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]

Hi.  Got wifi on my own computer now so I can type better.  Still in the hospital.  They are going to do all the neurological tests this afternoon.  Evoked potentials, EEG or something like that, plus eye tests etc.c

Feelinhg pretty bad though not in pain except for muscle cramping and nearly continual headache and wierd sensations happening all over.  Gotta go back up to the room as I'm expecting the drs soon.  Take care all.

Sally

[Quixotic1]

Oh dear!!  I'm sorry you decompensated so badly!  Which enzyme prompted the admission?  Well, this sort of does an end run (American Football term for by-passing the normal channels to get to the  goal) around all of our insightful recommendations on how to get the doctors to take you seriously.  Sounds like you have a gaggle of them (that's a herd of doctors on rounds) poking and prodding you.  I really don't mean to make light of this.  I'm sure you're feeling devastated.  Sort of wishing you had been somaticizing, it just didn't sound like head case stuff.

Are you feeling bad because it's all so "real"?  Or are you really feeling crummy?  I'm thinking about you every minute.  Did they begin any meds?  What kinds of weird sensations?  If it's MS, sounds like an acute relapse.  I'm so glad you joined us before this blew up.  Now we all know you and will be awaiting further word.  Your family - Quix and all

[Super_sally888]

Hi.  Still admitted.  Don't know when I will be getting out.  They probably won't discharge me til they finish all the tests.  They started the neuro tests today.  The first was one where they put electrodes on your head and play sounds. You are supposed to sleep.  They aborted after 30 minutes.  Said they couldn't get any reading that made sense.... I was trying to relax, but the test itself was evoking vivid memories, then one frequency made lights flash behind my eyes, really really wierd.  They will repeat that on monday.  The others today were visual evoked potential, eeg, and nerve conduction where you lie on yoru tummy, theyput electrods on your legs and up your back and then zap you with electricity.  Pretty painful - good thing I knew it wouldn't do damage.
Tomorrow they do muscle study.... stick needles in muscles and zap you (i guess).  Should be interesting. Just wish it wasn't me.

This kind of ends my hope that I was just being a hypochondraic and somatasizing.

Failed the balance tests in the ER when they first admitted me. Reflexes are all still normal.

It is pretty devastating to have someone put what you suspect into words.  It makes it so much more REAL.  Am have fasiculations (lots of them) - the neuro helpfully pointed it all out.  Muscle cramps. Ice/burning sensations in various spots, and if I get tired I start walking like a drunk.  It's ok if I 'm not tired.  Today was much better than yesterday after they finally let me sleep.  Had friends came for dinner and we went to restaurant downstairs.  At the beginning was fine.... but going back was already tired and was weaving around - even bumped into the wall.. they thought I was going to faint.  NOT.  Just I wasn't concentrating on walking hard enough....
I am so scared.  I so want this to be MINOR.  I want to be one of those who this is not going to be life changing.  I haven't cried yet.  I am not letting myself think about it.  But man. This is so NOT easy.  Gotta go.  other emails to pay attention to.  Am so glad you are all here. Wish I didn't have to share this journey with you all.... but guess I'm already in the same carriage.  

Am not feeling too bad.....
The enzyme was something MM and something MB.  it is usually high in heart attack.  Mine is about 4 times normal.  This is why the endo insisted on immediate admission as potential MI.  But now I find out it can be high in abdominal injury or in neurological insult!  Guess something is moving quickly at the moment.  Acute exacerbation or something.

No meds yet.  Just paracetamol PRN and bed rest. The neuro said he will discuss with me what drugs I will let them give me.  Sounds ominous.  I don't know what drugs are available here.  They do let me walk around though.  I actually feel better with activity than sitting stewing - AND my body is used to activity!

Thanks all.  I am so glad you're all here.  At least you guys understand.  Talk to you soon. Am trying to stay positive.  I sure as hell am going to fight this!

I guess it is better to know sooner rather than later.... so I can start dealing with it. and trying to minimise the damage.  Is anyone here up on the low saturated fat diet I was reading about?  Any input?  I guess it wouldn't hurt.  

Sally

[Want to feel well!!!]

Sally…this might sound odd, but be thankful you are getting so many tests done at once.  It’s much better than being told, “Sorry, we cannot do anything for you.  B-bye.  Don't let the door hit you on the way out.”

It sounds like you are going to have EMG/NCS tests.  I just had then done and they are not as bad as they sound, and actually the surface shocks are “worse” than the needles in the muscles.  He shocks are a bit uncomfortable, but nothing intolerable.  The tiny needles are nothing compared to the shocks.  I have numbness in my hands and feet (worse in feet) so that might have helped with my comfort level.

Keep in touch…

Wanna

[Want to feel well!!!]

Clarification...the tiny needles do not really hurt...I reread my post and I just wanted to make this clear.

[Want to feel well!!!]

My typing ability seems to be getting worse...sorry for the typos.