perplexed by dr's

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perplexed by dr's

Postby raizur » Sat Feb 16, 2013 2:09 am

Hi everyone this is my first post.
I have read a good deal on this site and others.

I have had a long hard go at this sudden change in everything and feel like an over washed shirt.
I turn to your experiences as a community.

After having a very sudden case of paralysis of the entire left side except torso I was told i had a sudden stroke and I would need to be transferred to the city to be tested and treated.
After ct scans, xray, etc etc... I was told there was no signs of stroke etc. but an mri showed an abnormality.
I'm shure we all know the road ahead wasnt easy and the red tape doesnt need to be typed up. However the prognos of stroke and such and such seem to have caused such a confusion / mess of my scenario that I have been bounced to n fro with stroke clinic mri etc but NOT ms clinics even when i was set up for them.

End result is this

After nearly 2 years I have finally seen an MS neuro at the MS clinic. This neuro entered the room stating to she "knows" the mixups that have happened causing me to be there a year later then i should have been. She took my list of symptoms, took a seconds glance at it, dropped it on the table and proceeded to ask a few questions and "test" a few things like responses, spastisity.
Then upped my 300mg, 3 time a day gabapentin to 900mg, 3 times daily and TTTTTTTTTTT, explained the interferon treatments and such (which i already knew about) handed me pamphlets that I already knew the info in and sent me to the nurse who really didnt do much more...

Before i add to this i want to emphasize the one second glance at my symptoms list.

When i pointed out my issue with balance / vertigo being present when waking up, tired, hungry, stressed, etc she told me to walk a line toes to heel i was fine in balance. Of course clearly not considering that i had been up for several hours, had been having very easy restful, stress free days for about a week, and was no wheres near tired......

So my issue is this...

How do i get these docs to hear out what im saying without breaking down infront of them (which effexor seems to elliminated due to inability to actually cry, etc)

Argggg it sounds retarded as i pre read my own post but it is what it is.

Hope some light can be shed here in form of advice and thanks before hand for and input you might have.
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Joined: Sat Oct 06, 2012 4:04 am


Re: perplexed by dr's

Postby want2bike » Sat Feb 16, 2013 6:30 am

These doctors can only prescribe drugs and that is not the answer. I am posting a video by Dr. Bergman explaining how to heal autoimmune disease. Also a study showing drugs do not work. A video showing why we have the medical system we have. These doctors have a standard treatment and they are not interested in what you have to say. Their job is to prescribe the drugs which the drug companies have told them to prescribe. The only way to get better is get the information and take control of your own health.
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Re: perplexed by dr's

Postby raizur » Sat Feb 16, 2013 9:21 am

Don't get me wrong, I don't believe MS clinic Dr's can do much more but there is to some extent things that can be done for symptoms and I dont feel that I was given anywheres near enough time or room to explain my issues for her to have a clue how to treat my symptoms.

Know I'm not one to exactly take chemicals into my body and infact refused pain killers, and did not take over the counters but only used good ole thc in order to put up with the intense pain of teaching myself without any medical assistance, aids how to walk, stand, talk (properly), hop onto picnic tables with mtn bike.... (yah long story but u get the drift)
About 3 months ago I was having what seemed to be another/continuous exacerbation in 1.5 yrs and succumbed to Rx, at that point i was given baclofen, told to take vitamin d and stretch....considering the mtn bike thing obviously something i already did on a frequent basis (more then a few times daily)

Here I had been rush in and out after being told i had a 9am appointment and it being changed to 2pm with a total of 5minutes to talk (listen to) the neuro.
My wife was handed a ton of info pamphlets that proved useless to me and grand to wifey.

The only real thing i saw come out of it was a speedily written Rx for oxybutynin chloride and a bunch of info on interferons/copaxone etc (didnt need the info either) and told how to go about getting set up with whichever i decide i want to put with the symptoms of.....

So an honest SWEET access to the preventative meds while i tackle how to manage my condition and how to "properly" figure out wt* is going on with me, and how to fix it..... if possible.

I truely feel my situation and quality of life for me n my fam while i tackle this in and educated fashion.

So how do i get them to take enough time to hear me out. 5 minute appointments every 6 months will have me being treated for symptoms by 2015....

I should add that since recovering most use of my left side I have just as quickly (minutes) lost most use of my left side, and found myself almost back to square one.

I will deffinitly be taking a watch on those vids when i get home tonight. thanks for the links.
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Re: perplexed by dr's

Postby Froggie » Sat Feb 16, 2013 10:18 am

Hi raizur-

Welcome to the forum. Sorry to hear about your frustration w/ the docs. If you are not getting the care you desire, it's okay to switch. The first neuro I saw had a decent beside manner, but her office was totally unprofessional. I now go to an MS Center that's part of the university hospital. The care is far superior to what was available where I lived previously.

Learning how to talk to your doc is extremely important. Bringing a spouse or a trusted friend with you is a good idea, as they often see things that you don't and can keep you on track. A couple of really good books that deal with the topic are:

1) Treat Me Not My Age-Dr. Mark Lachs
2) Lean on Me- Nancy Davis

The Dr. Lachs book mostly focuses on geriatrics, but has some good pointers. The Nancy Davis book is written by a fellow MS sufferer and covers a host of issues.

If you feel overwhelmed, you're not alone. While the Internet can be a good resource, it's not always dependable, as people try to pass their opinions as fact. Learn everything you can about the disease and explore all of your options.
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