Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
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.
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Usually I get a daily influx of emails on health topics. An article from Dr. Mercola really stood out recently though because it mentioned that fat cells have their own mitochondria. Not only was this the first I'd heard of this, he also mentioned that fat serves a purpose in our metabolism. Another new factoid for me. The bottom line for me was to appreciate that even our fat cells play a...
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I just do not feel well and I really think that it's because I cried yesterday on my way to work about my Aunt who is in the hospital. I don't think that we will have her much longer. She is very frail. Now she needs help eating. So, this is the third time in a year that I felt this way after crying. I think crying releases toxins into my body. I also worked up a sweat at the gym...
I hope you will continue to chat with us... you have so much to offer this board.
Please get another opinion.
Hugs,
~Lorrie
Lorrie, I will stick around, i like you guys and MS or not, fact is, I deal with all the same symptoms as you guys so... I at least get some great tips on how to deal with these issues.
I have been battling it all in my head. But I can't see things they way the neuros do.
The one said i did not have optic neuritis... even thought the optho, neuro and evoked response test said I did. He dismissed them all because it messed up his undiagnosis.
It all confuses me. This optic neuritis took away my career as a videographer.
I am starting to think... he was afraid I would file for social security benefits.
A doctor at Duke once told an MS patient... who ended up bed bound, that he was not diagnosed for over 10 years because he was going to drs in WV and surrounding states. He said, WV has a high rate of SS disability claims and they know if they say a patient has MS they might be depositioned to state so and they don't wanna mess with it.
Not sure if that is true or not, but I wonder.
I never inquired to any doctor about SS, but he agreed I had ON, but when he questioned my overall diagnosis... and mentioned all the problems, spasms, weakness and the ON... and said that the ON took away my career... he suddenly changed his tune and said the ON diagnosis was probably wrong.
IDK. Just feel like I have nothing to fight now. Just all these problems and nothing to fight against.
I will be back around more soon. Just in this funk and frustrated.
Thanks all for the love. It is greatly appreciated... and needed.
I had a very similar situation. After 3 years formally dx by neuro, I decided to try an MS Specialist. Urg... bad decision. First the guy tries to completely write me off and give me BS like you just described. Finally admits I do have MS, but refuses to give me anything except Copaxone (which I have tried and does NOT work for me plus causes atrocious reactions). When I tell him that i've tried Copaxone and it doesn't work for me, he basically says i'm just being a baby about injection site reactions and since I "don't care about my health" he won't either. Umm... WTF?
I went back to my neuro and have been getting excellent care ever since from her.
Long story short.. Some doctors get so numb by their experiences that they don't see people as people anymore. If you are not 100% disabled, you don't count. Don't let that nasty attitude beat you down. Find a doctor that CARES about you and forget that guy even exists.
made right decision 20 years ago. Basically after hearing a line of similar, confusing garbage from a neuro, I decided not to go back.
He was an overeducated, unsympathetic, arrogant (almost used another word beginning with (" A") man who said,
"I don't know what you think that I can do for you, why don't you go home & do your housework?." Left & never went back.
Over the past year there has been new info which shows that most of us with the DX of MS, actually have blocked veins. I was tested last Sept. & four of five of my veins were to some degree blocked. They call this CCSVI which can be resolved via angioplasty, as an out-patient. Check CCSVI.org online.
Many Canadians have been traveliling to New York to have this done as medicare is not yet funding, I hope it will soon be..
Guess what, this means there is nothing to be done by a neurologist. Stay strong & keep fighting the way that seems best to you.