A Testament...

[Cat Mom]

to just how rubbish this disease is!!!!

Had my 6 month checkup with my neuro. He told me that the brain MRI I had last Sept showed a few new lesions. None were active but "mild progression" has taken place. Not switching meds at this time. Gotta see him in 6 months.

The thing that blows me away is... nobody called after the MRI to let me know. That it's NORMAL and EXPECTED to have new lesions, not warranting a phone call or a neuro visit as there's nothing anyone can do about them.

Is it just me?

Jen

[SNOOPY]

The thing that blows me away is... nobody called after the MRI to let me know. That it's NORMAL and EXPECTED to have new lesions, not warranting a phone call or a neuro visit as there's nothing anyone can do about them.
Jen

Hi Jen,

You have a right to be notified about your MRI results and should have been notified. Maybe it's time for a new Neurologist.

[Thinkimjob]

Hello, Cat Mom. Sounds pretty par for the course. Me, fantastic neurologist with all the information, you the patient who pays up and can be kept in the dark.

I always feel like I have to prove I'm actually quite intelligent, and I do know a thing or two, otherwise they limit the amount of information they disclose.

(Then they take great delight in correcting something, 'cos you're not a doctor, you oughta leave that there high-falutin' stuff alone.)

Would you have asked to switch to a different drug if you'd known about the new lesions? Why make you wait six months, why not tell you after the MRI?

Getting a new neuro isn't much fun, either. Good luck.

[Jules A]

I agree 100% that you should be informed of your diagnostic results but also think it is a testament to the futility of this crap disease.

[popie]

I understand

I think it is an occupational hazard. The Doctors are trained all thru their educational process that they are geniuses and especially by their family members. By the time they begin practicing most of them have a god complex. They especially don't like to acknowledge that they don't understand something and can't make a diagnosis. Their main mission is to process as many dollars thru their practice as possible. Actually spending time analyzing your case, evaluating your treatment and caring about your well being is low on their list. Don't feel bad, your Neuro probably didn't know more than 5 minutes before your appointment what your Sept. MRI said either!

[Jules A]

I think it is an occupational hazard. The Doctors are trained all thru their educational process that they are geniuses and especially by their family members. By the time they begin practicing most of them have a god complex. They especially don't like to acknowledge that they don't understand something and can't make a diagnosis. Their main mission is to process as many dollars thru their practice as possible. Actually spending time analyzing your case, evaluating your treatment and caring about your well being is low on their list. Don't feel bad, your Neuro probably didn't know more than 5 minutes before your appointment what your Sept. MRI said either!

It is unfortunate if this has been your experience but it is unfair to make such harsh blanket statements about all physicians.

[mjan]

Sorry this happened to you. And yes, we all agree you should be notified of any new information and at least be sent a letter if nothing has changed. Many new computer programs have a patient record that is shared with you online. For example, mine is called MYCHART under my health corp's name. I can look up results and leave a message for my doctors.

Most of the time, they will hold onto serious information and call you via phone. But I always get a copy of my medical tests results from Medical records. That way I am prepared and ready to follow up with questions.

So what did you tell them when you found out? Again, get copies of your MRI (CD) and a few days later go back to get the report.

Let us know what happens. But yes, this is poor communication and protocol, esp when there ARE new lesions!! Geez..

Jan

I wonder what

[mjan]

I think it is an occupational hazard. The Doctors are trained all thru their educational process that they are geniuses and especially by their family members. By the time they begin practicing most of them have a god complex. They especially don't like to acknowledge that they don't understand something and can't make a diagnosis. Their main mission is to process as many dollars thru their practice as possible. Actually spending time analyzing your case, evaluating your treatment and caring about your well being is low on their list. Don't feel bad, your Neuro probably didn't know more than 5 minutes before your appointment what your Sept. MRI said either!

I am sorry if you feel this way. There may be some, who have some of these features, but many do not.

Many, in my experience, give above and beyond in time and effort without acting like a "god".. I know.

I have worked with many and have had many as providers. I understand that for some it is a challenge to say they are wrong, or admit that they do not know. Most make me feel like a partner. After all its MY health and well being.

Hope you have better experiences in your future.

Jan

[Thinkimjob]

I think you're right Jules A. It's a crappy disease, and they can't fix it.

I feel like I've been drip fed information from the start. Like a child getting the news about the tooth fairy, Santa and the Easter Bunny. When they think you might suspect, the reality comes out.
With MS, as I get worse, they tell me a little bit more.

i was utterly astonished to be told I had severe MS, and had probably had it since the start, after years of "there's no significant change in your MRIs" and "you're doing really well".

No one ever said "considering" first.

That particular cat was let out of the bag only when my physical condition made it blindingly obvious.

I don't blame the neurologists, and I definitely didn't want to hear the full catastrophe, but in retrospect I would have made a lot of different decisions had I been told.
I was skipping about thinking "I'm so lucky, it's benign" but it isn't and apparently it never was.

[Cat Mom]

Thanks! I appreciate everyone's input.
Jen

[Jules A]

I think you're right Jules A. It's a crappy disease, and they can't fix it.

I feel like I've been drip fed information from the start. Like a child getting the news about the tooth fairy, Santa and the Easter Bunny. When they think you might suspect, the reality comes out.
With MS, as I get worse, they tell me a little bit more.

i was utterly astonished to be told I had severe MS, and had probably had it since the start, after years of "there's no significant change in your MRIs" and "you're doing really well".

No one ever said "considering" first.

That particular cat was let out of the bag only when my physical condition made it blindingly obvious.

I don't blame the neurologists, and I definitely didn't want to hear the full catastrophe, but in retrospect I would have made a lot of different decisions had I been told.
I was skipping about thinking "I'm so lucky, it's benign" but it isn't and apparently it never was.

Thankfully I knew 2 people with progressive MS and then went on to work as a nurse caring for many people incapacitated by MS both on neuro and psych units. Since I have seen the worst MS can do the lukewarm optimism and vague prognosis from our peers didn't ever fool me.

What is very interesting is that other than my neurologist who acts as if he is more hopeful than I feel is realistic, the other health professionals I have encountered are not purporting this hearts and flowers version of the possibility of such a thing as benign MS. I always say I'm thankful to be doing well now but realize that the bottom could fall out tomorrow and not one has ever argued that point with me.

So my life for the past decade has been working and planning for the time when this monster robs me of all my abilities. Sounds like fun, huh?

Although I agree with being positive and continuing to move forward, while I am still able, the naive optimism regarding the likely outcome of this disease and the continued disregard for the very real chances of passing along this horror to our innocent offspring makes me sad and frustrated.

[Mable]

Hm. I don't have the big picture, but if I had been on Copaxone for a while, and my MRI showed breakthrough disease, I think I'd start pushing hard for a more effective treatment.

I've noticed that some of my MS friends with older neurologists have to be more proactive to get those treatments. Some of the old guys are on autopilot set before all the new drugs came out.

I'm not a medical pro, and I don't know all the details of your case, so take my opinion with a grain of salt.

[jessiesmom]

A Different Perspective


I absolutely agree with everyone who said that your neuro should have notified you soon after the MRI of the results. It is poor office management or patient service to fail to notify a patient of any kind of test results.However, at least part of the delay has to rest on your shoulders. You cannot just passively sit there by the phone/computer/mailbox and wait for the information to arrive. If it didn't arrive in some form within a week (or whatever you feel is a reasonable time) then you should have been on the phone to the doctor's office. You are your own best advocate. You have the absolute right to expect to be notified within a reasonable amount of time. If you choose to endlessly wait then that was a choice you made.

[misslux]

We are our own best advocate. Any time you get tests done, make a note to follow up.

Playing devil's advocate, doctors are human and things fall through the cracks especially when there really isn't anything to be done since DMDs prevent relapses but don't stop progression (so not really a medical reason) to follow up. Plus some hospitals have a policy of NOT sharing results over the phone and requiring you to book your appointment for results if you don't hear from them about booking. Really you are only contacted if it is serious / something that requires treatment.

[mercadies25]

Jessiesmom you are right. I always get a copy of my MRI and the radiologist's report for my own records. they usually have all this ready for you within 24 hours. You have to ask for it.

Also I agree that the neuro did not know anything about it until 5 minutes before your appointment.

I have a great neuro but his staff not so great. they are the ones who get the information. if they didn't tell him or acknowledge it he knew nothing about it.

good luck!!!