Upcoming Neurologist Appt

[Toomnyhats]

mnkitten, I am so sorry! Sounds like you found anther neuro who needs to be fired.

Personally, I wouldn't go back to him again. My perception is he isn't taking you, your sx or dx seriously. He thinks he knows more than a well-respected specialist?! I fear he will start calling you "sweetheart" soon ...

Truth harder to believe than fiction: not in MS world!!!

Hi sweetheart

Welcome to the same old stuff in here that happens to all sorts of people!!! You are not alone. You have me for company at least.

Sometimes I think I have ESP or something. Cause after reading your first couple of postings I had one psychic thought: "Quit taking all the medications".

Well of course I am well known on here as a permanently traumatized human by doctors. Or however you want to put it. So I ABSOLUTELY believe every word you have said. There are worse things i could say about doctors but have agreed to be "civil" on here.

It has long been established that neuros are weird. Enough said?

At this point the new neuro may be less stress producing than the old one and that is the important thing. One thing is from what I understand; your MRI almost must show lesions, etc., or no MS diagnosis. However as you and I both know: THIS IS NOT TRUE. For one thing there are different forms of medicine that diagnosis illness in different ways. Neurontrin and baclofen should not have hurt you much I guess even if you didn't need them. A lot of this MS stuff is guesswork and research stuff anyway.

Just to let you know like many on here, I have a very high I.Q. and do research faster than they can teach you to speed read. I type so fast that i outrun any computer. I have studied several forms of medicine such as macrobiotic; chinese; aryuvedic. The intermixing of the disciplines will give you an inner understanding of why you are sick if not a cure. That is my cure for MS or MS mimic disorders: intermix all the disciplines with psychic sensitiivty.

I think that is what you are doing here: realizing that it is up to you to sort through your symptoms; medicines; doctors and future. You have a son at a very important age. I got sick when my daughter was that age and couldn't walk or hardly move for some unknown reason. I have often been told my symptoms are either lies or craziness. I trusted my own I.Q. and ability to research and understand and now I more fully understand all these years of desperate confusion, illness and stress.

At the end of the road (I am 64 now) I can give you one peice of help: Do not go around doctors who upset you or make you stressed. i did that and I paid the price. I tried to go to the cheapest doctors possible and that was a bad choice: they were all too busy and ignored me.

It might not hurt to try geting off at least one of those medications and see what happens........Iam not advising you just wondering myself. I finally got off everything but Ibupofren and now I try not to take it either. I also try not to do other bad substances or chemicals (but I do anyway).
My theory is that brains can heal or reroute messages and nerves; organs can heal; lungs can function better in clean air and all the organs involved in immune system will work better with optiumum input.

This new doctor sounds very sure of himself and bold to contradict an established old diagnosis. I wonder what the date is on that MRI. What would a new one show?

Best of luck my dear and don't worry so much. The medications yu say you have been taking don't seem like they would have permanently damaged something and tapering off of them slowly is the way I got off of everything. The worse for me was Xanax or Klonopin withdrawal.

You're going to make it; I can tell by your excellent writing abilities that you are going to be up to the challenge of MS. But the challenge of teenage boys??????wooooooo

[Windwalker]

Are'nt you glad you opened that can of worms?

[mnkitten]

Are'nt you glad you opened that can of worms?

What do you mean? I'm confused...

[mnkitten]

Are'nt you glad you opened that can of worms?

Oh, wait....

I think I do understand your comment.

And yes, after all that, I am more confused than when I posted.

[0485c10]

I read with interest your entire thread, at least where you posted. I agree you need to find a different neuro but i had some concerns about that.

my first one is Tysabri is contraindicated for anyone who has had an anaphaltic episode to a med, which you had with copaxone. so tysabri is off the table with any new neuro you see.

the second one is beta is not optimally effective in you-so you should be open to trying something else with a new neuro. ([I]beta ships with the results of the trial data that they used to get fda approval-it took 1 year for a relapse on placebo and 2 years on beta seron( trial annualized relapse rate 1.31(less than a year to get 1 relapse) on placebo & 0.9(more than a year to get 1 relapse) on beta seron.

with your relapse rate of 3 in 2 years, it's closer to the placebo group.

So the researcher who was pushing tysabri was right in that you need to leave betaseron, he was wrong about were you needed to move too. Perhaps the new oral drug Gilinea or the soon to be out (now in FDA fast track status) oral Cladbrine? But something, just not tysabri or staying on betaseron..

the third one is not having an abnormal MRI really does cause a problem and may cause a problem with future neuros?

what is frustrating is not having a neuro to get more tests to confirm your ms damage without the MRI reports. I'm am uncertain if you will be able to get a new neuro to order these tests? Not sure which ones you already have in your file?

I'm think most about neuropsychological testing, which is suppose to be so detailed they can identify where damage in the brain is located. I don't think a general psychiatrist can do this, but a psychologist specially trained in neuro psyche testing & i don't believe its cheap. Might be worth it though, if you have the lack of an abnormal MRI hanging over your head.
are their abnormal spinal tap results is that in your file?
Or the VEP (visual evoked potential) test?
or EMG(electromylogram & nerve conduction study)?

Not that I have had any of these tests just read about them in posts-- have you already had these test? Are they in your file already? Can you get them in your file to substitute for the lack of an abnormal MRI?

http://en.wikipedia.org/wiki/Neuropsychological_test
http://www.mult-sclerosis.org/Visual...dResponse.html
http://www.webmd.com/brain/electromy...uction-studies


I know if I had the $'s, i would go for a neuropsyche test first.

how long have you been off betaseron now? not having a doc to prescribe it. perhaps it won't be that bad to go without treatment while you are looking for a neuro as bata effectiveness in you is closer to placebo than treated?

[0485c10]

And its acceptable to tell a new neuro you are unable to afford these new meds, even if you know that beta has not been optimally effective in you. maybe he can get you financial assistance?

[Windwalker]

Oh, wait....

I think I do understand your comment.

And yes, after all that, I am more confused than when I posted.

Sorry mnkitten, not exactly the words of encouragement you were looking for.

Your original Doctor was unprofessional to keep calling you sweetheart, but based on your post he was clearly frustrated. Doctors are human too. I feel you threw the baby out with the bathwater. I just cringe when people go down this path when they already have a clear Dx.

Hang in There mnkitten! Maybe if you re-examined the original Dx., what tests supported it, why the MS Dx was given, then you could find your confidence in it once again.

But to take Avonex, Betaseron and other Meds for so many years and then too have another Neuro. call into question that Dx...what the ????.

Your original Doctor was frustrated you would not take his advice and go on Tysabri. Was it a "hanging" offense?
You have a right to say NO!! His reaction to this was less than professional. If his calling you sweetheart was so upsetting that you want to change Doctors, I understand that. But understand you open yourself up to the kind of second guessing and contradiction you have already experienced. My opinion is that the more Doctors you see and more confusion you introduce to the situation the more B.S. your going to hear. Having said that, you need a good doctor you can feel comfortable with. Keep looking and you will find one but what are you going to hear next.

[mnkitten]

A HUGE thank you again to all who responded. After reading your posts and taking some time to ponder all of this, I am feeling much better and more confident.

0485c10 --- I have been off of the Betaseron for about 2 months now. My insurance was paying for it, so that wasn't a problem. I have abnormal VEP and EMG test results in my file. I also had an abnormal spinal tap....but it was years ago. The MS clinic I used to go to closed some years back. At that time, they offered patients the opportunity to obtain a copy of their records, otherwise they were going to be destroyed. I wasn't very smart and didn't want to pay the copying fee. I didn't think I would need them for anything. How dumb was that?! I feel foolish even saying it now, but at the time it didn't seem important. Now I realize how critical medical records are. The new neurologist that I saw last week was familiar with the closing of the old clinic. But having the records from when I was first diagnosed was critical to him.


kphirsh --- Your post made a lot of sense to me. I AM opening up a can of worms by searching for a new neurologist at this point. I have what I need right now. I think I just need to stand up for what I want/need at this time, and not be so passive. To question the 17 year diagnosis of a very well-known (nationwide) M.S. specialist after seeing me for only a short appointment, was absurd. To say that all of my symptoms were psychological in nature just isn't true. I know that. It has taken me years to accept that I have this disease and some limitations. I don't want to go backward in this area.


The neurologist I saw last week emails all of his patients a copy of his notes from the appointment. I liked that. I had to shake my head when I read them, though. One thing he wrote was something like "abnormal reflexes - L dorsal. Positive Babinski's sign - L. but questionable." He also said, "I did not conduct a complete neurological exam because I felt this patient was unreliable." That explains why he only did a quick, partial neurological exam.

Unreliable? In other words, he must think that I was just making all of this up, or what?

My plan is to return to my former neurologist. If he gets overly pushy about anything, I will tell him how much I appreciate his care and concern, but that I need some time to consider his suggestion.