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 Quix.  Hope you don't get this till tomorrow. :)  And that you have a great sleep.  My private email is the same as my name here but uses yahoodotcom.

The tests they did for neuro are VEP, EMG-NCV, EEG, SSEP, ABR/BAER.  All were ok except the VEP and hearing which I mentioned above.

My Endo (dr. mike) has ordered repeat CK isoenzymes, which I will do tomorrow or friday (at a different hospital).  The Allergologist (dr. Michelle) has ordered  Urine 5-HIAA and Serotonin (after talking to dr. Mike) and EBV, IGM, IGG.

They also mentioned that ESR was high, which means I guess something inflammatory is going on.  ANA was negative.

I will try to get all my lab results from hospital records when I go deliver my gallon bottles of pee on Friday!  (Gawd - that is such an EMBARRASSING test).....

Gotta go, still at work...

Sally

[Want to feel well!!!]

LOL

[Quixotic1]

Uh...neuroquix.

[Quixotic1]

Oh, Phooey!  that wasn't what your needed to hear.  It sound like that Neuro (how did he fit into what you just went through?)  was not thorough, nor truthful, so how can you feel confidenc in him.

I am so tired of parents and sibs doingthe it's all in your head routine.  You're the third this week.  I hope it is just fear and fierce denial, but we all know "Denial is mor than just a river in Egypt."  I think sometimes they can't bear the thought of real illness in their kids, so they retreat into blame.  It's stil a s****y thing to go through.

The VEP - conduction delay is what demyelination causes.  I will look up the specifics and see if I can interpret the numbers.  As to inaccuracies, anything can be inaccurate, but in this typ of testing you're more likely to get contradictory, and thus uninterpretable numbers, rather than consistent findings.  

Now you need to get someone responsible to look at the MRI and give a neurologist's opinion.  Yes?

Normal EMG is great evidence against a myopathy, I think.  And normal NCV is against any of the peripheral stuff being peripheral in origin.  Now you need SSEP if you didn't have one -SomatoSensory Evoked Potential to see if their is any conduction slowing between the spinal column entry of the sensory nerve and the brain.  

It's 12:40am here.  I'm going to log off and see if I can find something that gives norms for the VEP.  Good to hear from you, sorry you're back in limbo.  Have they rechecked the CK isoenzymes?

Quix  also the way you tell us how to get ahold of you via private messaging is to work the words, but not the address into a sentence, so the filter on the forum doesn't recognize the word -at-something.com format.  You can privately send me a note using my nickname of neuroquiz using the email program of gmaildotcom.  You just have to be sneaky.

[Super_sally888]

Hi Everyone,

Hope you are all Ok. Update. & Medical question on VER test.

Am feeling a bit better today.  The dramatic flushing and burning comes and goes, but not so bad and mainly on my legs.  My whole body still has a fine tremor.... my hands are shaking continually, it is quite disconcerting.... have to concentrate to do things like eat and write...

Remember I said all the neuro stuff was fine?  That's what the neurologist told me.  Anyway I went and got copies of the reports from the neurological tests today  (had to go pick up bottles for the 24-hr urine test they will do for carcinoid syndrome).  The neuro tests (muscle, nerve conduction, eeg)  are all normal except: 1. Hearing (mild loss in one ear and moderate in the other). This is ok.  I knew that. and 2. The VER test.

The test says
"pattern reversal stimulation of the right and left eyes, with average preset count at 100 revealed P100 latencies at 117.9 msec and 117.0 msec on the right and left eye respectively.  The VER shows amplitudes of 7.2 uV and 5.7 uV on the right and left eyes.

Impression: This is an abnormal VER study showing bilateral conduction delay as well as low amplitude responses."  

Is there any way this test could be inaccurate and everything really is normal (aside from the fact that I get flashing lights and visual disturbance, delayed light adaptation and others).  If it is abnormal, is this very abnormal, and what could it mean?

Is it possible that this is the only sign and all other tests are apparently normal, even though I have some symptoms?

Should I try to get a second neuro opinion?  My Neuro Dr never examined me or saw the MRI film (it was only seen by his resident) - I know, I brought the film with me and it was never taken from me - the Neuro resident in the er just examined it against the ceiling lights of the ER.... They also didn't complete an eye exam... though they told me they would... Anyway, he's  not "My" neuro, because he told me nothing was wrong..... and sent me back to my endo to try to unravel the ball of whatever is going wrong....

Will have to go to records section and try to get the rest of my lab and test results so I have a full copy....

So now we start beating around the bush....

I just got a big lecture from my "Mom" on how I should consider all of this might be caused by stress and maybe I should just let it go and stop worrying about it....  Becuase when am I going to stop searching?  When I run out of money????

If I get some answers maybe I could!  I've been kicked off my training squad already.... so one big part of my life just went bye bye until there are some answers...



Sally

[6-paq]

Wow Sally, I'm sorry that you've been through all of that and STILL don't have any answers.  It does appear that you've got a good team on your side..

Many prayers that you can finally start to feel better soon.

Take care, Pat