One Sick Mother

Oslo Health Solutions: Preying On The Sick Part I

Every now-and-again, on a support board or some other website, I will run across a person who is asking about a herbal remedy they found on the Internet. Had we heard of it?  Has anyone tried it? Does it work? What are the side effects? Is the money-back guarantee for real?  Now, it very easy for a well person in the cold light of day to spout hackneyed phrases like "stay away from miracle cures" and "if it sounds too good to be true, it probably is". Those who are well and relatively pain-free don't understand the desperation some of us with chronic conditions (and our families) can go through when faced with an incurable condition and very little help. It is easy for the well to warn that cross-border herbal remedies are not regulated and that we have no clue what we might be getting.

Yes, it is easy to say if you are well.

However,  if you are looking down both barrels of a chronically painful and potentially disabling condition like Syringomyelia, for yourself or your child (or your  mother /aunt /brother /grandchild /father /sister /uncle /niece /nephew... etc) and it is three in the morning and you can't sleep for pain and worry, can't find a specialist who knows about the condition within 300 miles and then maybe some of these solutions may seem like they are worth a try.  How many among us would not spend a hundred dollars to try and help a loved one?   

Sick people and their families can be easy pickings for unscrupulous product developers and sales people.  I remember a couple of years ago, -in Feb '07 actually, I came across a product called Syrotab  mentioned on a message board. The product claimed that  “Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

An admitted bold claim, but they say they can back it up.

If you look at the web site for Syrotab, it looks legit. 

 

The site is slick and professional looking, with a picture of a beauitful but rather vacant-looking bi-racial woman, flanked by a couple of handsome guys in the background; one serious and one trying to look sincere. The site has a short but accurate description of what Syringomyelia entails and then they get to their -self-acknowledged "bold" claims of treatment (not cure!) within a few weeks. They back up these claims with promises of clinical trials and money-back guarantees up the wazoo.

Back in February '07, I did some analysis on Syrotab.  I checked their site to try and find details on their clinical trial results. but the link said it is "coming soon"  For a laugh, I checked again today. Guess what?  It is still  "coming soon"!  Shocker!   Did you ever hear the Jamaican expression "Soon Come" (i.e. never)?   Yep. It's the same deal.

Back in '07, I cut and pasted some text from their website:

“Syrotab is a completely guaranteed and clinically proven herbal treatment for Syringomyelia.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Syringomyelia effectively.

Thousands of patients have been successfully treated with Syrotab over the past few years. Syrotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Syrotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Syrotab tablets are:
Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.
Treatment with Syrotab is very rapid obvious results can be noticed within 40 days of use. A complete course of treatment lasts three months.

Syrotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Syrotab comes for a fixed price of $230 for a one month supply….”  Update: the price is now $79.99.  Bargain!     ...NOT!

I researched some of the ingredients mentioned, which was an education in itself.  I will get into all of that in part two of this piece.

When researching these ingredients, I came across something very interesting.  Amylotab! Here again, was my friend,. the vacant biracial woman.

...and here is the text from the "about Amylotab" page...

 
Amylotab is a completely guaranteed and clinically proven herbal treatment for Cutaneous Amyloidosis.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Cutaneous Amyloidosis effectively.

Thousands of patients have been successfully treated with Amylotab over the past few years. Amylotab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Amylotab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Amylotab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur
Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Amylotab is very rapid obvious results can be noticed within 2 months (60 days) of use. A complete course of treatment lasts four months.

Amylotab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Amylotab comes for a fixed price of $290 for a one month… (now a virtual bargain at $79.99!)

I saw a theme emerging. Something smelled very fishy indeed.  I did some more searching and found  Osteotab

It was probably a mistake on my part. But at that point I left the whole business behind me, thinking it was small scale and well, that it wasn't really my problem. Surely some other people would come along and blow the whistle on these guys?

Then yesterday, when I got started again on the theme of false miracle cures for a completely unrelated reason, I found all these sites still happily operating. I also found this!

 

 

Oh no, they Di-n't!!      (Oh yes. They did!)

...and after that, I went completely mad on Google using all sorts of combinations of keywords and search strings. I hit the motherlode!  I have summarized and collated the data.  The list is at the end of this piece with links and all that good stuff.  If you check it out, you will see the evidence is indisputable: Oslo Health Solutions are total rip-off artists.  What makes me so mad is the scale of the operation, as well as the people targeted. Most of the conditions they claim to "treat" are chronic and incurable. many cause serious pain, disability or death.  Talk about preying on the desperate!

Even worse, some of the conditions they claim to "treat" are progressive, dangerous, cancerous  or pre-cancerous. I don't think anyone would be stupid or desperate enough to try one of these treatments in lieu of real medical help. At least I hope not! But then again, there may be desperate people out there with no insurance, who spend what little money they may have on acquiring false hope.

There are two primary templates used on these sites. The most-used by far is the vacant woman one as show previously.  

However there is another template, even more slick,  which I have dubbed the "laughing couple"  (aren't they lovely?)  template. 

 

Although this site looks completely different to the others mentioned so far, read the text: 

Peritab is a completely guaranteed and clinically proven herbal treatment for Peripheral Neuropathy.

It consists of a formulation consisting of purely natural ingredients based on the Unani (Greek) system of herbal medicine blended together in a specific proportion to fight and treat Peripheral Neuropathy effectively.

Thousands of patients have been successfully treated with Peritab over the past few years. Peritab is a completely outstanding product and there is absolutely no alternative to its unique formula. Had the effectiveness of Peritab not been proven beyond any doubt, it would not be possible for us to make such a bold claim.

The main ingredients of Peritab tablets are:

Magnesium Murakab
Zinc Murakab
Berberis aristate Ext
Egg Shell Calcium
Sulphur Substituted olive Oil

The exact proportion of each ingredient has been deliberately kept secret to avoid imitations of our confidential formula.

Treatment with Peritab is very rapid. Obvious results can be noticed within one month of use. A complete course of treatment lasts two months.

Peritab is taken in an oral pill form and the normal dosage is two tablets twice a day, mornings and evenings. There are absolutely no side effects and the treatment is safe and sold over the counter.

Peritab comes for a fixed price of $180.00 for a two months supply (240 Tablets) and can be ordered from our website. We do not charge any shipping price.

Treatment with Peritab is fully guaranteed. We are so confidant about the effectiveness of Peritab, that in the rare case you remain unsatisfied with the improvement in your condition, you may simply return the empty packaging along with the original receipt and claim a refund of the amount you paid us. The guarantee is valid for 120 days from the date of purchase. Since all payments are made via credit card directly to CCNOW (our credit card processing company), your money is completely safe. CCNOW will ensure that we honor all claims for refund. The only condition is that you have to be persistent in your treatment with Peritab for a complete course of the treatment. Skipping pills or being irregular will only delay the treatment.

If it sounds familiar, it is. It is exactly the same wording as for Syrotab, Amyltab, Osteotab, MD-Tab and several others, right down to the ingredients list. A straight cut-and paste job, with just  product name and pricing changed.

 

Proof of Cut and Paste: Check out the title of this "Thyrotab" about page. They forgot to rename it from "Psoriasis Tab"!

Although there is no company name or address listed on the Peritab site that I could find, the "Order Now" button gives it away

CCNow is an authorized retailer for OSLO HEALTH SOLUTIONS

Bastards.

Just to clarify, I think CCNOW is a legit operation, however they don't issue refunds without their client's approval. Their client is Oslo Health Solutions,-not the consumer.  

Do Oslo Health Solutions back up their promises?  Well, this person will never know. OHS never sent the Ptosotab that was paid for.

 

The next person actually received some bottles of pills (I must admit I was surprised to see this) but returned them and got no refund (quelle surprise!).

 

Another report; -this time for Sarcotab:

But what about the clinical research, I hear you ask?  They say there is some.

I didn't check absolutely every site for clinical research, and most of the ones I did check, had the very familiar "will be posted soon" message.  However, Vitiligo Tab (Vitiligo Tab is our 100% guaranteed and clinically proven permanent cure for Vitiligo.) has a research report attributed to Gaurang Clinic and Center for Ayurvedic research. 

I tried to cross reference this by searching Guarang's own site for the paper -I thought they would have it listed among their 49 other reports, but it wasn't. Curious.

Then I read the report. It seemed a bit low on actual research to my somewhat-trained eyes. There is a of information about Vitiglio itself , and some interesting if rather vague claims made.  But the information on the study itself and the findings thereof seemed somewhat hazy. They look great at first blush, but there were some things that seemed a little ...off.  First off, the study was not double-blind. There was no placebo.

Next, I noticed that the report uses a timeframe of 1996-2001. However, Vitiligo Tab -according to the site copyright- wasn't introduced until 2007. Was it in development for 19 years? (no wonder it is so expensive).  And finally, it doesn't say how the results were measured and over what timeframes.  It used terms like "cured" and "90% Improvement, but does not break it down into the different types or extent of vitiligo, which had been painstakingly outlined in the beginning of the paper. It looks like it does: -uses terms like "both sexes are equally affected by Vitiligo"  but it doesn't say how they genders are affected by Vitiligo Tab!  Hmmmm.  

 Psoriasis Tab was another with a research paper published from the same source (different attributed author) 

 

Again, if you read this paper, it is heavy on waffle and very light on actual research and concrete findings. And again, that paper it is not listed on Guarang's site.

I have mentioned a lot of "tabs" in this post, haven't I?  A lot of products called something-or-other-Tab that claims to treat  well... something-or-other?  Do you want to know how many I found?  Almost 50 (forgot to put clustotab on the list). And I don't think I have found them all. Some have been discontinued (like cardiotab) but have left footprints around the web, showing that they *used* to exist. Oslo Health Solution have around 284 domains registered, so I am guessing there are other um.. products out there that I haven't found yet. Anyhoo,  have a little look at this list. It is in alphabetical order. Check the links and see for yourself if you come to the same conclusion that I did. That these people -Oslo Health Systems (formerly Botanical Sources) are total rip-off artists.

Here it is: The Grand List of Oslo Health System's (and related sites) "completely guaranteed and clinically proven" herbal treatments

Blastotab

Product	Condition	*Formulation #	Price	Duration of supply
Absotab	Skin Abscess	10	$79.99	One month
Amylotab	Cutaneous Amyloidosis.	1	$79.99 (was $290.00)	One month
Anemia Tab	Anemia	Not listed	$89.99	Two month
Archotab	Arachnoid Cysts	2	$79.99	Two month
Ascotab	Ascites	2	$79.99	Two month
Atrophtab	Multiple System Atrophy	2	$79.99	Two month
Ameloblastoma	2	$79.99	Two month
Chordotab	Chordoma	2	$79.99	Two month
Clearotab	Dark Circles and Bags Under Eyes	1	$79.99	One month
Cronkatab	Cronkhite-Canada Syndrome	2	$79.99	Two month
dentotab	Teething!	2	$79.99	Two month
Emphotab	Emphysema	6	$79.99	Two month
Fascitab	Muscular Fasciculation	2	$79.99	Two month
Guillatab	Guillain-Barre Syndrome	1	$79.99	One month
Hornotab	Horner's Syndrome	2	$79.99	Two month
Lennotab	Lenox Gastaut Syndrome	2	$79.99	Two month
Leukotab	Leukemia	13	$79.99	One month
MD Tab	Muscular Dystrophy	1	$79.99	One month
meglatab	Megaloblastic Anemia	2	$79.99	Two month
MG Tab	Myasthenia Gravis.	8	$59.99	Two month
Myeloditab	Myelodysplastic Syndromes	2	$79.99	Two month
Osteotab	osteomyelitis	1	$180	Two month
Parkotab	Parkinson's disease	5	$79.99	Two month
Peniatab	Idiopathic Thrombocytopenic Purpura	3	$160.00	Two month
peptotab	Peptic Ulcer Disease	4	$180.00	Two month
Periotab	Periodontitis	10	$160.00	One month
Peritab	Peripheral Neuropathy.	1	$180	Two Months
Picknotab	Pick's Disease	11	$230.00	One month
pp-tab	Post-polio syndrome	1	$79.99	One month
prismatab	Benign Essential Blepharospasm	2	$79.99	Two month
Pseudotab	Pseudotumor Cerebri	2	$79.99	Two month
Psoriasis tab	Psoriasis	Not listed	$139.99	Six week
Ptosotab	Ptosis of Eyelid	9	$79.99	One month
Raynotab	Raynaud's Disease	1	$79.99	One month
Sarcotab	Soft Tissue Sarcomas	5	$79.99	One month
Sclerotab	Scleroderma	1	$79.99	One month
Sightotab	Age-related Macular Degeneration	9	$79.99	One month
Syrotab	Syringomyelia	1	Now $79.95 (was $230.00)	One month
Thyrotab	Thyroid Nodules	7	$79.99	Two month
Ticknotab	Tick Bite (?)	12	$190.00	Two month
Tonsotab	Enlarged Tonsils	2	$79.99	Two month
Tortitab	Spasmodic Torticollis	2	$79.99	Two month
Trematab	Benign Essential Tremor	2	$79.99	Two month
Vertigo Tab	Vertigo	Not Listed	$49.00	One Month
Vitiligo Tab	Vitiligo	Not Listed
welnatab	Kugelberg-Welander disease (SMA Type III)	2	$79.99	Two month
Wiskotab	Wiskott Aldrich Syndrome	2	$79.99	Two month

*I have figured out that Oslo Health Solutions and their affiliates use around 13 different formulations to "treat"  over 60 different diverse ailments. I will discuss these in Part II.

Stay tuned.

Rules, Damn Rules and Statistics

I have been thinking about rules a lot recently. I live in a house with two ASD kids, so rules are a big part of my home life. Here are examples of some of the more colorful rules we have had in the past:

• We keep our shoes and clothes on in restaurants.

• No rocks in the house

• We don't growl at friends (or at anybody).

• We don't lick Mom

• No sniffing the Dominos man (it really freaks him out!)

• No feet on the dog

• We wear clothes and shoes when we go outside.

Most rules are good. Most rules are sensible and designed to help in some way. We don't put our feet on the dog or he might bite us. We wear shoes and clothes outside so we don't freeze to death, don't cut our feet and don't freak out the neighbors. Rules created with thought and purpose are good.

In diagnostic medicine there are a lot of good commonsense Rules. If a person arrives into the ER complaining that their knees hurt, there is no point in giving them a chest x-ray.  You know, stuff like that.

Damn Rules, however are another story. Damn rules are arbitrary and seem to have little logic or purpose. Damn Rules are rampant in diagnostic medicine.

I remember when Grace was about 9 months old, I took her to the doctor.  She was vomiting with a fever. It was my second trip to the pediatrician's that week. I had been there a few days earlier with a feverish, vomiting Joe, who was about 2½ at the time. They had tested Joe for Strep, it was positive. Antibiotics. Done.

I figured it was only a matter of time before Grace got Strep too -those guys were complete germ factories. So as soon as she threw up, I took her to the pediatrician's office.

The Pediatrician walked in to see Grace.  "What's the problem?" he asked before he was through the door.

"She has a fever and she vomited. Her brother has strep, so I thou..." He interrupted me quite brusquely "It's not strep" he said in a very finite way.  He had barely looked at her, hadn't laid a hand on her. What is this? I thought to myself Psychic Medicine?
"How do you know?" I asked, agog.
"Babies under one don't get Strep." he said, dismissively.  "It's probably a virus"
"...But  ....but her brother has Strep and she has the exact same symptoms."
"It doesn't matter. Babies under one don't get strep"

He started to examine Grace, while I pondered this statement. Finally I asked a question that was bothering me.
"How does the strep know?"
He was confused: "What?"
"How does the streptococcus bacteria know how old she is?  How does it test her age (and why does it care)?"  How can it tell the difference between an 11 month old  baby and a 12 month old one?

He looked at me for a minute. spluttered, stopped, looked at the child then asked "what does she weigh?" I told him.  He muttered something very grudging about being big for her age and tested her for Strep. And what do you know? It was positive!  He acted AMAZED.  "But babies under one don't get Strep!"  I struggled not to shout at him.

And afterwards I thought and thought about this and I figured maybe that Damn Rule  was almost true 50 or 100 years ago, when kids were smaller and less well nourished, but not today.

When I took Grace for her follow-up to be sure the Strep was gone, I saw a different doc in the practice.  "Oh! She had strep? and she is  ...what?  ...9 months old?  Wow! I wouldn't even have tested her! Babies under one don't get Strep, you know...". I indicated Grace with a flourish of my hypermobile wrist: "Exhibit A" I said with heavy irony

I think she missed the irony.

You know, it's funny, I never read the paper about the stunning case of Grace-the-nine-month-old-baby-with-Strep in any of the on-line research I have done over the years. 

Sorry. That irony just keeps coming back.

There are many rules like that in medicine. Rules which rely on arbitrary formulas and measurements without looking at changes in the trends or other factors. -Damn Rules, as I like to call them.  In our example, Grace had a sibling with Strep (which is highly contagious) and had the exact same symptoms, but these factors  were completely ignored in favor of a Damn Rule with no real logic behind it. It wasn't until I went all Mr Spock on the guy and challenged the logic that she was tested (but I am sure many mothers would not have dared to challenge the doctor, which thought scares me). I still don't know how the Streptococcus bacteria knows the weight of the child, BTW  -or why it cares!

There are many examples of Damn Rules in medicine, and I have seen many people refused treatment -i.e. hurt because of these Damn Rules (hello Hippocratic Oath?). 

Some of the Damn Rules I have encountered recently:

• A brain herniation of <5mm is not a Chiari Malformation (regardless of symptoms)
• A Small syrinx does not cause symptoms (said to a blatantly symptomatic person with a small syrinx)
  And my personal favorite:
• He makes eye contact, so he cannot be on the Autistic Spectrum.

In addition to -and conjunction with- Damn Rules, Statistics is another diagnostic tool which has absolutely no bearing on symptoms or circumstance and yet, like Damn Rules, Statistics are often taken into account and indeed used to rule stuff out before symptoms or circumstance are considered.

How many times have I been told that I can't have an illness -say Ehlers-Danlos Syndrome, because it is "rare"?  There seems to be some kind of blinders set up in the medical world, some unwritten Damn Rules that go along with Statistics. I think they read something like this:

• "Rare" is actually another word for "mythical" or "non-existent"
• Even if it exists, I, Dr. OfSickMother cannot possibly have a patient with a rare disease in my care because:

• Nothing interesting ever happens to me
• It is too scary a prospect for me to handle

The problems with this thinking -with using Statistics as a diagnostic tool at all; is that it becomes self-perpetuating. So-called "rare" disease and conditions remain undiagnosed or labeled psychosomatic because they are "rare". This causes the incidence rate for psychosomatic illness to rise in the Statistics because so many people with "rare" illnesses end up in that bin. With the rise of these (usually unqualified) psychological diagnoses in the statistics, the relative incidence of real "rare" diseases fall...  Rinse and repeat.

It's enough to make me sick. 

Oops. Too late!

Pushing Boundaries

This is  phrase you hear a lot as a parent: "Oh he's just pushing boundaries. He is trying to see what he can get away with".  And often it is true. But sometimes it is something else. Like Autism.

This is not a parenting post. This is a me post.  Again. Sorry, but it's my blog and I'll self-indulge if I want to.

So yeah. I started this Florinef thing less than a week ago in an attempt to address me low aldosterone issue. Florinef is basically a synthetic form of the hormone, so it should be the right tool for the job, right?  I thought so too.

But I have been very up-and-down since starting this medication. Now, it's not all the Florinef's fault. Mostly it is my own fault. First off, me and my short-term memory screwed up.  I was told to start on a half a pill taken in the morning, and I started on one pill taken at night (Why I don't write this stuff down is beyond me. OK I expected it to be on the pill bottle and it wasn't. Lesson learned.)  Ugh! Can you say INSOMNIA? And thirst? And a few other things (headache)?  So I called the doc and got that sorted out. I waited 36 hours between doses and took a half a pill in the morning. I was OK. However, the NEXT morning (yesterday) I was very NOT OK.  Very, very not OK.  As in almost went to the ER not OK. And that lasted pretty much all day.

I think this stuff has a long half-life. 

And now -per doctor's orders- I am up to a full pill in the morning. I guess I should wait till tomorrow to see how I feel on that.

Yes, I should wait.

But I didn't wait.  I was pushing boundaries today; -even after the day I had yesterday. I ate breakfast just to see what would happen. Would I have a seizure? Woudl I fall asleep uncontrollably?

Now, yesterday I ate breakfast and was effectively felled for the rest of the day. And it is the definition of madness to do the same thing and expect  a different result, right? But I did it anyway and GOT a different result. I ate breakfast and I felt OK. Result!

And if that weren't enough, I decided to push ANOTHER boundary. I ate lunch. I was a little thirsty (very thirsty is much more common), a little salt-cravy, but nothing major. No seizure.

Wow.

I realized I was really pushing my luck so I stopped experimenting for today.

And then I got to thinking about pushing boundaries: When you are sick, you push boundaries all the time. Every day, you push to see if you can still do X or still not do Y. And if you find it s a "good" day and you can maybe do both X and Y, you don't settle for that. You push harder. You go for the next thing (which I assume is Z!), trying to find the limitations of your limitations for that day, because they often change. And that's one of the most frustrating things about this whole illness business:

The inconsistency.

Because if every day was a known quantity, like it usually is for unsick people, you can plan. You will know the parameters to set, and you can go with those.

...and just realized I have just come full circle back to my "commitments" post.

Time to stop!

OSM's Medical Advocacy Lesson 1

I promised an advocacy post, and this is the first installment. Please note that a lot of my experience relates to dealing with private health insurance in the United States. However, I think some of the concepts can be applied elsewhere.

The first thing you have to understand when trying to get a diagnosis or help for yourself, a dependent or a loved one, is to realize who ultimately owns responsibility for your health?

You do.

It is not your doctor's job to make you well. Indeed, in some cases it may not be in your doctor's interest to make you well; if he/she is making money by you being sick. And doctors do not all have a legal, ethical or moral obligation to treat you or make you well. The Hippocratic oath is not taken in many medical schools these days.

Now, Don't get me wrong: There are many great and dedicated doctors out there who will fight tooth and nail for their patients. There are many who will go above and beyond the call of duty. However, It would be a mistake for you (or anyone) to assume that your doctor is one of these fighters until he or she proves otherwise. And even then, you can't assume this dedication will continue. Doctors are people too, and subject to all the same fallibility as the rest of us.

So the only person who really has the responsibility to fix you is you. This is the first fundamental truth a patient needs to understand when seeking medical help. Once you make this leap of logic, a lot of the other stuff I will say is just common sense.

So how do you take ownership of your own case?  I hear a lot of people shaking their heard or panicking at this point.

The second rule is "Don't panic." This is a big undertaking. Take things one step at a time and remain in control.

The first practical step you need to take when managing your own case is get all you medical records as far back as you can go, including blood-work, images (MRI, X-ray CT, etc etc), office and consultant notes (the last two are the trickiest to get). In the United States a person is entitled by law to have copies of their medical records. I know in the UK some agencies have started sending copies of reports to patients as well.

Acquire records on an ongoing basis as they occur. If you have blood-work taken at a lab, ask the lab to send you a copy when they send the results to your doctor. The same for any imaging or other tests.

Read the notes and tests, and educate yourself on what is going on in your body, and ask your doctor questions about anything you don't understand on the tests.   I learned this lesson the hard way: A few years ago, I noticed something called "MCV" on a blood test was out  of range. My doctor had never mentioned it. However I was curious and I looked it up on-line. The number meant my blood cells were a little too large: Not a problem, right?  I didn't mention it to my doctor. Big blood cells just mean more oxygen, right?  WRONG! Apparently, large blood cells don't carry oxygen too well. And an elevated MCV number is an indicator of B12 deficiency. But the doctor apparently missed it on the report, and I never asked him about it. My B12 deficiency was not discovered until about three years later by another doctor. I started taking supplements and felt a lot better immediately. Stupid me!  That improvement could have happened three years earlier had I been less shy about "bothering" the doctor.

So ask questions about about test results and stuff on reports. it is perfectly fine to say something like  "this report says I have an "asymptomatic"  tarlov cyst. However the radiologist never asked me if I can feel my foot: I can't.  Could the Tarlov cyst be causing this?"

Even if all reports are normal, know what and when your normal is. Because rest results may change, and it won't be your doctor who will remember if X, Y, or Z was different two years ago. it will be up to you.

Once you have your medical records or test results, make sure all of your doctors get a copy. This may involve a lot of copying or mailing/faxing, but it ensures that there are more than one set of medically qualified eyes on your records and test results. One doctor may get an idea or a realization by reading test results ordered by a different doctor. It also saves you undergoing the same test multiple times.

So to summarize lesson one:

1. Own responsibility for your own health care
2. Don't panic and work methodically
3. Get copies of your medical records and ask questions about anything you don't understand.
4. Share medical records and test results with all of your doctors, not just the ordering doc and the PCP.

That probably enough to be going along with for now. Especially as my hands are killing me!

Be well.

Driving The Bus

One of the most relevant questions a doctor ever asked me, -and it was relatively early in this whole process- was this:  "Who do you want to drive this bus? Me or Dr. #6?". By that question, he meant who was in charge of the decisions regarding my seizures and (I guess) health in general.  I chose Dr #6. I chose poorly.

In truth, Dr #6 was never driving the bus. She did all in her power to NOT drive it. Looking back on it all;  I was driving the bus. With one hand and a dodgy leg. In the dark.  With Dr #6 periodically jerking the wheel and steering me into other doctor's driveways

No wonder we have been going around in circles.

Since ditching #6, I have been driving the bus alone, with #25 shouting directions in my ear (and the rheumy, grim and pursed-lipped, a white-knuckled passenger in the back).

In all seriousness though, The "bus driver" question is a very relevant one for anyone with a chronic health condition or indeed for anyone  with a child who has a health condition or a disability.  Theoretically, one's PCP should drive the bus. The PCP, should hold all the threads, do the referrals, collaborate the data coming back, make sense of it, and then make recommendations.  But in this day-and age, most don't do all that. In a complicated case, they can't! They are so underpaid by the insurance companies, the only way to make a living is to see more patients in a shorter period of time. So forget all this management of complicated cases. It is a lot of hassle for absolutely no gain for someone already pressed for time.

So the PCP usually can't drive the bus. The best he might do park the bus somewhere and read the paper.  If nudged by the patient, he may write a referral to a specialist. Which in keeping with this analogy, is like giving the patient a transfer to a crosstown bus (one way).

Therefore I have had to drive my own bus.(and my kids' buses).I don't excel at this by any means. Especially as I deal with a lot of specialists. But I have learned quite a bit and I continue to learn. Maybe soon I get this bus to where we need to be.

In one piece.

Four Eyes Come Full Circle

A friend reminded me to update you guy on my daughter's situation.  You remember last Friday I took her to the ER because she had double vision for over 3  hours?

Well, on Monday I yanked her out of school early for an emergency ophthalmologist appointment.  She had only been there a month ago but they still gave her a very comprehensive work-up, particularly checking her tracking and how her eyes worked in sync (or not).

At the end of the appointment, the doc tell me that he is pretty sure it is a problem of low tone in her eye muscles. He said that her eyes sometimes diverge to work as two individual units instead of a whole. if she is tired, she probably cannot get them to converge again. He thinks eyestrain may be a contributing factor. She needed glasses last month -was just on the border for needing a prescription, but her regular eye doctor had wanted to hold off until after the summer recess. Well, we are holding off no longer. Right after the appointment, we went to the optometrist with our shiny new prescription and picked out frames.  We picked up up her new glasses yesterday.

She is delighted to finally be wearing glasses. I heard her telling one of her friends. "Next, I'm going to get braces!"   Quoi?  How strange is that kid?  What child *wants* braces and glasses? Has 'Ugly Betty' become such a cultural icon that 8yo girls are feigning squints and overbites? I could probably go back to the ICD-6 and find a suitable diagnosis for this behavior; Maybe "Hero Worship", "Mental" or "Away With The Fairies" is in there. I never thought to check.

Now if I were a good sick mother, I would have thought to take a photograph of my darling in her new glasses to post here, before she took off on her sleepover playdate. But I'm not.  I may get one and slot it in later.

But I thought glasses was fitting end to the double vision saga, which started with the statement "you have four eyes" Because now I can retort "No, I don't. But you do!" 

(Yes: Underneath it all,  I am actually 12 years old...)

The View From The Door.

Friday nights are busy for us. We eat pizza (pizza on Fridays appears to be the law around here), come home, the kids get changed into their Judo gear and we go to their Judo class.

So I am standing at the front door, holding it open with one hand, herding one kid out, and calling back to the other kid to hurry, when kid #1 looks up into my face, laughs and says "You look funny. You have four eyes".

Now if I wore glasses, I would not think twice of this remark, but I don't. "Four eyes?" I asked. "Really?" She laughed. "Yes!"

"How many heads do I have?"
"Two"
I held up two fingers. "How many fingers?"
"Four"
I stood back. "how many moms?"
"Two"

(Shit.)

Double vision in an eight-year old is not a good thing. I asked her when it had started and she told me it had started at school during gym class.
"What time is gym?"
"2:15". 
I looked at my watch: 5:17. So the kid had had double vision for three hours and not told anyone!  I instantly revised my plans and instead of going to the pizzeria, we went straight to the urgent care pediatrician.  I don't take chances with stuff like that. Forget 'wait and see'. We can 'wait and see' in the doctor's office where there are licensed professionals at hand should the view prove not to our liking.

The pediatrician wouldn't even see her. They told me she needed a CT scan and sent me straight to the Children's hospital. In Friday rush-hour traffic in the teeming rain.  Without dinner.  It was just me and the two kids so I had to take them both. I half expected Joe to melt, but he took the change in plans very well. I guess he understands that I only go to the hospital if needed.

Halfway to the hospital she tells me her vision is OK again.  I did wonder if I should turn around, get pizza and go to Judo, We would have made it. But then I thought I would never forgive myself if it did turn out to be something serious. And Judo probably isn't the prescribed treatment for an unknown neurological  or eye problem. That last part was just a hunch of mine, but I decided to go with it. I took her to the ER.

We were attended pretty quickly, even though by now my kid was fine and engaged in a spirited game of "hand spiders" with her mom (Joe had found a snack machine and The Cartoon Network on a TV and was happy).

Long story short: We were there for several hours. She aced all the neurological exams. They decided not to CT scan her for now and we have to follow up with her pediatrician and the pediatric ophthalmologist. She just saw him last month, but oh well...

So I was driving home and stressing. What if she needs glasses? Our vision coverage is crappy. Joe just got brand-new glasses last month. Within two weeks he had lost them.   They were lost lost. I had turned the house up-side down, had called the school, the community center, the pool, the bus company, the neighbors. Everyone. Those glasses had not shown up. I had resigned myself to buying him another pair. And now I am thinking what if *she* needs glasses too? Where will the money come from?  I had known she might need glasses in six months... But that was OK. If the kids' ophthalmologist appointments are six months apart, that is one pair of glasses every six months instead of two pairs every twelve months. That is easier to do.  But now I might be looking at buying three pairs in two months, and that is not very do-able at all right now. <...sigh>

At bedtime, I was trying to contain an overstimulated Joe, who was quite delighted to be going to bed at 10:45pm (although he reminded me that if you don't account for daylight Savings Time, it is only 9:45pm. I assured him; yes. this is a new record). I ended up in an unfamiliar location; standing in his room, at the door, calling for him to come to me. While I was waiting, I happened to glance to my right. I glanced again: There, on top of a battleship game, which had somehow gotten itself trapped behind the door, were Joe's new glasses.

At last something good has come of this day.

I'm going to bed quick before something else happens. I want to finish the day on a high note. 

For once.