What do you think?

[worried houswife]

I have been suffering on and off numbness, tingling, muscle weekness, vision cloudiness, tight band around the chest feeling, muscle spasams, tremors in the right hand and head, foot pain, balance problems and many other common MS like symtems.  I have had some white spots on my MRI.  But my Dr. acts like I am jumping the gun by thinking MS..  He won't do a lumbar puncture even though I have requested one.  Yet he has not done any other test to eliminate other possisble causes.  He is finally refering me to the Oregon Movement Institute for further evaluation.  I can't help but think it may be time to shop for a new Dr.   What do you think?....   I am tired of hearing ... Go home and wait 6 more months.. If you may a progressive illness what the hell am I waiting for?   I need a diagnossis to receive treatment and some relief!

[cowgirlup]

Hey
   Its is so amazing to see the compassion the other people on this site have, I only joined a couple days a go and well I feel right home with people that understand what we are going through, I am having alot of the same problems as you and it is nice to know that you are not alone and by golly you are not crazy. You know when there is something wrong with you body and like Rena705 put it if this Dr. won't listen find another and hopefully you can find someone who will listen to you, Iam still workin on that. I wish you all the best. Keep us informed.  

[worried houswife]

Thank you for your support.  My Dr. is a Nuero but not an MS Nuero.  He is remarkabley vague with answers.  He did do a Nuero exam where he had me touch my nose, ect. He says my symtems to not seem to point to one paticular cause. Since the white spots on my MRI are not in the movement center of my brain but in my personality and emotional portions of my brain and I have resting tremors not intention tremors, he believes this may not be MS.  He refered me to the movement institue at the Medical School so I could be evaluated by several specialist of various movement disorders all at the same time. I would think it would be easier and less expensive to just do the lumbar puncture.  However,  I hold out hope that the institute will give me some answers.    Thanks again,  I feels good to vent.  --  Deana

[Heather3418]

Welcome to the forum.  We are glad that you decided to join us.

I know how hard it is to not get answers from your doctor.  Finding a good neurologist or sometimes any doctor for that matter, can be difficult.

If you indeed have MS, I totally understand your urgency to get a diagnosis and get started on some disease modulating therapy.  Rena is correct, MS is always active whether you are having symptoms or not.  If it IS MS, it's very important that you have the right doctor to help you find the answers.  It it's not MS, it's equally important.  Being in the land of limbo as we call it here, can be a lonely place to be.

I hope that you will lean on us for support.  That's what we are here for.  We will be with you every step of the way.  It's always been my opinion, that if you have a doctor that you feel is not listening to you, it's best to find another doctor.  If you feel that way, than that's what you must do.  If you know any friends that have had any experience with a Neuro that might suggest one, by all means, follow up on that.

We wish you well and hope that you will continue to post.  Again, welcome.  You've come to a great group.

Heather  

[Wobbly]

Hi..welcome to the forum, I'm in the same situation as you, I've been getting tested for the last two years.  Probable MS, still waiting for more test, MRI on my spine.  some of my results were positive or high..and some were negitive... so the Dr don't do much for me yet.  They say to wait 6 months and have another test.  While I wait in pain and wonder?  I'm on Celebrex for the inflammation and Tylnol 3, which doesn't help the pain that much at all.  Keep us informed and hang in there, your not alone.  Take care.

[Rena705]

Hello and Welcome to our site!  I am so sorry to see all the pain and frustration you have endured and with NO answers!  I can understand why you are worried...I think I would be too!

First of all I just want to remind you that we here on the site are not neurologists...we are merely people  that are trying to work together to better the lives of fellow people that are frustrated with all of this that is coming at all of us.

I just have a few questions for you...has your doctor done a full in-office neurological test on you?  Is the doctor you are currently seeing a Neurologist or an MS Neurologist?  

I don't understand why your physician is denying you a Lumbar Puncture...it could show other problems with the Central Nervous System than MS and it is a wonderful diagnostic tool...not too pleasant for us patients but hey...let's get it over with right?!

I would be concerned with the vision and balance problems myself in the search to find out if it may be MS and I myself don't understand why the physician would send to you the Movement Institute...did he give you any indication as to what to expect there?

The problem is that if your physician feels that it may be MS I would hope that he would also be aware that even if the disease is in remission, it is still active!  Therefore, if it is MS it would be to your advantage to have a diagnosis a.s.a.p. in order that you may be started on disease modifying medications.

It doesn't make sense to me my dear, that he is sending you to this "Movement Institute" without telling you why or what he may suspect.  The only thing that I would suggest is that you contact this physician and ask outright why he doesn't feel that it may be MS or if he is not a Neurologist or an MS Neurologist...find one right away!

As I noted before, if it is MS, even if it is in remission it should still be treated with one of the disease modifying meds as the disease is still active.

I hope that I have been able to give you a little help with your situation.  Please remember that we are here to support you all we can if you are angry, happy, sad, frustrated and we will listen and try to help.  I am glad that you wrote us and I would imagine a few more members will reply with there supporting ways!  Keep in touch and let us know your decision ok?  Stay well and best of luck!

Rena705