ms

[heartfelt77]

Well , I have decided that I'm going to go to another neurologist before going to Cleveland clinic. I can only pray that he will have answers.  I don't understand why we have to go through so many doctors just to get answers.  It's like they love eating up the insurance money.  And people want to know why insurance cost so much that's why.  Wouldn't it make more sense to just have one doctor be able to give you a diagnose.   Could someone please tell me how many nueroglogist do you have to see before you finally get diagnosed?  This will be my 3.   Crazy.   I'm going to start putting on the cards on the table.  And getting mean with theses doctors because at the end of the day .  It's my health not their.  I bet they would have answers real quick if it was them going through this.  It's like they are playing is game.  Well game over.  I'm not being nice Not being nice and sweet anymore.   I'm been going through this doctor crap going on three years.  That's crazy for the money they make.  And normal person knows if you can't do your job right then you shouldn't be in that job.  Doctors try to play god but the bottom line is they are not.  They expect to sit on there butt and get paid----   Sorry very mad--- Reading all of this and going through my situation.  It's time to say enough enough-   how long do people have to suffer.   If anyone has any thoughts I would love to here them.  Or any advice.  Know that god is on everyone side no matter what. And in the end of the day.  He know what's right and what's wrong.  And don't forget he loves you and is always there for you.   I hope everyone is ok.  My heart goes out to everyone on here.    If I was able I would help everyone on here.  Because everyone only wants to live and have a normal life.  It's just sad we have to fight for it.  Stay well.  Never give up.  Misty

[Sumanadevii]

Pssssst...those power chairs are too heavy to tote around in unless you are lucky enough to have a van with a lift.  They are a lifesaver at home but don't expect to go traveling with it.

A good idea is a scooter.  Most break down and are about fifty pounds.  Other than that...you are left with a manual wheelchair.

I don't blame you one bit for being angry at doctors.  When I stepped foot into my second neuro's office (after years of searching  with different specialists and one very stupid neuro), I was so angry I was talking over her.  She knew something was very wrong but I couldn't even answer questions because I was going off on her.  It was my husband that was answering for me.   That dear woman had me dx by noon the next day and the following I was in treatment.

Never give up!  Sometimes anger is justifiable and when used correctly can actually help us.

[heartfelt77]

I also need to remember to write the questions down that may help.  I'm on a lot of meds.  Along with pain meds..    Yes the doctor are trying to manage my symtoms .  Mainly my pain is being managed.

   I went out and bought a tens machine because I had physical therapy in my home who recommend that it would help to relax my muscles.   I recently had the office of the aging in my home to try and get help during the week.

    And they approved that so, I just have to pick an agency.   I also applied for a power chair so, that I can get out more to enjoy my family.   I should find out more about getting some help this week.    Thanks Misty

[heartfelt77]

   Thanks Lisa for your support. And I will never give up. I'm a pretty positive person.  So, tomorrow I plan on finsh getting the rest of my records together and going to another nueroglogist.

   If he doesn't give me the answer I need then I'm going to try to get to Cleveland clinic.   I just wish I had a mentor something that knows all the right questions to ask. Because sometimes my mind goes blank.  I just have to much to deal with.   Thanks for all support.   Misty

[LisaJF]

@LuLu:  I disagree.  I think the percentage sways to the side of bad and poor mannered doctors rather than good ones.  If you took a poll, ask how many people have had changed doctors and/or Neuros due to their lack of communication, empathy and giving a $hit.

It is fortunate you have the MD you have.  Perhaps its your insurance, perhaps you're not medicaid.  Perhaps you just got lucky.  I'm glad for those who have a wonderful doctor, I truly am.

@Heartfelt:

You keep on going until you get answers that you deserve and trust me, no one is counting how many you go through to get there.  Sooner or later, you will end up with someone who is "all in one" for you.  It's your health and no one will fight for you save yourself.  You just have to find the right doctor to help YOU.

No one wants MS....And perhaps, you may not have it or you may...In time, it will show itself.  The process is grueling and it takes a toll on you. "Most" of us have been through it and are still going through it.

My heart goes out to you.  Hang tough kiddo.  

Welcome to the forums and don't be a stranger.  Let us know what's going on with you and your journey.

Lisa

[Lulu54]

Worship doctors?   Absolutely not, but I honestly believe that there are more good ones than bad ones.  They are every bit as human as you and I, and can make mistakes, become indifferent or be swayed by money.  I happen to like my medical team and have respect for them, but it is far from worship and I do question them at times and have even been known to disagree.

Your situation sounds horrendous and I'm sorry you find yourself in such a decline with your health.  As Ren said, it often takes more than one doctor or three doctors or even 5 to find the one that can put the pieces together.  Even though they won't tell you what is wrong, is someone at least trying to manage your symptoms?

As I said originally, don't give up on finding answers.

Lu

[heartfelt77]

  Don't get me wrong it don't want ms.  But ,  I have been told by my nueroglogist the it is possible.  But all your test are normal.  And yes I've done a lot of investigating other diseases.  I have also work with all of the auto immune diseases out there.  The last thing is that I would like to say is that being a burden.        
    
    Oh my I don't think you really understand completely what I'm going through.   I'm in bed 7 days a week. Because my husband works and my kids are at school. I have to use my left hand to type because my right Hans and ARM doesn't work.    That last 3 years of my life has been terrible.  I can say thought any disease is bad.  But the small things that we take for granted I can't do.  If you have ms and are beginning treated for it.  But, are able to walk, go to the bathroom yourself, dress yourself, feed yourself.  I would really consider yourself lucky.  I know that Dr are not going to jump on a diagnosis and I'm not in any way asking for that.  But, I do believe in my case they know more than they are leading on......                          

   You may worship doctor but I can tell you that unless you come acrossed a doctor who actually takes Tim to listen and communicates with you and explains things to you.  Like test report or blood work instead of you finding it out on your own.   Doctor have gone down hill in the aspect of caring for the patient and the money.  They just want to get patients in and out of there door as fast as possible.......     It's like the big lawsuit in the excela health system. Where doctors put stents in patients only later to find they didnt need them.   Again. Doctors are far from perfect.  There is no excuses for them.

[rendean]

Hi Misty,
Since we haven't "met" before, I would like to say 'Welcome' and you have found a great place for information and camaradiere.

As for the number of neuro it takes  to diagnose , it varies per person. It took me 5 neuros and 5 years for a diagnosis,  there s an archive (search this community bar jst above Recent Activity) that I just did a quick search for you.

Here's the link to a poll done regarding number of neuros and diagnosis.
I have been where you are,,, frustrated, aggravated, dissatisfied with little or no answers, doc s that don't listen ad nauseam.

Have yo posted a question on the forum about any good neuros within travel distance to you?

One last thing, a favor actually. Many of us have vision issues and it is hard to read big blocks of typed info, It helps immensely if you could please break your post with smaller chunks. You actually may get more hits on your questions if it's easier to read.

I know your frustration, disappointment, anger and the urge to give the search up. My advice is don't stop looking until yo get a solid answer,,,,even if it's not MS.

I wish you luck in your search and know that's an answer out there for you, Feel free to  come back and vent or ask questions or just for a cyber hug,which is what I'm sending yo know,

Ren

[Lulu54]

Misty, Your anger and aggravation are understandable.  Unfortunately there is just no clear cut diagnostic path for MS.  Unless we have a classic presentation - MRI lesions, enhancing lesions, positive LP and evidence of MS on clinical exam - the doctors are not going to jump to the dx of MS.

It is a difficult spot for you to be in - you know something is wrong, but it just doesn't come together in a clinical picture for your doctors.  Being diagnosed with MS is not the answer if the disease process bothering you isn't MS.  

Have you read the health page on differential diagnosis?  There was an international panel of doctors who compiled everything for this study and it is mind boggling how many diseases have symptoms that mimic MS .  I hope you will take the time to read through it and see where your symptoms mght match up with  a disease other than MS.

Once you get a dx of MS, life as you know it will change.  That mark on your record will be there forever and can create additional burdens for you, especially if it is not correct.  I honestly believe that the majority of doctors do want to find answers and do want to have their patients on treatment, but it needs to be the appropriate treatment.  

You can read the introduction to the differentials doctors consider at this link:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/What-Neurologists-Must-Consider/show/1219?cid=36

In the meantime, don't give up on finding the answers.  

hugs, Lu

[kwarendorf]

Elizabeth Cohen, the medical correspondent on CNN, has a great book called The Empowered Patient. It's a how to guide on taking back control of your medical life.

[heartfelt77]

  I just want to know what's going on with me.  And how to treat it. Or if it can't be treated what can I do to make my situation better.  But, it seems like the longer this goes on the worse it becomes.  We will have to see what happens .  I will give everyone an update.  Thanks so much for all the support out there it means so much to me.  It really helps to know that their are people who understand.  Thanks again Misty.

[bibigirl12_10]

i know how you feel about going to so many doctors before actually getting diagnosed with something, i hate the feeling you get along with it, it's like you're so frustrated and get mad at the doctors, it's like "you're a doctor don't you know what you're looking at?" i hate that feeling. i hope everything goes well with you and you get the answers you are looking for.