Multiple Sclerosis (MS) Support Group
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I feel beaten down, kicked to the curb and put out with the trash.
I went to an MS specialist today.
I took with me a 6 inch file from the old neuro documenting my MS diagnosis and relapses.
He said I only have 12-15 lesions and they could be caused by migraines. No, I do not get migraines.
He said 1 in 5 people who get optic neuritis never go on to have MS.
I said... then why do I have muscle spasticity, to such a degree I cannot walk without muscle relaxers, why to I have tingling, bladder issues, burning sensation all over, weakness, fatigue, cobweb feeling, MS hug, slurred speech, dizziness, and cognitive issues.
Well, actually, I don't even think you have optic neuritis.
But my ophthmotologist said I did, he showed me the test where the blind spot was and then I had an evoked response test and it was abnormal.
He said that he did not trust the evoked response test. he thinks it was done by some guy who probably did not know what he was doing and is probably been fired by now.
Where the %$#@ did that come from? This test was 10 years ago, done 4 hours away. How could he assume that?
So, he said at most it was a mild form of MS... then he went on to probable MS, but he is leaning more toward not MS at all. Only about a 10-20% chance.
I said ok, then what do I have. I have all these issues, what is it?
He said he did not know, and there is no way I will ever know. That I should not go to another neuro nor any other specialist. That I would be wasting my time to find any answers.
He talked to me about my Avonex and Copaxone. At the beginning he said maybe the fact I was on them all this time kept me from progressing. But... because of that, he has to pull me off of them, so I can get worse to justify me being on them.
What the hell kind of thinking is that?
I started crying. I said I cannot live like this. I have no life. He said that I will be fine, that I will start being stable. I said but I haven't, for the last 10 years I have only gotten worse. He said, I would start being stable now and get all better.
How can he know or even say that? He does not know what I have.
He made no sense.
Every time I asked a question he gave an answer, a challenged it and he had to change what he just said.
Basically, come back once you are in a wheel chair. Then we can put you on medication.
He said my old neuro was a great MS dr and he greatly respected her. She knows her stuff. But with me she dropped the ball in diagnosing me with MS and in treating me.
He made it very clear, I should not see any other doctor to get a diagnosis. No other MS specialist, no doctor to check for other autoimmune diseases. He said to just leave it be and deal with it.
I said I can't deal with it, I don't have a life. He said I would if I was in better shape and exercised more.
I don't want to be in a wheelchair before they decide to treat me, but I guess I have no option.
He and my other bad neuro beat the fight out of me.
My old neuro that dx me left the state. So I can't go to her.
I don't know what to do. But, I guess I don't have MS... and all my symptoms can never be answered and I just need to be skinnier and all will be ok.
He said to have an MRI every 2 years. Why. I ain't wasting the money. I have lesions and it is not enough so why would more lesions mean anything. It will just be written off as migraines.
So, I guess I will leave here and go to a Migraine board to discuss the migraines I don't have.
I went to an MS specialist today.
I took with me a 6 inch file from the old neuro documenting my MS diagnosis and relapses.
He said I only have 12-15 lesions and they could be caused by migraines. No, I do not get migraines.
He said 1 in 5 people who get optic neuritis never go on to have MS.
I said... then why do I have muscle spasticity, to such a degree I cannot walk without muscle relaxers, why to I have tingling, bladder issues, burning sensation all over, weakness, fatigue, cobweb feeling, MS hug, slurred speech, dizziness, and cognitive issues.
Well, actually, I don't even think you have optic neuritis.
But my ophthmotologist said I did, he showed me the test where the blind spot was and then I had an evoked response test and it was abnormal.
He said that he did not trust the evoked response test. he thinks it was done by some guy who probably did not know what he was doing and is probably been fired by now.
Where the %$#@ did that come from? This test was 10 years ago, done 4 hours away. How could he assume that?
So, he said at most it was a mild form of MS... then he went on to probable MS, but he is leaning more toward not MS at all. Only about a 10-20% chance.
I said ok, then what do I have. I have all these issues, what is it?
He said he did not know, and there is no way I will ever know. That I should not go to another neuro nor any other specialist. That I would be wasting my time to find any answers.
He talked to me about my Avonex and Copaxone. At the beginning he said maybe the fact I was on them all this time kept me from progressing. But... because of that, he has to pull me off of them, so I can get worse to justify me being on them.
What the hell kind of thinking is that?
I started crying. I said I cannot live like this. I have no life. He said that I will be fine, that I will start being stable. I said but I haven't, for the last 10 years I have only gotten worse. He said, I would start being stable now and get all better.
How can he know or even say that? He does not know what I have.
He made no sense.
Every time I asked a question he gave an answer, a challenged it and he had to change what he just said.
Basically, come back once you are in a wheel chair. Then we can put you on medication.
He said my old neuro was a great MS dr and he greatly respected her. She knows her stuff. But with me she dropped the ball in diagnosing me with MS and in treating me.
He made it very clear, I should not see any other doctor to get a diagnosis. No other MS specialist, no doctor to check for other autoimmune diseases. He said to just leave it be and deal with it.
I said I can't deal with it, I don't have a life. He said I would if I was in better shape and exercised more.
I don't want to be in a wheelchair before they decide to treat me, but I guess I have no option.
He and my other bad neuro beat the fight out of me.
My old neuro that dx me left the state. So I can't go to her.
I don't know what to do. But, I guess I don't have MS... and all my symptoms can never be answered and I just need to be skinnier and all will be ok.
He said to have an MRI every 2 years. Why. I ain't wasting the money. I have lesions and it is not enough so why would more lesions mean anything. It will just be written off as migraines.
So, I guess I will leave here and go to a Migraine board to discuss the migraines I don't have.
Common sense tells me I have MS. I cannot deny it.
My previous MS specialist used the McDonald criteria or one of those... and that is what she based it on.
This one was an MS specialist. But, he said he was an MS specialist and thats all he did, so he knows for sure. But uh... so was my old one. So...
But the thing I keep going back to is, he kept changing what he was saying. It was like he was playing tennis by himself, back and forth.
And if he is so sure this is probably not MS... then why tell me to NOT pursue for any answers to my symptoms. He was adamant that I not look into it and find answers as to why I have vision problems and spasticity, weakness, fatigue, bladder issues, tingling and on and on.
Why? If he believed it was not MS would he not want a patient to go out and find out what it is.
I am dumbfounded.
He is gone. I see him no more. I am done with neuros at the moment.
I will go to my GP who is awesome and deal with my symptoms and go from there. I guess i will have to wait for my next attack. Idk.
Thanks everyone. I know I am not an unusual case. Many have gone through this. It is just so frustrating.
But I will fight on.
http://bunnyears.tumblr.com/post/3603125163/i-know-everyone-has-different-musical-taste-and-i
This seems to be a recurrent theme - our neuros are either gods or wankers (am i allowed to say that here?)
so there is no ms speciaist degree its just a general neuro who has chosen treat ms patients primarily.
i have a general neurologist, that i went out of my way to become a patient of hers...i'm happy with heer and would not switch..because of my partiailty to her, i like to think that she is a veddry smarft doc having to keep up on all neurological diseases, not just one. i have a lot of pride in her so be a litle forging of me thing my general neuro is bettee vthan an ms specialist.
everyone should feel that way about their doc.
but i've hasd 4 or 5 doc'sd before i got to her...and during that timed i zalways saw my doc as someone who had been raised by a woman & probably drove their mother up the wall with the stupid things they did as a child...it never pays to become too iimpresseed with a doc, even if they are impressed with themself---they were all raised by a womab and they all did inredibly stupid things a a child---keep them in p-erspective & fire this one.
I would also call you're states medical board and find out if the new doc has any dings on his record. You also have to keep in mind that some of what he said to you is not legal to say.
The best thing I can tell anyone to do on the first visit to a doctor is bring a tape recorder and use it. That way it is clear what is all said and no one can say I never said that. Tell them you are doing it so you don't miss any thing.lol
Fight back with every thing you have.
Remember that half the doctors graduate at the bottom half of the class and yours must have really graduated at the very bottom of the class.
Sounds like he does not know what he is doing. You can always go to www.ratemds.com and rate this MD and see what the others' ratings are. It is a free website.
Keep trying and you will find one that fits the bill. Sooner or later someone will be good. People in your local MS support group (if you have one and can go to one) can help you with all their experience with the local docs. In our group, we usually have the same things to say about each of the docs. If they are bad, they are bad to most of us.
But this one won't even accept my ON diagnosis. He never looked in my eyes or checked me out... but he just said the VEP was probably wrong that I had done 10 years before I saw him. How could he know a test was wrong when the tech and neuro said it was abnormal?
Anyway, I am done with him. I know what I know and will do what is best for me.
Thanks everyone for the feedback. I am also finding so many others around here who deal with the same thing and it is not until it is too late and they are in a wheelchair or can barely walk that they finally get diagnosed.
Sorry you have been thru this, but you will find another neuro that will treat you the way you need to be treated...I am now in a Neuro clinic that treats Alzheimers and MS and migraines that is all they do...makes me feel better..
best of luck to you and dont give up ever!!
A doctor cannot misdiagnose patients and put them on meds for the wrong disease, all while leaving the real sickness to worsen. I don't doubt you have ms, it's just that she knows and patients know that this mark on her record would be frowned upon. I think she'll want to at the very least clear her name and stick by her diagnosis. But most likely she'll help you because she knows it is what you need.
As federal law, a hospital is required to keep your medical records for I think 25 years or thereabouts. Both her and your current nueros can get access to them if you consent. Just remember that phones work both ways, and she can call your doctor as well. If she values her good name, I think she will. There would be no need to travel to Oregon. She still practices. She has already dxd you, no need for an exam etc. Her credentials are on the line and I believe that will put the fire under her ass. You said you liked her and that she is a good doctor. I'm sure she liked you as well, and definitely likes her paychecks to keep coming in. Not like she'd lose her job over it, but she'd lose some credit as a capable doctor if she turned her back on someone in this way. It is not out of the ordinary for doctors to call each other. I think she should at least be your first step in this journey....
Good luck, everyone here wishes you the best. Keep hoppin' along.