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]

Thanks Quix.

Exercise is one of my ways of dealing with stress. I have been asked to reduce (and have) that for now (but am still doing something nearly every day)....  and am sleeping more. :)  That helps....

I also get stress release from my pets (my two darling dogs, and two cats, plus fish), and from singing, from being with friends, I like Sudoku and reading, and movies when I have time..... actually, I enjoy my life very much and have no idea of what 'boredom' means....

That would be a nice thread.  asking what people do for stress management.... the things they most enjoy in life... very positive thread...

Will get most results by Monday, but won't see drs till I get back from travels.

Hope you're going well.  Thanks so much for taking time to answer.  You must know how much it is appreciated.

S

[Quixotic1]

It all possible the way you put it.  Try some meditation, some stress-reduction techniques.  Straighten out the thyroid (which could be a major micmic/ player here)  Give your self a little destress time.  And you can be our poster girl for the power of fear, stress and nonspecific, but very disabling symptoms.  

Is the trip to Malyasia in between now and the results?  I hope so. It will take you mind off things.  

Stay in touch, Quix

[Super_sally888]

Quix,

Yeah.  I'll come and have marshmallows!  And top it off with port, and toast that neurologist who bounced into my hospital room and declared you have MS and then bounced out again!  Then 2 days later comes back and says nothing is wrong.... and maybe my endo can work it out... (my poor endo.... he says I am giving him a headache - that's when he referred me to a second neuro for another opinion.  I told him I am giving myself a headache.  I am almost embarrassed to see him now...).

I really want this not to be.  And that's why I will get all the tests done. So I can prove or hopefully disprove and at least reasonably define what I am dealing with.

Had drinks with my team mates & friends last night.  After got to talk to my coach who said that he suspects somatization disorder rather than anything else (and I want it to be that - because then there is nothing wrong and then I can ignore it - and somatization is not a fake condition, the patient really believes what he/she is feeling..)...  

He thinks I am putting on / playing up and maybe just told my doctor things the wrong way so that they raised inappropriate alarm levels.  Particularly that I didn't 'feel anything specific' or sudden but got hospitalised with suspected MI (like I have no risk factors), and being tired is a normal part of the type of training we do, and why suddenly this talk of MS....

I have to acknowledge that all this poking prodding and questioning makes one hypervigilant and maybe reading more into symptoms or feelings than maybe are really there, and of course that affects how you feel and act - maybe self fulfilling prophesy.  Was I really off balance, clumsy, or was I just not concentrating hard enough / being careless......  Maybe I wasn't paying enough attention during the VEP (or maybe it's my contact lens). The white spots on MRI are non-specific and could be from anything... strange sensations are classic for somatiform disorders...

I am being teased so much (I should not have said anything to anyone and have to learn to keep my mouth shut)... MS stands for "Malikit Susod" (Big ****), Mad Sally, the treatment which is 'multiple sex' partners.. (these are guys you know and their brains are somewhere near their little heads much of the time)..... someone else was sick with high fever - he also had MS "malaria suspect", anyone have a headache - oh, it must be MS ....  

Thyroid problems and endocrine problems can play havok with one's body... and I do have that...

His other point is that even if it turns out that it is something like ms (he will let the drs finish their investigations before making final judgment).... it is very important that I avoid acting sick or weak, because that in turn will be self fulfilling, and not conducive to a happy active adjusted life.  He does have something here...  It is all about the attitude..

Of course I want to deny the possibility.  I am terrified of what it might mean if I have it.   Wondering how I could tell my family (haven't told them anythhing yet and won't until and unless I have a confirmed diagnosis... and maybe not even then if I don't have apparent symptoms (they only see me once a year for a week or so..) anyway...  

I am scared about why I am doing this to myself if I don't have it - disrupting so many things... and not getting on with my life....  I am wondering if this reflects stresses in my life (I do have major stresses in my life... but so does everyone)..  but I can also list the things that are normal.... normal reflexes, no heat intolerance, no weakness, normal EMG, EEG testing....

Play along with me for now..... :}..... it will all shake out in time....   Perfect example of DENIAL here.  But Gawd I hope that DENIAL is justified...... and I can just laugh and say "drama queen" about myself in a few month's time...

Thanks All.  Just venting.  Only another week or two and the testing will be finished...

Sally

[Quixotic1]

To answer your question, Yes, but only from the outside (history and +/- on physical).  Somatization disorder is an umbrella term for several disorders.  The following list is not official, it came off the top of my head.  I don't know all of them, but mostly it refers to:

1) Conversion disorders  - in which the patient truly suffers from an apparent neurologic problem - blindness, weakness, paralysis, amnesia etc.)  , but it cannot be verified by any known tests.  Blindness - pupils react, EVP is normal, but patient does not percieve vision.  It is not induced (factitious or malingering), but felt to be a severe reaction to severe stress.  Yes, the brain can convince the person, but not the doctors' of something. (And definitely not the MRI machine)

2) Factitious disorder in which the patient causes symptoms to reap the secondary gain of sympathy, attention, ect., Muenchhausen's.  This is not the same as malingering.  This is a psychiatric illness.

3) Anxiety/Somatization disorder - (Medical Student's syndrome) .  Such intense fear of a disease that symptoms are imagined or internally exaggerated to mimic that disorder or some disorder not always clearly feared.

4) Hypochondria -  Fear that all symptoms or perceived bodily sensations signify something grave and life-threatening.  Constant seeking of medical ressurance and responds poorly to reassurance.  Feel your heart beat and become convinced you are having a heart attack.  All headaches signify brain tumors.

5)  Malingering - Faking symptoms for personal gain - get out of work, collect welfare, etc. (this is fraud or a crime, or at minimum, lying)

Then, there are people with real and serious symptoms and the potential for receiving a nasty diagnosis.  Yes, the anxiety associated with this state can magnify little, inconsequential sensations into possible symptoms.  Human, understandable, not really somatization.  At the stage of seeking a diagnosis we all become hypervigilant and oversensitive to things we would have ignored before.  Also we recognize things we dismissed for a long time and now see as possibly part of a growing pattern.  I think this phase is inescapable for most people.  It also passes.  

Your question, silly girl, is also part of denial.  "Maybe it's not true.  I overstated how I feel.  Maybe I skewed the way I described things and gave the wrong impression.  Maybe the lab was wrong or I forced the test to be positive."  For me it was, "I wrote my timeline when I was already convinced I had MS.  Even though it was all true, maybe I skewed things so that they could only sound like MS and 'convinced' my neuro.'"  I admitted this to his clinical nurse and I never heard anyone laugh so hard.  She said NO ONE convinces HIM of ANYTHING!!!!!!!!!!!"

Would you rather I not provide the reality checks?  I'll go along with you if you want, lol.  I don't mean to make fun.  I know how anxious you are, but you are not also looney!  You're a member of Hypo Gamma Chrondria now, just for asking the question.  Welcome!!  We're having a bonfire on the weekend and roasting weenies, marshmallows and several neurologists.  Wanna come?  Quix

[Super_sally888]

Hi all,

Finally some good news.

Latest test results show the CK-MB enzymes that my doctor was so worried about are coming down (still above range (44 when should be <25), but about 50% reduced).  So maybe whatever it is/was is resolving.

I am hypothyroid and will need to increase my meds (TSH 2.79 (0.47 - 4.64), FT3 0.65 (1.45-3.48), FT4 0.62 (0.71-1.85) .... but that is relatively easy to manage.    

Will see Doc Mike week after next (won't have time on Monday before I head to Hong Kong and Malaysia) when I have all the results (cervical MRI, 5-HIAA) and will discuss all with him then.  Won't change anything till then..

Could somatization disorder be mistaken for MS?  The brain is pretty powerful in what it can make us believe.  Given the neuro stuff, I'm guessing it could?  

S

[Super_sally888]

Yeah, I wish it also weren't heading this way.  

But I have to remember that having this doesn't mean I am going to get disabled.  It will mean I have to work with it.  But I need a diagnosis so I can get treated and also so I can find the best way to manage!

She didn't say anything about the elevated muscle enzymes.  Just commented that those enzymes are normally cardiac and didn't i have that checked?

She was concerned about visual and hearing abnormalities.  She seemed to think the history was indicative.  She just didn't want to say "MS".

Did retest of thyroid and ck enzymes today.  MS could definitely be complicated by other endocrine things....  The possible myopathy could be something completely separate....

thanks

Sally

[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

[Super_sally888]

Thanks Quix and Momzilla,

I don't know what they think....  possibly they don't know what to think.... will wait for the results of testing for carcinoid syndrome.

Just saw my friend who's an MD and accupuncturist.  He thinks I am just using the health stuff as an excuse..... and I've already used it too much...  and I should just do whatever I feel like doing as far as exercise / training and stop dwelling on it all.  Mind you he doesn't know details of the test results & hasn't asked me about symptoms & I couldn't be bothered telling him...  I think best thing is to just follow up the medical stuff but don't say anything to anyone about it unless there is something concrete and indisputable.... and just get on with my life as best as possible.

I am trying to find out if there is any way that that enzyme can be high & rising and there not be a problem....  Am wondering if it could be related to IBD / allergies (apparently this enzyme can be high in traumatic abdominal & GI injury.....)

Apparently it can also be high in hypothyroid.  My thyroid replacement dose is too low at the moment (they cut out the dessicated thyroid and only left the T4, without raising it)..... maybe.... will ask dr. about that....  though these would be weird symptoms for hypothyroid..  and the dose has been cut for too short a time to make such a difference (half life of T4 is weeks).

Exercise wise - at least I can be reassured that my heart is ok!!!!  The rest should be self-limiting.  Unless I hear otherwise from my Dr. Mike I will go do a run tonight on the track oval with my favorite running music, and go bike riding tomorrow. But I will take it easy and enjoy it!  The key to this should be listening to my body.  I train with a heart rate monitor so will detect if anything funny is going on....

Weather here is hot and very humid.  But we get storms nearly every afternoon, which cools things down.  Then the evenings are a bit cooler.  Never gets below about 20 in Manila, and certainly not at this time of year when late 20s and low to mid 30s are the rule (we work in Degree C here).  Nicest time of the year here is Christmas time when temp are low to mid 20's (at night) and high to low 30's during the day and it hardly rains.

Am at work (we work on Saturdays) and have got to get caught up on stuff....  Boss wants a trip to Malaysia next week for a few days and I will go unless Dr. says otherwise (I texted him both about exercise and travel)....

Talking of dogs; I have two.  A mini maltese called Peabo and a Long haired bouncy chihuahua x ???.  They are small and both are white. They hate my two cats: Daisy and Greta.  My sister calls the dogs 'The White Rats'.   Talking of Rats - has anyone seen Ratatouille?  I think I should go see it tonight.

Enough rambling... thanks for your sympathy, support, and ears.....

Anyone have anything good happening this weekend?

Take care all.

Sally

[Quixotic1]

That was NOT the news you were hoping for.  Does anyone think this is a primary muscle disorder?  Is it really okay to continue to do vigorous exercise?  I wish you and all the others were out of limboland - it's getting crowded here.  We're thinking about you a lot.  What's the weather like in the Phillipines?  Hot and humid or is this the better season?  Talk nonsense to us and maybe we can get your mind elsewhere.

You know why a dog has fleas?

To keep his mind off the fact that he's a dog!

Love ya lots, Quix

[Momzilla]

Hi, Sally~

I know that feeling.  It's scary.  I went to the doctor's as you may know, and it was a great experience.  He was unbelievably attentive and thorough.  But I thought for sure he'd take one look at my gait and listen to my symptoms and say, "You have MS.  Here are your prescriptions.  Call me if you have any problems."  He did not.  He does NOT think I have MS.  We still have to figure it out.  I'm scared about what it may be.  (I still think he needs to revisit the MS possibility)  And I feel like time keeps slipping away.

I hope things calm down for you.  Limbo's no fun.  Especially when you're not feeling well.  You keep having to go through so much.  Hang in there.  Feel better!

Chris*

[Super_sally888]

Hi All,

Still here in limbo land.

Got the results back from the repeat CK-MB.  Used a different lab.  Seems the numbers are rising.  First on 23/7 was 3.2 x max level (this was the alarm admission suspecting heart attach), 2nd test last Friday 27/7 was about 3.4 x max level, now (1 week later 3/8)  is 3.66 x max level.  Tremor is still here.  This is not an intention tremor.  Is there at rest.  Seems worse in mornings, a little better as the day wears on.  Patchy burning on legs, arms, back continues.  Flushing also from time to time.  Gonna text my dr. the latest results shortly...  

Muscles feel kinda weak  - like I worked them really hard (although I haven't - have had a really easy week.  Only 2 short easy swims and a short bike and short run).  By now I don't know what is just my overfeeling normal sensations due to all this attention on my health, and what is a symptom.

I was so hoping this last test result at a different lab wouldn't show anything or at least show reducing levels ............ I am so "don't know what to do".....

In meantime I am somehow trying to work and stay a little active and not worry myself too much ......  It's just that not knowing what is wrong means I have no idea of what to expect....

Sally

[Nanners123]

Wow!!! I am exhausted just reading all you have gone through. I am encouraged by your positive attitude and in awe of your energy despite all the symptoms. You are inspiring me to stay strong.

I am at the point of thinking all of these symptoms I am having are in my head and continuing because I am journaling every day what is going on with me in hopes that my neuro at my next appointment can get a better picture. I wonder if I just stop and focus on my life more if the symptoms will fade off into the background.

Anyway, I am glad that you are receiving such comprhensive care from who seem to be very professional docs.

To everone else, just to let you know that I do read forum and though I have not replied in a while to anyone I do keep you all in my prayers.

[Super_sally888]

Sorry am posting here so much recently.... am kind of on a steep slippery slope at the moment and grasping at anything info / proof that will slow down the slide...

Visual stuff.  Was comparing eyes.... seems my left eye has blurry vision. The blurriness comes and goes.   Will try changing my contacts tonight and see..... can't find my glasses recently so can't check against them....

Maybe this is just a somatization response from reading the VEP, but in case I will just pass by the opthamology centre near my office tomorrow morning and ask them to check that things really are ok.  The flashing is ongoing, and vision just a bit weird....  The idea of my vision being impaired scares me very much.... that would really put a damper on a lot of things, and independence...

The burning sensation still here - but back of arm, shoulder, lower legs..... is it really possible for this to seemingly switch around?  To have symptoms when stuff doesn't show on the neuro testing...

I am so distracted at the moment with all this, I am having trouble concentrating on work!!! Somehow have to get a hold on myself and remember that life and its requirements go on regardless of what flashing or burning or other weird sensations I am getting... and I am the only one paying my bills, so I'd better keep on top of it.

S

[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