The state of medical care

[CtResident]

I have a family member studying to be an RN.

She was told by my mother about my search to rule in/out the MS diagnosis.

She asked me if I have had any bloodwork done to diagnose MS. I said Nooooo, I did bloodwork to rule out the MS mimics, there is no bloodwork to diagnose it!

I mentioned the MRI's, EEG, VEP, BAER, LP........she didn't seem to catch on (granted, this was on the phone).

Then she mentioned, Y'know, it could be stress. Do they TEACH THEM THIS?

I will not comment further.

Suzanne

[SOONERMOM]

I got a similar comment from my BIL who is a 4th year medical school student!

He didn't say stress was  causing it, but said something about the mind being very powerful and could make you imagine things that really aren't there.  My husband said "yeah, she's imagining all those white matter lesions in her brain too".

I think there is just a HUGE lack of knowledge in general about MS.  I guess we just have to educate these people one at a time!LOL

Stacey

[monotreme]

Hi Suzanne,
   I belong to an Aspergers email loop for homeschoolers and their response to siblings who sometimes get resentful about their special needs family members is this:  parents give each child what they need.  Some children need more help than others.  Some need more accomodations than others.  If you do not need one week to learn a new math concept but your sister does, then she is given what she needs to succeed and you have been given what you need to succeed.  So each child in the family has exactly what they need.

   It is apparently a common occurrence.  I get the same complaints.  You have made me feel so much better.  Our AS daughter is 18 and just about has enough credits now to enter Junior year.  We homeschool 12 months a year.  So she will be almost 20 when she graduates.  I have had to reduce her course work since she gets so stressed and then it slows down the whole high school process.  But if you rush her, she does not learn anything.    So then what good does that do??  

   So, now what can we do about finding you a new neuro??  What about the one your dad goes to?  
  Elaine

[CtResident]

Hi Elaine,

I keep working with my girls, even though they are 19 and would have graduated last year. I will do this until........until......um, haven't set a date, don't plan to either!

This week we got through 5 division problems per day. Takes a while, but I have a saying: "Baby steps are still steps." I just keep modifying books we have around, don't use a tutor or anything. No bought curriculum either. I absolutely love what I do, and would never blame my kids. My son sometimes gives me more grief than his special needs sisters, so what would the response be to that?

Every single person and family has stress, even single people. It's called LIFE.

God bless you and Craig and your entire family! :-)

Suzanne

[monotreme]

Hi Suzanne,I am glad you talked to your sister.  By the way, we homeschool our six  kids, and four are special needs...one with Aspergers, one with ADHD, one with auditory processing disorder and dysgraphia, and one with speech apraxia and possible  Aspergers.   It is getting harder and harder to continue to homeschool.  However, in our state, kids with special needs are not allowed to be in regular classrooms after third grade.  So I have hired a tutor for six hours a week to help with my  two older daughters so I can spend more time with the younger ones.

Craig was told by doctors early in his illness when he developed severe crushing fatigue (he had always been very energetic and ambitious) that it was caused by having six kids, trying to go to law school at night and being in a homeschooling family.  What nonsense!!

I am planning to post about Craig's MRI.  I need a bit of time to compose.  
thanks,
Elaine

[CtResident]

Thank you for explaining that. I'm the oldest (of 4) and sister is 9 years younger than I am. We don't really cross paths all that often due to schedules and life in general.

To her credit, and I really try to see the good in things, she is the one who called me to see how I was. She told me her textbook and gave me the link to look it up online so I could see what might help me. Our conversation was less than 5 minutes, but for what it's worth, she did reach out! :-)

I will try to talk with her some more, who knows, this may be a catalyst for change. Perhaps I was wrong in what I originally posted. But that word Stress gets such a negative response from me. Yes, I homeschool my kids, yes I have two with autism, but SO WHAT. She didn't allude to any of that, I just had a knee-jerk reaction (not related to MS, lol).

Shame on me. I am sorry for that. I did try to remain discreet and not malign her in any way (a "family member").

Ahh, off to eat breakfast and find the good in this day.

Praise to God!

Suzanne  
P.S. There is another thread down the list there for you and Craig, I will bump it up.

[monotreme]

I have to comment here as a RN who is currently not employed.  Most nurses get their RN with a Bachelor of Science degree in Nursing.  I went to a diploma program...11 months a year for three years.  Worked three full days on the units from day one of the program.  Degree nurses sometimes do not get on the units and take care of real patients till their third or fourth year.  They miss alot of hands on and I think alot is not covered in their courses.  They will graduate and choose a specialty and work under a nurse mentor for a year to really learn the ropes.  Or they will flounder on their own and learn as they go.

So your sister may have no idea what she is talking about because she hasn't even had it in school yet.  Or the neuro rotation may be so short that they go over the diseases in a cursory manner.

Too bad.  Maybe you can teach her what really goes on!!!  Back in 1979 the American Nurses Association pushed to strongly encourage degreed nurses to elevate the profession to a higher status in the medical field.  However, perhaps they should have made it a five year program. or mandated summers on the units to get experience.

Elaine

[gooddays]

Sometimes our own family is the first one to ignore what we are going through and it may not be because they don't care.  It may be that they do not know how to deal with a family suffering from a chronic disease.  It is easier to ignore it than to acknowledge the fact that your own sister needs your help, but you do not want to give it to her or do not know how to approach the subject.

There are other people who would give their best to help a person in need.  This my reason to say that us MSers are special people in the Lord´s eye.  We have to endure pain, and how so, some of us still work, take care of everybody else, but us.  Special people are not always around to help each other, this is why this forum is so great.  We may never meet each other face to face, but we can always count on somebody answering our questions and our concerns.  There are not many people as caring as the ones in this forum.  Stay with us, we won't let you leave.

I will let you in my Ms history in another post, I just wanted to let you know that you are not alone, medical professionals today lack a lot of human skills, including our family members.

I hope I have chipped in my two cents worth of advise.

Take good care of yourself and remember that we are just a message away.

Gooddays

[CtResident]

Okay, I said I wouldn't comment. But I have to, guilt here.

The family member is my own sister. It is OUR mother, not just my mother.

Air cleared.

Suzanne

Pssst, Rena, where are you, don't make me call the dr!

[Rena705]

We have a provincial election looming in our midst and it is absolutely HILARIOUS what these candidates are promising...more doctors, more nurses, open more beds in the hospitals...there are pile of beds in the hospitals now that are closed down due to a lack of nurses and doctors to cover them...we can't get people to work at MacDonalds...they are offering $12.50/hour for day shift for crying out loud and can't get anyone to work!  It just gets scarier all the time!  

Then they say well we will bring people in from other countries and train them to be doctors and nurses....we have nowhere to live for our high number of homeless now...where the he** do they think these people are going to live?  

I could go on for hours on this subject but I will be kind and attempt to take my puppy for a walk around the block...if I am not back in an hour send me a doctor ok? ha ha ha

Rena

[spastic]

It is very, very, scary...  Where did all the great dr's and nurses go? Even though I have to admit I love my pcp, I can call him at home, if I call at the office he gets on the phone quickly. its so funny, I think he leaves my file in his office. All he can say is what you have is rare I have never seen it before. but I gotta love him. lots of hugs, ada