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

[Super_sally888]

Does anyone know what these tests could mean.  The most abnormal test I got was the CK MM and MB.   They have ruled out heart attack through more sensitive cardiac enzymes, ecg and 2-d echo.  They are scratching their heads...  any input?  Does anyone know if there is any significance to the CKMM getting lower, while the CK-MB is rising?

Last Monday was: CK total - 100.47 (range 24-2-4),
                              CKMM - 19.47 (range 24-179)
                              CK-MB - 81.00 (range 0-25)

Last Friday was: CK total - 99.29 (range 24-2-4),
                              CKMM - 15 (range 24-179)
                              CK-MB - 84.2 (range 0-25)

Sally

[uk2]

Hi

Was following your post so pleased your home. Cant really comment on any of the medical stuff only that the doctor did confirm with you that this was not in your head so dont even worry about that!! you know too something is wrong and they will find out and hopefully soon.

God Bless

[frann]

Hi,
I am also new to this forum but i wanted to let you know i read you threads & was sorry you had to be hospitalized... it sounded like a rough time but happy to hear you are home.
Just wanted to say i will keep you in my prayers.
God bless.

Frann

[Super_sally888]

Hi everyone, thanks for your encouragement.

I am home. Discharged today. And almost back to square one.  Although the neuro dr. originally was sure it was ms based on history and MRI, all of the muscle and nerve testing apparently came back normal.  So he is not prepared to make any diagnosis other than to say that there is obviously something going on and we should just watch and wait.  He referred me back to the endo for ongoing follow-up.

Of course, I know that negative nerve and muscle testing doesn't mean I don't have MS.  Just means that nothing is showing up.

Actually, I was supposed to be discharged yesterday.  I was given fish for lunch yesterday and about 1 1/2 hrs later, just as my endo was discussing the lack of clear findings, started to feel very hot... I was telling him that and suddenly my ears started burning.  Aha! Allergy reaction. Told him. This is the third time I have had such a reaction.  I went bright red all over and very hot.  Doc Mike gave me antihistamine first, then when I started getting breathing trouble benadryl and I slept all afternoon.... (probably not a bad thing as I had a bit of an anxiety and cried most of the previous night - hospitals are very lonely places) woke up still feeling hot but much better..... Then they called my allergologist who had already visited me informally once I texted her I was admitted (she is a very nice and very smart lady) (the first time this happened was early this year - in my allergologists office after they did allergy skin testing, the second time was about 3 weeks ago - but both without breathing problems).  She has given me high dose prednisone for 4 doses over 3 days... until tuesday......

She and Doc Mike agree that MS is not ruled out... but will not be diagnosed at this stage... guess these things take time.... and can't blame them for wanting evidence...  (maybe a blessing as far as insurance is concerned - I found some small  print that excludes neurological conditions).... and they think that the increasing allergy reactions (asthma and food allergies in the past 12 months or so) are a symptom of something else... autoimmune and /or endocrine - to be explored further.  

I asked them both separately if they thought this could just be pshychosomatic and they both said no - there is something going on, just they don't know what yet...

They retested the enzyme that prompted my admission.  CK-MB.  This is a marker usually for cardiac damage (ie. heart attack). I was admitted for evaluation of suspected MI.  But all the cardiac testing including 2-d echo came back clear....  After 3 days rest the CK-mb was even higher <25 is normal.... I was 81 on admission, and 85 just prior to discharge.  They both said they had never known it to be high in anyone except following heart attack.  However, the neurologist said it could also be high if there was brain injury or abdominal injury....  ??????  I will have to research further.

The Neurologist said that once all the results were compiled Dr. Mike should review everything and see if any picture emerged....  I will get a second opinion from another neurologist once I have all the results.

I am both relieved and upset not to have a diagnosis.  I am really questioning myself.  How can I be feeling like this and have nothing clearly wrong?  Could it really be all in my head?  Just don't know.  Maybe the sensory stuff, but not the visual stuff.... I don't know how I could possibly be imagining that.... will see if it improves with the prednisone over the next 2 days..

Lost about 3 kg in the 5 days in hospital.... hope I can maintain it.... very expensive 3 kg!!!!!! And the enforced rest, though reluctant on my part, surely can't hurt.

Don't know what to do or think now.

For now allergologist said we will try to get the asthma and allergies under control, and we will start exploring other autoimmune links... whatever....

Back to work and training tomorrow.

Sally

[floridamom2]

I have been out of the loop for a few days but want you to know I am here for you and proud to be part of a great group of people here to support you through this.  Take care and Good luck with the tests.  I hope you get home soon!
Kristin

[Quixotic1]

The diet you may be referring to is the Swank Diet.  It was promoted by a Dr. here in my home city.  He's now retired.  I will see if I can find a good summary of it and reprint it here so you don't have to waste your time surfing.

If your nerve/muscle tests are very abnormal please ask your doctor about Guillain-Barre or CIDP.  I bring it up at lot.  Truly I'm not obsessed with it, but it can mimic MS.  It's called Chronic Inflammatory Demyelinating Polyneuroradiculopathy.  It is a relapsing/remitting conditon of demyelinating attacks on the "peripheral nerves" as opposed to the CNS in MS.  It is diagnosed by characteristic history, high protein in the CSF, and characteristic changes in the Nerve conduction studies.  It can have "white matter" lesions, and many of the other nonspecific symptoms of MS like fatigue, cranial nerve involvement, heat intolerance.  It is important because, it is often very TREATABLE, using IVIG or plasmapharesis.

I would do anything to be there with you (except the Phillipines sounds hot and humid).  Is someone there with you?  I'm thinking about you constantly.  If this is MS, it does NOT mean that this is what your life will be like!!!!  A relapse is often very acute with many symptoms.  When it remits a huge amount of what you're going through may go away.  Or it could be as simple as a neurological viral infection.

It's SO NOT FAIR!!  Whatever you're going through should not happen to some who has been so good to their body and their spirit.  When the MS happened to me I was already down and "out" of the swing of life.  

I think your Dr. Neuro sounds very invested in your care and has really planned the gamut of tests.  I'm hopeful he will find something minor and treatable.  You're in my thoughts.  Quix

I'll be back here with the details of the Swank diet.  I'll put it on a separate thread so that this one is for messages to you.