How do I know who to believe?

[pukie]

I was diagnosed in 2005 with relasping/remitting MS by a well-known neurologist.  I have had MS symptoms for approximately 30 years, and was first tested when I was 25 years old. I am now 57.  At that time it was primarily a "shocking" sensation down my neck and back that led to testing. The spinal fluid examination at that time was not definitive for MS.

The neurologist started me on Copaxone in 2005, which I administered for two years.  I was having relaspes about every three months at which time I was prescribed IV Solu-Medrol.  I was started on Tysabri in late 2007, and while on the medication had no relaspes, and felt better (physically) than I can ever remember feeling.

My neurologist decided not to participate with my particular insurance, so I was forced to change physicians.  The new physician at a well-known research hospital states that he doesn't think I have MS; although, he cannot tell me what I do have.  My MRIs have gotten progressively worse for white matter changes, but he says that my spinal fluid was nonspecific (elevated protein only, no bands) my white matter lesions  (on brain) are nonspecific (my first doctor said I had 150 lesions), He took me off Tysabri and my old symptoms are back. These include numbness in hands, arms, feet, and legs; a sensation of a "motor running" in my feet and legs;fatigue that keeps me practically bedridden; confusion and slow word recall; spasticity; bladder and bowel difficulties (constipation and urinary retention); dizziness that feels as if I am falling to the right; eye movements that feel as if my eyes are waving horizontally to the right; and a weakness after taking a bath in barely warn water. I have to stay indoors during the summer months because the heat makes my legs feel like I am dragging concrete blocks and increases my fatigue. My relexes are hypersensitive, which is the reason my primary physician started testing me in 2005.  He felt I had MS and sent me to my first neurologist.

I recently found out these two doctors were in practice together at one time, and apparently there is very "bad blood" between them as relayed to me by the local MS association. My current neurologist seems only to want to prove my former doctor wrong, and constantly belittles his skills, while  he is extremely condescending to me.

I can't understand how two well-trained, well-respected neurologists can differ so widely in their diagnoses.  Meanwhile, my depression is becoming overwhelming, and I don't know where to go from here.  I am on social security disability (approved with my first application in 2006), and I know something is wrong with me.  Does anyone have any suggestions. Thank you.

[sllowe]

Hey there!

Welcome!

YOu still with us?

Oh, I'm so sorry you have to have doubts in your mind at this point in your life as to what beast you are battling! Shame on these Drs to leave you in this position --- if I may be blunt -- it's BS!

Even though your Dr does not participatet in your insurance any longer, can you call him up? Tell him what is being said now?

That would be my 1st move.  Let your Dr. put your mind at ease and hear what he has to say about this.

I'm so sorry you have to go through this.  
I hope you like it here w/us and that we can help you out.
-Shelly

[doni54]

Hi Pukie and welcome to the forum, I'm glad you found us.  Just wait until our resident den mother hears your story, she will be livid!!!  Her name is Quix, so watch for her response!!

I agree with Ess and opie, this neuro sounds like a total @#$%.  We hear about these kinds of physicians on this forum on a regular basis.  Makes you wonder what they're teaching neuros these days, huh?

I am so sorry you are going thru this craziness, as the Tysabri sounds like it was doing great things.  We have a couple of other members here that are on this DMD, can't remember their names at the moment, but they will probably check in.

I just don't see how a neuro can take away your dx of MS, when the Tysabri is working to lessen your symptoms.  Seems that alone, would tell him something.

If you can't go back to N1, at least find a neuro who will give you back your dx and get you started back on the Tysabri.

We're all here for you and hope we can help get you through this nonsense.  I just can't wait for Quix to read your post!!!!

Take care,
doni

[opie74]

I don't care if you have to borrow the money for office visits, get you self back to the old Neuro, or find another one.  We can't let the overeducated idiots ruin our life.  

I have never had a LP.  I have no idea about my spinal fluid and I was given two Dx of MS.  This guy is just a stuck up *****!

Sorry about ranting, but a dr killed my brother-in-laws transplanted kidney because he would not listen!  Stand up Sister!

[essdipity]

Hi, Pukie. ( I'll bet it's an interesting story how you came to choose that screen name.) The symptoms you describe positively scream MS. I can certainly understand your need to be on Tysabri or whatever med seems to help.

My advice to you is very simple: Do whatever it takes to be treated by another MS specialist, and start the process today. You're right, you can't afford to be in the position you're now in.

Even without the outside issues of "bad blood," your current neuro seems to be saying that in the absence of LP results pointing to MS, you don't have the disease. Also that lesions have to be specific. Both of these assumptions are a load of cr@p. It makes matters much simpler if these tests fall within definite MS descriptions, of course, and this guy is sure looking towards the simple. But he of all people should know that MS is a clinical diagnosis. That implies that he should actually use his brain to arrive at a reasonable diagnosis.

The bad history between him and your last neuro just seals the deal. You must not let yourself become a pawn in their dislike of one another, and you must not allow anyone to treat you in a condescending manner. Your health and in some ways the entire quality of your life are at stake.

Could you contact your former neuro and ask if he can recommend several others he has faith in? No need to say much about the current one, just that you are "uncomfortable" with him. Don't let yourself be drawn in in any way, however much a part of you might want to. All you want and need is a neuro to treat your MS. When you do find a new doctor, take all your pertinent medical records and tests along with you to your first appointment.

What you can accomplish tomorrow is an appointment with your primary doctor. Tell him or her how poorly you are functioning and how depressed you are. Be clear that things are reaching crisis proportions, and that you need an antidpressant right away.

Please also stay here and let us get to know you. This is a great place to be.

ess