Questions - a month later after the diagnosis

[scared341]

Dear all,
Thank you for all your replies!

I am posting again about the MS experience with my son. Up to a month ago he was perfectly healthy and athletic 32 years old man.  Then he started limping for no apparent reason and 3 days later he was not able to walk. His family physician sent him to ER and in two days he was diagnosed with MS.   In a week he was up again and back to work. Now, after the initial shock, I look back at the events with a lot of fear.

In the ER my son was subjected to 4 CT scan: this put him at radiation levels comparable to those experienced by survivors of Hiroshima. Was my son unnecessarily put at high lifetime risk of developing cancer?

One of the hospita’sl neurologist recommended 3 days of 1000 mg solumedrol.  My son agreed. The effect was good and he was able to walk in 3 days. Then a second neurologist showed up and mindlessly increased the treatment to 5 days. This was contrary to all recommendations, stating that steroids should be stopped with the first signs of improvement. The effect of the additional 2 days dose was only negative: overdose that poisoned his body.  A month later after the steroid my son feels pressure in the area of the liver, excessive thirst.  Did the overdose of Solumedrol caused damages to the hypothalamus and the  liver, did it put him in a risk of diabetes?

Is the combination of C , gadolinium- based contrast for MRI and Solumedrol going to ruin his kidneys along with the above mentioned concerns?

In the process, no doctor warned us of the potential risks.

In summary, I fear the doctors in the hospital created more damages than the actual disease.  I am praying that all of the above will not affect my son’s abilities to continue doing his highly intellectual work…

[COBOB]

So many people have tried to help and support you.  I'm sure the ER personnel were concerned for your sons health.  You will choose to "believe what you believe."  Your belief that IVSM should be stopped on improvement is something even doctors don't agree on.   As far as your son's kidneys, most people with normal kidney function never have any issue excreting GAD.  

I hope anybody else reading this diatribe will do their own research, discuss things with their health care provider and make balanced decisions.  I still find your claims and statements on your son's behalf to be alarmist.  He is 32 and he had the right to say "No", "Stop" or ask questions anywhere along the way.   From 18 on, he has the right to ask for your input, but he is an adult.  He has the right to control his own care decisions.  The fact that you choose to use this forum to second guess, in hindsight, the medical care decisions your son made with his doctors, at the time of his acute illness, boggles my mind.  If it was malpractice, let him go do something about it.  Venting part of the story (your part), out of context, and as a third party (hearsay) makes your claims and assertions a specious argument.

My opinion,

Bob

[doublevision1]

I just read Karens post and have to agree - it seems you did fail to thank all those who responded to you in what sounds like your darkest hour.   Understandably you were and are scared and worried for your sons health, well-being and future.  But it is still a little surprising to me that you failed to recognize the support, encouragement and empathy that was extended to you at that time.  I say this regardless of whether or not you agree with the sound advice that was promptly and generously offered by many with lots of experience on the subjects at hand.

You asked “How I can ever be at peace knowing that I could have saved my son from unnecessary long lasting harm by simply supporting him to refuse most of the “care” in the ER / hospital!“  

I don't know how you can ever be at peace with this.  I guess you never will be, which is unfortunate for you.  Though you could try focusing on what needs to be done now and in the future, rather than that which is already done.

[doublevision1]

Could you please provide references for the literature you cite that indicates that steroids should be discontinued at the first signs of improvement, specifically IV methylprednisolone for the treatment of multiple sclerosis exacerbations.

[scared341]

I agree, people need to be informed in an intelligent way so they can make the correct decisions and not get scared.

The radiation  limit is maximum 5 REM/YR provided that the dose do not exceed 10 REM over 5 YEARS period.

This is what is written in the standard in the link above.

Thank you, Bob!

[COBOB]

I know you don't want comments, but the people reading this thread need to know that in that one set of exams, your son received  less that one-half of the year occupational limit.

The US Federal Limit for Medical Personnel (and other occupational workers) working with X-ray is 5 REM/YR so we can put that number in perspective.  Sorry your son got half that dose in one sitting, but again, the doctor must have felt that the need exceeded the risk.  If you feel that there was malpractice, go find a lawyer.   .

If you have followed this forum, you will see time and time again that we tell people CAT Scan is a useless imaging modality of MS.  MRI generates a much lower dose of non-ionizing radiation.  All electromagnetic devices: MRI, the sun, an electric blanket, radio transmitters, light bulbs, computers,  etc. generate non-ionizing radiation.  

This forum is here to inform people, not scare them.  

Bob

[scared341]

Yes, here is the real picture. The ER gave me the report of the estimated CT doses for the actual scans performed on my son.  The method used – Huda et al. (2008):

CT Brain scan – 1.81 mSv

CT Lumbar spine – 10.1 mSv  (1.0 rem)

CT Thoracic Spine – 12.5 mSv (1.25 rem)

The total effective dose to the patient – 24.42 mSv (2.44 rem)

/in my previous post -1248.59 mGy-cm is the total of L-spine and T-spine scans -  recorded twice. It should be used just once/

http://hps.org/publicinformation/ate/q8900.html

International Commission on Radiological Protection (ICRP) radiation dose limit for occupational radiation worker - 20 mSv/year

ICRP limit for a member of the public of 1 mSv/year

I do not wish to add any new comments to the above.

[COBOB]

Talked with some folks at GE Medical Imaging, and they stated  that a  head CT without and with contrast is about 4mSv (due to large MAS values and small slice thickness) and a T-spine CT is about 0.7mSv.   So three complete head and T-spine CT should result in a total estimated dose of about 14 mSv.

This is about 10 years of background dose at sea level or a little over 3 years background dose in Denver.  It is also significantly less than a single GA-67 Gallium Citrate Nuclear Medicine study for tumors or infection.  A single GA-67 study would generate an exposure of 18.5 mSv.  

Bob

[COBOB]

I think there is an error in your calculations.  According to the FDA Center for Diagnostic and Radiologic Heath (FDA-CDRH), 1 mSv = 1 mGy in the case of x rays.)

A CT examination with an effective dose of 10 millisieverts may be associated with an increase in the possibility of fatal cancer of approximately 1 chance in 2000. This increase in the possibility of a fatal cancer from radiation can be compared to the natural incidence of fatal cancer in the U.S. population, about 1 chance in 5. In other words, for any one person the risk of radiation-induced cancer is much smaller than the natural risk of cancer.

Your previous references to Hiroshima are inaccurate in that most of the damage was caused by Ionizing Radiation and X-ray is non-ionizing.

CT of the abdomen has about the highest exposure.  It is about 32 mSv for a study.


Here are a few sights that one the the physics people recommended.

http://www.fda.gov/Radiation-EmittingProducts/RadiationEmittingProductsandProcedures/MedicalImaging/MedicalX-Rays/ucm115329.htm


http://www.radiologyinfo.org/en/safety/index.cfm?pg=sfty_xray

[scared341]

Thank you again COBOB

It looks like these are the methods for callculating:


http://answers.google.com/answers/threadview/id/742075.html

http://bjr.birjournals.org/cgi/reprint/70/832/367

Assuming the coefficients are the correct one, the brain scan for my  son should be:

787.72 mGy-cm x 0.62 x 10^-2 mSv/(mGy-cm) = 4.88 mSv
(the potentialerror here is on the order of 10%?)

I can not find the coefficient for the thoracic spine.  Assuming it is 1.90, the same as the neck, then the calculation is:

1248.59 mGy-cm x  1.90x10^-2 mSv/(mGy-cm) = 23.72mSv

For unknown reason, the  thoracic spine scans were two.

It brings the total dose (within an hour)  to:

4.88 mSv + 23.72mSv + 23.72mSv = 52.23 mSv

52.23/1.5 = 34.8 years of exposure (he has lived 32 years so far)

Is this correct? Or the coefficient for thoracic spine is different?  

[sllowe]

I 2nd Julie, thank you! And, thanks to all who have put so much solid information and clarity and support in responses to this.

-shell

[Sumanadevii]

Perhaps a reread?  There were no personal attacks.  

[Sumanadevii]

Thank you!!!!  I agree 100%!!!!!!

[supermum_ms]

Well said Julie!!!

[jujuminx]

Bob-
I just wanted to say what a stand up guy I think you are. There is something really beautiful about people like you in this forum who continually help people who sometimes forget that the people answering most often actually have MS and are struggling with all that that brings.
Unpaid, and certainly underappreciated, your time is giving freely to educate and bring some clarity to this disease.  Everything that is offered here is done uniquely and individually based on the initial posters fears, needs and attitude.  We all respond, almost like a family does. There are the nurturers, the professors, the dr's, the emotional ones, the grumpy ones, etc.  
Everyone though offers something that is just theirs, that almost all the time is valuable to someone reading it.  The suffering, the victories, the personal knowledge that we all experience with this disease and shared in this forum is communally shared so that others can learn and we can learn from each other.
Anyway, thank you for all that you offered on this thread and on the many others you respond to.  I was greatly appreciated by me.

Julie

[COBOB]

That last comment on my part was uncalled for.  Rough day at work.  I'm sure you are concerned about your son, but I've lived in Colorado for 10 years, so my addidional backgrind dose in 15 mSv which is more than you would get in 3 dual pass scans with and without contrast.  His risk of being in a motor vehicle accident is much higher than the risk of cancer from such a low biologic dose.

So I hope I can help put your mind at ease on the x-ray exposure.

Bob

[COBOB]

OK.  On modern CT equipment,  a CT of the brain without and with contrast will result in an exposure of 4 mSv (millisievert) which is a biological dose.  It is equivalent to 16 months of background radiation at sea level.  The average American is exposed to 1.5 mSv per year from background radiation.   Where I live on the plains of Colorado at 5100 Feet (AMSL), I receive an additional 1.5 mSv per year compared to a person at sea level.

mGy/CM is a DLP (Dose Length Product) that mean very little in terms of a biological dose compared to a norm.  If you would like, I can refer you to some biophysicists that work in Medical Imaging at UCSF that can validate this data.

Thanks for playing

Bob

[scared341]

How much in regards to the lifetime levels limit of radiation is the total CT scan radiation of DLP 3284.9 mGy-cm.?  /DLP 3284.9 mGy-cm is the total of the 3 scans/

I would appreciate very much if I could receive a direct answer in numbers. Such answer could put me at ease.  

The rest: qualifications, assumptions, judgments, accusations, and personal attacks have no bearing.

Thank you in advance.

[HVAC]

Yes all treatments and tests have risks. Neurologists go by the benefit/risk ratio. They try to do nothing which has a higher risk than benefit. Each of us talks it out  with our Specialists and makes our own decisions.

Unfortunately this is not your MS it is your sons. You are scared and trying to take control of the steering wheel but that is never a good idea when you are in the passenger seat. You can wreck the car that way. Be supportive, be caring, give suggestions, but don't try to drive reach over your son for the wheel while he is driving.

The National MS Society has a lot of non biased information on MS. They do not advocate any treatment over another. They were set up after WW II to bring together scientific knowledge about MS.

Alex

[essdipity]

Scared, if you want to hold such invalid and inaccurate beliefs, that is your right. You have (many times above) been given the facts about MS, steroids, etc., and it is clear you reject all of them. So I agree---why continue to post? You won't convince anyone here, and we certainly have had no effect on you.

You cite quite a few web sources for your very dubious assumptions, as if these sites represent scientifically valid information. But I want to remind you and anyone else who has read this far that the Internet is fair game for anyone at all to promulgate anything at all. Who are these people anyway, and what axes do they have to grind?

Why are such weird sources so often portrayed as revealing the REAL truth that mainstream society has a vested interest in hiding? Is the entire world ruthless and greedy? I hardly think so. And why is a person who falls for one twisted piece of 'logic' so often convinced by many others of similar ilk? Paranoia runs rampant when it runs at all. I'm betting that for any strange idea I could devise on my own, I could find some Internet source blaring that 'truth' to the world.

I too have never before posted here in such strong terms. I have so much regard for the forum and such gratitude to its members that I never want to upset the apple cart in any way, and that remains true. But here I have to add my strong voice to those of many others who say 'What bunk."

ess

[COBOB]

It is not valid to explain your son's improvement from something like diet, that have not been shown to be beneficial to large cohorts of MS patients in double blinded sham controlled clinical studies.  I'm glad your son is better, but the studies say that this will not hold true for a majority of  PwMS.  You assign cause to diet  Not a very controlled study .

As far as the dangers of high energy non-ionizing radiation, I feel I am well qualified to address(12 years as a biomedical engineering tech.)  No one should be exposed to x-ray unless there is a diagnostic benefit over the risk of the disease process.  Period. Since the newer CT scanners acquire 12 slices per rotation, the actual exposure is much lower than on the older scanners.  Most abdominal scans are less than a 2-view chest x-ray.  The scanners at the airport (which are x-rays without a prescription or FDA monitoring) are far more  dangerous than a CT scan.  Rather than passing though the body like high energy x-ray, these Compton Scatter units(`25KvP) generate low energy that are absorbed by the cells of the body damaging DNA bonds.

The assumption is that doctors should use all drugs in a responsible fashion (including corticosteroids.)  It is up to the doctor and patient to determine that.   For many of us it works fine and has minimal side effects.  Some people are hypersensitive to some medications.  If you allow someone to give you a drug you do not understand , you better hope they really believe that part about "do no harm."  If you believe everything you read on the internet, "I have a friend in Nigeria with a check and if you wire him money...."  Only believe what you can see and only half of that.

Well I understand your concerns and your wish for CCSVI and the liberation "magic pill," the current studies are having major issues even selecting the correct patients for the procedure.  There has been at least one death and several injuries associated with the liberation treatment.  It is the cutting edge and by that definition  is fringe medicine.  It requires more designed research for efficacy and less anecdotal evangelism by people that can't understand why a double blinded sham controlled study is needed.  

You changed your sons diet, your test is "open label." Where is the sham control?  I can show you several double blinded sham controlled studies on the DMDs  approved by the FDA.

I find several of comments without a factual scientific or medical basis.  Quoting patient injuries in hospitals (1 in 6) out of context is a good example.  The most common hospital acquired injury is a fall.

Your paranoia about drug companies and the medical establishment is more than questionable.   I think many of your assumptions and loosely  coupled internet citations are pretty much alarmist and lack scientific veracity.

The above is my opinion.  I don't expect you to change your mind and I wouldn't try.  I do expect that this comment will allow someone that reads your opinion to read mine.  They can make up their own minds as to which makes greater sense to them..

Bob

[scared341]

Yes, jujuminx, my last post is update and frustration.
Frustration about unnecessary harm inflicted by radiation and drug overdose. (quite different from “anger towards a medical community that cannot cure him”).  As you pointed, RRMS by its very nature, it remits and relapses. Overdose with a costly drug, in my mind, makes sense only from a business point of view.
In regards to the levels of CT scans and Hiroshima, there are many links that you, Karen99, may be able to google. Here are two examples:
http://jetlib.com/news/tag/hiroshima-and-nagasaki/
http://www.masternewmedia.org/news/2004/11/27/holy_hiroshima_doctors_weapon_of.htm
Thank you for becoming very personal instead of quantifying the radiation levels and providing numbers that could show different picture to a worried person.
And how, for God's sake, you could label someone “transparent CCSVI mole” just from briefly mentioning the procedure?
Thank you again for the replays.

[Karen99]

There is one thing you forgot to say after your initial post almost 7 months ago.  And that is 'thank you for taking the time to post in response to my concerns/questions.'  

I read the link you included and there is NOTHING in it to compare it to Hiroshima.  In fact, often, as the doctor states in that article, the benefits outweigh the risks.  I would guess the doctors did multiple CT scans for good reason.......something to the effect of possibly saving your sons life.

I have never responded to anyone on this forum as I am to you.  You sound far to educated and well versed not to understand what is being said to you.

Also,  I have high hopes that the CCSVI procedure will help with MS.  I have had MS for 10 years now and have no visible signs of MS.  Everyones MS is different.  

Eating like a rabbit is not going to cure MS.

Last but not least, I feel hostility directed towards those who have responded to you. We all  have our opinions,  but I object to how you have addressed other forum members, especially Quix who took a great amount of time and thought to address you in a thoughtful, onsiderate, kind, and informed manner.

I think you are a transparent CCSVI mole.  Too bad.  Gives CCSVI a bad name when it is showing progress.      

[jujuminx]

Wow, several things really were glaring in your post scared. I hope you don't mind if I ramble here.  I don't know what kind of MS your son was dx with but if RRMS, then by it's very nature, it remits and relapses. Sometimes thoses relapses can be decades apart (like mine) and a person not have any sx from one relapse to another (again like me).  It's isn't necessarily due to anything the person does or doesn't do (like eating a raw food diet).

My first sx of numbness happened in my late 20's, only to compeletly fade w/in 2 months. Same thing happened 8 yrs later, then again 10 yrs later.  The protocol for relapses has been explained to you in earlier posts.

I don't know of any neurologists who would say to a person with MS NOT rest, or modify their lifestyle (ie, exercise, stress reduction, avoid heat, etc) in some way, and some even would recommend a change in diet, to a lower fat one.  

One of the most well known researchers in MS lifestyle changes (Swank), recommended many of these lifestyle changes but ALSO recommended taking DMD's, he said they needed to be used in conjuction with those lifestyle changes to give a person the best chance of living a normal life.

All the literature I have read (on copaxone) has indicated that it decreases relapses and reduces the effects of them in a certain percentage of patients. That along with some of those lifestyle changes gives you the best chance of helping to slow the progression of the disease but it is by no means a guarantee of anything. And it is not a cure.

The CCSVI is not something I can competently talk about, but based on what I do know about it and your apparent belief in it and the flavor of your post, I am thinking that no matter what I say, you will hold fast to your perceptions of MS relapse protocol and CCSVI treatments.

That being said, and please don't take this the wrong way, what is your point of posting your latest post in this forum?  If it's ranting, that okay, we all have our days where we need to do that but it just seems that your post is somewhat antagonistic. Maybe I am getting the wrong impression, perhaps it's just fear for your son and anger towards a medical community that cannot cure him.

Perhaps the most important thing I got from your post is that in spite of the challenges of getting my MS dx, I am grateful that it is me who has this disease and not one of my children (at least not yet) b/c after reading your post, I can see how much difficulty you are having with your son's MS. It's not a position I would want to be in.  I am so sorry.

I hope you find the peace you are looking for. The best of luck to you and your son.

Julie

[scared341]

Dear all,
Dear Quixotic1, I wish I was able to agree with you. Unfortunatelly, I tend to disagree...

Seven months after the first crisis and the subsequent MS diagnosis, my son has recovered to the point of no visible damages. The largest contributing factor in his recovery so far seems to be his raw food vegetarian diet.  The next option that he is hoping will stop any further progression is CCSVI.

Looking back again, at the nightmare of the first days at ER, I am still trying to get in terms with the fact how uneducated and ignorant we were letting doctors inflict considerable harm:
- 3 absolutely unnecessary CT scans within one hour. Radiation levels that many people will never receive in their lives. Radiation levels that may cause cancer in the future.  There are plenty of publications on the topic. I am attaching just one:
http://www.medhelp.org/posts/Family-Medicine/Concerns-About-X-Ray-Exposure/show/630417
- Excessive amount of Solumedrol - according to the literature steroids should be discontinued at the first signs of improvements, in my son’s case he was back on his legs at the 3d day.  My son was misinformed and pushed by a neurologist to continue the drug for 5 days which left him disoriented, with fever, excessive thirst, difficulty to concentrate, heart palpitations and extreme fatigue. It made him a seriously ill, half-person in five days. Please, do not tell me that this was MS. No, it wasn’t. All these symptoms appeared with the overdose and disappeared after cleansing.  Hopefully forever. I was told after the fact that corticosteroids can have unpredictable side effects including brain atrophy.
- Gadolinium, for the harm of which no one informed us; neither were we given opportunity to select a less toxic version of the drug.  

When we were most shocked and stressed out, neurologist were trying to intimidate us further, citing the same mantra: “You will not be able to walk again in 4 to 6 weeks when the effect of steroids is gone, you will be in wheelchair in 2 years, you will be dead in 10 years. We do not have to look for a cause; we will not try to find if metals, veins, thyroid etc. is causing your MS symptoms.   You do not need rest, life style change, diet, etc. Your only option is our drugs. The only thing you should do is our drugs. Start now! “And “You, the bright, successful mathematician that is suddenly presented with this future do not need any cognitive therapy either”
My son declined the drugs.

Thinking about the above, I saw this publication just to feel worse:
Hospitals hurt 1 in 6 patients, study says – Health – The New York Times - http://www.msnbc.msn.com/id/40370892/ns/health-the_new_york_times

How I can ever be at peace knowing that I could have saved my son from unnecessary long lasting harm by simply supporting him to refuse most of the “care” in the ER / hospital!