10 years of being in Probable MS !

[Serenity581952]

Hello everyone, Just started here on this site. I am a 59 year old women now and I have been seeing a Speacalist in MS Nurology since April, 2011. Was told by two nuro's during the last 10 years ago I had MS. One said Probable. They did nothing for it. So I went back to work and into denial. So currently I ended up in the hospital in Feb of this year for 4 days. It was my heart. Tests on that were negative.(releived)  After I was to see Nuro. again so I went to a MS speacialist. I had an MRI done of head only, and then told by his one of his other Nuro's that work with the Spec. Nuro that it is MS for sure. I just found out by the secretary that finding was written on my record as being Probable MS, and not Diagnosis= MS !  After the Dr. told me it was!!  Basiclly I was not told the truth. Also just went through a severe spazym in my left arm and hand a few days ago, it was locked and I could not release it on my own. It eventually relaxed.  It was so scary and painful I called the Spec.Nurologist office for help. The secretary informed me that both Dr.'s were too busy to call me back for the next few days and that the Nuro has communication with his patients online only. He also said I need to see my primary Dr. and not the Nuro for this spazem issue? Well, I did not end up getting that information (online e mail to the Nuro. Dr.) and still have not received it from that secretary who was supposed to give it to me. Beginning to think that this Dr. is not for me. My very life could depend on his lack of responsivness to my future issues with MS disease. What do you all think of this?  I am so done after being treated so poorly by some of the medical profession. Have been dealing with Probable Diagnoses for 10 years now!  My brother just past on from Progressive MS. He was only 59 years old two years ago. He waited 13 years before the Dr.'s could fiqure out what was wrong with him. Now he is gone !  I recently was told I have Secondary MS according to the Nuro. Why do they persist in waiting and seeing? What is it going to take to see that this effecting my life? How bad does this have to get before they do something ? Probable is not believed as an MS diagnosis!  I can no longer allow this to continue, as they are failing to Diagnose this disease for what it is. I have two medicine's now, one for spazyms, and one for severe fatique. Spazyms still there! Thank you all for any input you can share with me. God bless you guys!  : )  

[grannyhotwheels]

So sorry that you are having to go through this and I'm also sorry for the loss of your brother... I'm not so sure it's the doctor that's the problem but perhaps the secretary?   I wonder if the doctor knows how she treats the patients and how rude she is?  

If you do decide to go back to this doctor I think I would take in a note pad with everything you have just told us written in it... You should be able to tell by his immediate reaction if this is the way they operate or if it's news to him... I personally would go back just in case nobody has ever reported her before now...

Do you have a copy of the report that says probably MS after the doctor told you definetely MS?  I'm asking because if you don't have it then maybe she is lying about that too... I just don't deal very well with rude people... I just want to smack the back of their head and yell, "hey, I'm an adult with feelings and I would appreciate being treated as such"...  Yep, that's what I would do... hahaha

I don't mean to make light of the situation by throwing that in there but it just makes me so mad... Hopefully you will find the answers you need soon... In the mean time we will be right here to help you through this...

I'll be praying,
Carol

[Lulu54]

Julie has pretty much nailed this answr for you.  It is time to find a doctor who will listen to you and work through the diagnostic part and come up with some answers for you.

It is very confusing to my why they would say yes, then call it probable and then not want to call it anything.  

I am so sorry that   you have lost your brother this way - MS really does have a dark side.

Lulu

[jujuminx]

First let me say I am so sorry for what you have gone through and are continuing to go through. It all sounds terrible but parts of it are somewhat common unfortunately.

It sounds to me like you have really already answered your own question. You need to find another dr. As you said, "I can no longer allow this to continue, as they are failing to dx this disease for what it is."

Particularly with a sibling with the disease, your chances of having it are much greater than the general population.  I am not saying you have it since I have no idea what tests you have had, what all your sx have been, and of course I am not a dr.

Has anyone told you why they keep saying probably and not definate (or at least as definate as they can be with MS)?  What's the hold up? What tests have they yet to run or are not pointing to MS? What do they think it is if not MS?

It's your life, your body, your future. Since you asked, I suggest you move on and find someone who will at least look at your tests and offer a definitive opinion.

Good luck and welcome to our forum. It's a great place for support and information.

Julie