, GI, and Endometriosis Surgeon that there is a systemic autoimmune or inflammatory disease. The more history that is given, the further into the symptom pattern, and response to steroids is causing deepening concern by my doctors.
Health Timeline (Loose Speak)
Ages 13-23: Developed Migraines with occasional complex aura, and Endometriosis at age 13. A host of random infections, hide go seek labs including anemia, thyroid, and rheumatoid factor. All would go be abnormal for a bit, docs freak out, but by the time I get into several appointments with a specialist all is normal. I also developed enlarged thyroid. On and off there were scares about Epilepsy due to my occasional heavy duty neurological migraine auras. I didn’t really pay much attention to any of it, and only went to the doctor when I was really sick. Usually because my mother made me go.
Ages 30-32 (3/12-3/14): My health deteriorates, I am diagnosed with stage III Endometriosis and colon adhesions on 10/2/12 it was excised by an Endometriosis specialist and has not returned other than two very small spots, that were also excised. However, my symptoms don’t improve so I am placed on high dose combined birth control, then Lupron (medically induced menopause), then birth control again (to mimic pregnancy). I am diagnosed with Adenomyosis and have a subtotal hysterectomy.
Problem solved, I am all better. However, I could not tolerate progestin only therapy, it caused me to develop freak environmental allergies. This is a bizarre thing that happens in my family, my mom is allergic to almost everything due to long term high doses of combined and progestin only birth control for her Endometriosis. I give the progestins one more shot in January 2014.
Age 33, April 2014: I develop severe seasonal and environmental allergies along with severe fatigue. The first few weeks based on all my symptoms we thought it was an awful cold. It takes prescription antihistamines, steroid nasal spray, and antihistamine eye drops to bring it sorta of under control. I begin to develop severe ear fullness, dizziness, and a worsening of my tinnitus. I am put on a brief round of Prednisone for presumed Eustachian tube dysfunction. I briefly improve.
April 30, 2014: I have my first Meniere’s vertigo attack, anyone with Meniere’s can tell you that you never forget the date or the moment! This is my last day of work for over 2 months, I am placed on short term disability.
I had intractable episodes of vertigo, severe tinnitus, ear fullness, and vestibular instability on the right side. We keep trying to hammer away at it with brief rounds of Prednisone. I am placed on Diuretics not knowing they are sulfonamides which I am allergic too. They cause severe swelling in the lymph nodes around my ears, once again it took Prednisone to bring it under control.
Mid May 2014-Mid June 2014: I develop intractable status migraine with persistent complex aura and migraine associated vertigo. Aura includes peripheral ataxia, aphasia/speech loss, altered mental status, occasional loss of consciousness, confusion, going completely blank and staring off into the distance, paranoia, perceptual changes (Alice in Wonderland), peripheral vision loss. These neurological symptoms weave in and out. I bomb a rescue infusion of DHE. I also develop a rigid neck and shoulders, and am placed on Soma (muscle relaxer).
Mid June – Mid July: My headache specialist puts me on a 5 week course of Prednisone starting at 60mg and going down week by week. By the end of 5 weeks I am back to chronic but treatable migraines. My neurological symptoms improve, my vertigo improves, the ear fullness, tinnitus, all of it. I am able to go back to work end of July.
End of August 2014: My Meniere’s Disease returns with a vengeance, I have been on the one diuretic I can take and following Meniere’s lifestyle changes since early July. I begin having Meniere’s attacks daily. It is brought into remission by Dexamethasone injections into my right middle ear and I go into remission.
Early September: My migraines become status intractable with persistent complex aura. I am put on a brief steroid course, brief improvement then relapse. I am sent to ER twice by my headache specialist. One occasion I was sent straight to ER from the clinic due to muscle stiffness, a fever of 100, severe true pain level 10 migraine, tachycardia, and altered mental status. They were concerned I had Meningitis. From here on out I run low grade fevers periodically and the Tachycardia becomes permanent, resting heart rate never below 100. By winter my hands are turning white with bluish nail beds, numbness with pins and needles, similar with feet, need to wear gloves and thick socks 24/7 in colder months to prevent it. Also periodic redness on nose and cheeks. I am once again placed on short term disability.
October 2014 – January 2015: Status migraine with persistent complex aura remains intractable. Steroids are periodically tried with brief improvement, infusion Dexamethasone, and long course Prednisone. Dexamethasone infusions resolve all symptoms for about 24hrs on 2 occasions. Depakote infusion is also tried, along with all other methods of migraine rescue. Multiple preventative drugs are tried, with no improvement, hospitalized and admitted, severe altered mental status appeared paranoid and suicidal out of no where.
Mid November: I am tried one more time on a 5 week course of Prednisone, by week 3 my migraine had broken, neurological symptoms began to improve, status became similar to end of July. I am on Botox and Amitriptyline with marginal improvement, and I am cleared to return to work on 1/15/15.
March 2015 – August 2015: Status migraines with persistent complex aura return. Neurologist switches steroid from Prednisone to Dexamethasone, given as 6 to 9 course with even taper 18mg, 12mg, 6mg. Meniere’s symptoms begin to relapse. This steroid course needs to be repeated once a month, neurologist concerned as to why this is the only thing that appears to be working.
August 2015 – September 2015: Meniere’s returns full force, same as prior year, only change is now audiogram’s are showing typical Meniere’s pattern of low tone hearing loss, diagnosis becomes definite. Put on 2 week course of Prednisone, started at 60mg, it fails. Dexamethasone injections put the vertigo into remission after the 3 shot. Hearing loss remains at 30db flatline loss on Meniere’s side.
I am placed on Lamictal 150mg for migraines, a drug that has been studied to only work for people with migraine aura, by October migraines are no longer chronic, and I have no auras at all. I am no longer taking steroids other than 3 day Dexamethasone course in mid November.
October 2015: I develop a minor lymph node or mastoid infection, no fever, aches, just swelling. I am put on antibiotics midway through the course I begin running a low grade fever, develop severe fatigue, joint stiffness, all my doctors are confused, no one knows why, all symptoms continue through April 2016, low grade fevers become a regular periodic occurrence, along with redness across the bridge of my nose and cheeks, lacy pattern red pattern on legs, hands often severely cold and numb begin wearing gloves inside the house.
December 2015: My colon shuts down, severe constipation, multiple osmotic laxatives fail, also severe swelling of abdomen, consistently look 6 months pregnant. Severe reflux for the first time. I developed severe pain in low back and hips which was totally new. I remain severely fatigued.
January 2016: I was scheduled for surgery on 3/16 with my Endometriosis surgeon. The thinking was I maybe had a little endometriosis, and a few adhesions. I had to be followed by GI and put on prescription Linzess, frequent enemas, and other laxatives as directed by GI.
February 29th: I was hospitalized for severe constipation partial obstruction by GI and PCP. No OTCs, prescriptions, enemas, were working, I was following day to day plans with GI. From that point on I could not use the bathroom without colon prep, if it wasn’t prescription GoLytely it would take several agonizing days.
March 16: My temperature was 99.5, high for me, being rolled into surgery. One week later my recovery deteriorated. Abdominal inflammation, severe pain after eating, severe acid reflux, severe fatigue, colon shut down, malar rash?, weird disk shaped rash on my shoulder, temp periodically in the low 99s.
Recent Health Log, Findings and Symptoms
April 4: My surgeon moved up my post op, after the fellow thought I had a post op infection and I was placed on antibiotics. My surgeon walks in and immediately says, you don’t have an infection, you don’t need antibiotics.
He said at surgery I had frozen pelvis, actually it extended up further in my abdomen. There was only one small spot of possible endometriosis at surgery. He said scarring like that only comes from inflammatory disease, likely autoimmune, and I needed to follow up immediately with GI and Rheumatology. He said I wasn’t going back to work for another week since an autoimmune disorder would complicate recovery. I was also urged to use the time to see these doctors, and get treatment.
PCP agreed that it is autoimmune, GI thinks something bad is happening going on but it is not IBD, my symptoms don’t match.
April 7: I was been seen by Rheumatology (Dr. Nasseri), and they wanted to test for was Lupus. My health continued to plummet. At this point I was so ill I could barely make it across the room and could barely eat.
After starting Dexamethasone (on a whim), everything resolved with 48 hours, my entire GI track was back to normal within 24. I was eating and pooping like a champ.
4/8-4/15 Dexamethasone dosing: 4/7: 18mg, 4/8: 18mg, 4/9: 12mg, 4/10: 12mg, 4/11: 6mg, 4/12: 6mg
Symptoms 4/9-4/15: GI function normal, no abdominal swelling, energy levels normal, no stiffness, no joint pain, no fever, no rash, normal sleep, no finger or feet coldness and tingling. Rash on shoulder returns to normal skin color.
4/16 Saturday am: stiffness head to toe worst in hands, feet, knees, and hips, Raynaud’s, severe fatigue, hip pain, low back pain, body aches, constipation, severe reflux, pain after eating, abdominal inflammation belly hard look 6 months pregnant, fever of 99.5 by mid afternoon, spikes to 100 by early evening, 30mg Prednisone taken at 9pm. Prednisone: 30mg
4/17 Sunday am: pain resolves, stiffness resolved, gi issues resolved, though partial, low appetite
Afternoon: Spent one hour in shade on front porch, fever returns, break out in rash malar, chest, weird red lacy pattern on legs (this may have occurred Saturday), a few hours after Prednisone 40mg, temp normalizes, rash improves.
4/18 Monday: Fever: 99.7 morning on 4/18 resolves by 6pm, low appetite, abdominal inflammation and body aches begin to return.
Prednisone: 30mg taken at 11am, put on SPF 50 sunscreen
fever returns 99.5 at 11pm
4/19 Tuesday: Same as 4/18, fever at 99.8, rashes return worse in am. Restarted Dexamethasone 12mg, after meeting with Dr. Nasseri. Avise Lupus Assay (Exergen) was negative. ANCA taken, also negative. Result given on 4/26.
4/20 Wednesday: Was doing very well, no notable symptoms except maybe temp in the 99s.
4/21 Thursday: Felt ok during the day, fever 99? Became very fatigued and ill in the evening.
4/22 Friday: Fever: unknown, colon issues returning. Dexamethasone 6mg.
4/23 Saturday: Fever: 100, lots of skin redness: nose cheeks, chest. No colon movement, abdominal distention, stiffness, hip & back pain, panic attack.
4/24 Sunday: Fever: 100, lots of skin redness: nose cheeks, chest. No colon movement, abdominal distention, stiffness, hip & back pain.
Dexamethasone: 8 (maybe 12?)mg
4/25 Monday: Fever: 100, lots of skin redness: nose cheeks, chest. No colon movement, abdominal distention, stiffness, hip & back pain.
4/26 Tuesday: 100 degree fever, since Saturday. Skin: malar and look covered in sunburn. Body aches, joint issues. No fatigue, but well steroids. Colon shutdown, abominal distension.
Evening: My amazing PCP office helped me over on call, they are going to hit the ground running in the morning, they agree this is autoimmune or some weird reaction to the steroid. I’m good for the night.
4/27 Wednesday: Fever broke. Spoke with Dr. Martin. Discussed no sign of infection and negative ANA result. Discussed that I’d continue on 12mg of Dexamethasone until my appointment on Tuesday 5/3.
By Wednesday evening all symptoms have resolved, and have remained so since that time. Starting Thursday temperature between 97.2-98.6 (my normal range since childhood).
Some signs of steroid side effects starting Thursday night. Easier bruising, fragile skin. However, staying hydrated, eating well, overall sleeping though not able to get more than 6 hours.
4/29 Friday: Spoke with Dr. Audlin, concerned about the steroid dose, but he is glad that symptoms have remitted. Notes from Martin and Audlin are complete in Epic, both anticipating results of Hopkins Rheumatology appointment.
The Weekend! Eating well, drinking well, colon’s working!, on 10mg Dexamethasone, no symptoms, no problems at all until right now when I look like:
Dr. Nasseri has apparently been calling Dr. Martin and Audlin. His behavior was very concerning, and I sent a complaint to the Medical Board of Maryland (first time ever!). I attached this in Lucy as well, in case he is bothering you, or details of my “care” with him are needed.
My insurance company since July 2015 (CareFirst BlueChoice HRA) has also made my life difficult. My summary with them is attached as well, it overall is not important, just for the sake of being thorough 🙂
And if you have any questions in regards to the background of your patient 😉
PS: And despite today’s red face, everything else is fine and I’m running a balmy 97.4.
Thank you all again for all your help, and wishing the best for tomorrow!
I hereby sign with my informed consent that I trust each of you with my health information, and to share it appropriately with me and one another by any reasonable terms you deam. On the phone, on paper, in epic, online, just not on Google or the Evening news!
With thanks and love,