Timeline & History

[Super_sally888]

Here's the REVISED timeline/summary I prepared for the neurologist on Thursday.  I guess this indicates that something autoimmune is going on, at least.  Too much info?  Sorry this is long...

Sally Clark – Summary at July 2007, 37 YO Caucasian Female, DOB 4 Sept 1970.

Bloodtest Results - 2007

Date Test Result Range
22 Jan 07 FT3 2.03 2.8-7.1 pmol/L
        FT4 10.58 12-22 pmol/L
       TSH 0.573 0.27-4.2 mIU/L
(Following this result increased t4 by 50 mcg/day).

12 Feb 07 Total Protein 73 66 – 87 g/L
Albumin 45.8 34-48 g/L
Globulin 27.2 32-39 g/L
Creatinine (F) 75.52 45-84 umol/L
SGOT (F) 29.6 up to 32 U/L
SGPT (F) 27.5 up to 31 U/L
Prolactin 436.2 102 – 496 uIU/ml
Potassium 4.4 3.5-5.0 mmol/L

7 April 07 FT3 5.01 2.8-7.1 pmol/L
FT4 13.81 12-22 pmol/L
TSH 0.039 0.27-4.2 mIU/L

11 June 07 OGTT FBS 5 3.89-6.38mmol/L
OGTT 1st Hr 5.1 < 9.2
OGTT 2nd HR 4.5 < 7.7
OGTT 3rd Hr 4.1 1.68 mmol/L
LDL 1.70 1.56-4.55 mmol/L
VLDL 0.35 0.25-0.79 mmol/L

                FT3 4.49 2.8-7.1 pmol/L
FT4 16.58 12-22 pmol/L
TSH 0.023 0.27-4.2 mIU/L

Prolactin (F) 579 102-496 uIU/ml
                LH (luteal) 8.75 1 – 11.4
FSH (luteal) 3.95 1.7 – 7.70
Estradiol (luteal) 67.01 43.8-211 pg/mL

8am Cortisol 278.3 171 – 536 nmol/L

15 June 07 Vitamin D 220 47 – 144 nmol/L
iPTH 56.3 12 – 72 pg/mL
Antithyroglobulin ab < 20 (negative)< 40 IU/ml
Antimicrosomal antibody Negative
Anti-TPO Antibody 26.9 (negative)<35 IU/ml

6 July 07 Serum Ferritin 13.02 6-81 ng/ml
6 July 07 Serum Transferin 234 212-360 mg/dl
Serum Vit B12 312 223-1132 pg/mL

Other Diagnostics 2007
- Chest X-ray clear
- Testing for & diagnosis of asthma
- Repeat MRI: showed Microadenoma, white spots.

Current Medications at July 2007
1. Dessicated thyroid 125 mcg + Thyroxine 100 mcg (adjusted 23-7-07)
2. Parlodel ½ tablet / day (at bed time) (started July 07)
          (Nausea ongoing & bothersome side effect).
3. Vitamin B12 oral (500 mcg x 3/day) (started July 07)
4. Antihistamine (celestamine), 1 tab 2pd, and as required to manage symptoms (dosing changed from as required (Jan 07) to 2/day in July 07).
5. Symbicort – 2 dose/day (since Jan 07)
6. Ventolin – as required & before training session (since Jan 07)

Medical Timeline
1992 Consult with rheumatologist for back and joint pain (wrist / hips).  
No specific findings.  No treatment.  Suggested it was psychosomatic.

1995     Lived and studied in China.

End 1995 Moved to Hong Kong to start work with environmental company.

1996 Shingles attack, treated with antiviral meds.

1997 Moved from Hong Kong to Philippines (for work).  

1998 ER visit for kidney stones.  Pain killers given. Resolved without treatment.

1999 Consult Gastroenterologist for reflux, hyperacidity, abdominal discomfort.
Diagnosis Gastritis.  Use PPIs, antacids, Motilium.  Symptoms continued.

1998-1999 Rapid weight gain despite diet and regular exercise (tennis, gym).  
Progressive fatigue, depression, exercise intolerance.  Disrupted menstruation.

Mid 2000 Weight up to 210+ lbs. Severe symptoms.  Finally diagnosed hypothryoid, polycystic ovarian syndrome, IBS. Treatment levothyroxine, continued PPIs, Diane 35, metformin. (stopped Diane 35, Metformin, PPIs after about 1 year).
Parathyroid problems with elevated iPTH, low calcium? Treated with calcitriol (calcium and iPTH levels returned to normal after about 2 years and discontinued calcitriol).

Gastric symptoms continued – but improved with thyroid treatment.  Continued with diet and exercise.  Weight loss progressed.

Mid 2004 Commenced triathlon activities.  Weight about 165 lbs.
Continuing stomach problems.  Chronic D-C.  Nicknamed “El Cubetta” – “the toilet” by triathlon team mates.
Muscle cramping on-going problem –particularly in swimming.  Improves a little with continued conditioning.
Thyroid med dose adjusted up.

Sept 2004 MRI subsequent to continuing long-term galactorea. Pituitary microadenoma noted. Started on parlodel. Discontinued due to side effects (after about 6 months).

Mid 2006 Father in Australia died from skin cancer (after 6 year battle)…
Started desiccated thyroid (about July 06) – assist with symptoms particularly mood and energy.

End 2006. Training for Iron-Man.  Tummy problems dramatically worse – daily chronic D, bloating, reflux, belching, pain (affects training).
Chronic itching.
Chronic non-productive cough.
Dec. Consult Gastro – Endo/Colonoscopy carried out.  Diagnose IBD from colonoscopy biopsy, no endoscopy biopsy carried out.  Pt. declined medication.  Decided to trial gluten free diet (based on family history).  Near complete resolution of gastric symptoms with diet change and strict adherence to GF diet.  Symptoms recur if gluten is eaten.
4th qtr - first notice visual symptoms: flashes of light, movement in peripheral vision.  Intermittent only.  Occasional base of skull headaches.

Early 2007 Consult allergy asthma dr. (Dr. De Vera) Asthma diagnosed. Started steroid inhaler & ventolin as required.
Itching continues – low back, trunk, face.
Skin allergy testing +ve for rice, chicken, mango, tilapia, fish paste, dust mites.  Systemic response to allergy testing & was treated with oral steroids.  Prescribed daily antihistamine.
Have not done strict elimination diet yet, but initial testing seems to have fluctuating & non-predictable allergy response (ie. Itchy one day from eating something, no response the next day).….

Feb 2007 Completed first Ironman Triathlon in 16:45.  Good experience. Want to do it again.

June 2007 Repeat MRI: Microadenoma, white spots.

Mid 2007 Weight about 150 lbs.
Visual symptoms become much daily event.  
Strange sensations: occasional feeling that face is numb (in places), prickling sensations (over head), burning sensations in legs.  Base of skull headaches more frequent.  More tired than usual / concentration poorer.  Delayed training recovery compared to teammates.  Often catch feet when walking (shoes?? Lazy?? – Don’t usually wear heels)… am famous for bumping into things / dropping things / being clumsy… disassociated from body feelings…
Hot flushes.
Itching symptoms (not daily).
Muscle cramping much worse during swimming / after training / even at rest.

Doctors: Endocrinologist: Dr. Mike Villar
Asthma Dr.: Dr. De Vera

[Quixotic1]

Igoing to be saying the obvious, but it's also for the forum and any new people reading.  The idea that MS must be "diseeminated in space" means that the a person has evidence of white matter lesions in more than one place.  You have several abnormalities in the brain - that's one place!  Then you have evidence of deymyelination in the optic nerve - that's the second place!  You have balance difficulties - that would be the third place!  You have tremors - that is an altogether different set of nerves (a different "place").  She wants more lesions?????  BTW - What were her opinions on the muscle enzyme elevations?  

Also, the elevated (but not terribly) EBV IgG just indicates prior infection.  IgM is produced early in an infection and then disappears.

Clinical evidence is made up of 1) objective findings on exam, 2) paraclinical evidence which includes result of testing such as LP or EP's, and also of neuroimaging, such as MRI.  I have no problems with the additional tests (spine MRI and LP).  But you can see where I'm going.  The triad of Optic Neuritis, multiple MRI lesions, some enhancing, and abnormalities on neuro exam are quite sufficient for a definite diagnosis.  I'm sorry.  Those were probably words you didn't want to hear.

Today's goal, if I can get my eyes to settle down will be to explain, and EXPLODE the misconceptions about the International McDonald Criteria.

I hope you're doing okay with all of this.  I'm for an end to the not knowing and wishing it weren't pointing this way.  My thoughts are with you.  Quix

[Want to feel well!!!]

You certainly have been through the ringer!  You mentioned that you did not know if you were ever exposed to EBV, but many people don’t realize they had mono.  My EBV titers are quite high, and at my first neuro visit he asked me when I had mono and I told him I don't remember ever having it.

Good luck with all our tests.  I hope you get an answer!

Wanna

[Super_sally888]

The EBV results above are wrong.  Wrongly reported to me.  Got original today.
IgG is +ve at 62.4 (cutoff 11), IgM is negative.

Saw new neuro. She didn't do any exam, except eye and to note that I have tremor. She read the history / timeline and saw results and says the EVP is quite sensitive and is a concern.  She says I have the episodes over 'time' (from the history), what she wants is clinical evidence of 'space'.  We have suspicious lesions on Head MRI.  She has requested a cervical MRI with contrast already.  Will do this tomorrow morning. Then, depending on the results she will request a LP.

S

[Super_sally888]

Just talked to Dr. Mike.  He discussed my case with some other drs.  They want to do a Lumbar Tap to check what's really going on..... have a new dr. to call - will see her this afternoon.  Oh how I can't wait!!! That is sarcastic!

[Super_sally888]

Hi Quix,

Thanks.  Yeah, I researched the net too and an abnormal VEP does seem significant and would be highly indicative of MS, particularly considering there are some hyperenhancing lesions on the MRI.  In early MS all other testing may be apparently normal and clinical signs may be subtle.  I guess if they really want to rule it out they need to do a LP and check.  I think for the sake of knowing I should push this with the new dr.  After all the earlier we know, the better our prospects of managing it if I do have it.

I have to clarify.... the doctor that said the VEP was nothing to worry about was the opthamologist (who said no sign of optic neuritis upon examination).  The neurologist told me everything was fine.  Unless he is a liar, I think that he never reviewed the test results.  He was not at all thorough and left everything up to his residents (and he never saw the MRI film - because it never left my side the whole time I was in the hospital).

I told my endocrinologist Dr. Mike about the abnormal VEP, I also mentioned to him that the neuro dr. didn't see the MRI.  Dr. Mike has asked me to call him today.  He wants to refer me to a second neurologist.  He is still tending towards MS as the diagnosis.  I am very lucky to have Dr. Mike on my case.  I am more and more impressed with him as time goes by!!!  He also knows me well having been my doctor for more than 4 years (he's been managing my hypothyroid and endocrine stuff).

Anyway, I got some more tests back yesterday.    My allergy dr. (Dr. Michelle - I am also very impressed with her and she and Dr. Mike are in contact about me) tested for EBV igA and igG.  The igG was negative, the igA was positive with a value of 52 (negative is <11).  Don't know what it means if anything other than that I have been exposed to EBV.  

More tests tomorrow... and I have to go to medical records and get everything to compile to show the new neuro......

Went to the gym this morning.  Workout was ok and short by my usual standards (run and weights).  But now my muscles feel sooooo heavy, and the tremor is more pronounced.... nothing new..... But mentally the exercise helped heaps!  The saga continues....

Sally

[Quixotic1]

Hey, Sally, something you said sparked a review online.  You said at some point that your Dr. said that an abnormal VEP didn't mean much.  I reviewed many articles on the subject and they don't agree with him.  The VEP is remarkably sensitive for eye pathology.  The ophtho field wasn't happy with the traditional tests which had a "false postive rate of only 2.5%."  Since 2004 or so they have been combining techniques such as pattern reversal and pattern onset and using more than the midline channel to record.   Now the expected false positive rate is about 1.5%.  I think it needs to be taken a lot more seriously than they are doing given those numbers.

This is a very useful test when it's positive.  Also, in the context of MS or any insult to the optic nerve, Optic Neuritis , the visual exam of the optic disc is NORMAL in 50% of the patients.  The further back the damage of the myelin the less the disc will show pallor or other changes.  Here is a link to that:

http://www.medscape.com/viewarticle/556957_3

So when your ophtho said it looked normal, that was great, but doesn't tell us anyhting.  The abnormal VEP does tell us something.

Just a heads up.  Hope you're feeling well.  Quix