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.
Please take a day to rest and then go out and find another doctor. It sounds like this arrogant guy didnt get HIS meds today. You need to be the best you that you can...dont give up on YOU!
Find another doctor, yes, maybe you do not have it...maybe you do. I have not been 'formally' dx in like 25yrs...some test + some -. One doctor says no...migraines made lesions ( I DO have hx of migraines in the past) and another (my PCP for 30 yrs) has always had that in the background of my file...as he thinks I do have it. My point is, you never know...but do find a doctor who you feel comfortable with. Autoimmune stuff is soooooo iffy that its hard for even the smartest doctors to know all about !!
I will pray for you and hope that you have brighter days ahead.
Now, when I arrived in his office for my first visit, I was already using a wheelchair for long distances. He dxed me with a pinched nerve in my neck. I questioned him...are you POSITIVE? Because it was hard to believe it was "just" anything. His answer was he was positive. My husband and I..after visiting so many specialists over the last six years, fell for it.
When I lost the use of my dominate hand, I got angry enough to find another neuro. We waited four months to see her. She examined me. The following morning I had an MRI done of my brain and spine. We knew by noon it was MS. The following day I was in treatment for IVSM. The following week a spinal was done that showed eight 0 bands.
The old neuro did run MRI's but on a 1.5MRI which didn't show any lesions on my spine. With a 3tMRI, I lit up like fireworks. I have but one small lesion on my brain.
I regret today giving up the fight for a real answer. A lot of damage has been done to my body. i beg you not to stop. Keep looking until the dx makes sense. I don't care if it fifty different neuros. It is your body. Trust what it is telling you.
in it is says that more and more people are being diagnosed with ms after an mri that was done for reasons other than suspected ms, has lesions in it. the most common reason for getting an mri when ms is not suspected is headaches & headaches are not thought to be caused by ms--but perhaps that fact has to be re thought given the proof that is happening.
and it says that no doc should ever advise AGAINST getting a second opinion, if one does that is the biggest reason FOR getting a second opinion...
http://www.mscenter.org/images/stories/Diagnosing_MS_article.pdf
That's what my Neuro. suspects in my case. Plus he thinks that I get Migraines when I get Seizures from the MS. Some MS patients (like 5%) get Epilepsy as a result of the neurological damage of the MS.
Another main thing I get from the MS (that's rare, but can go hand in hand with the MS Epilepsy) is "Cerebellum Ataxia" (where any of your motor functions start becoming uncoordinated...from speech, to movement issues, to tremors)...plus all the "fun" symptoms of MS in & of itself.
But hey...To end on a positive note...I've really found that having all this makes me truly take stock in what really is important in life...people you love (not things) & it helps you slow down & appreciate things more, I feel. I appreciate when I can finally get the energy, strength to do something with someone I care about & love. You relish it cause it's a few & far between thing, you know. Hugging your kids, your husband, wife, daughter, son, etc...means more now a days because yesterday or even 2 seconds ago, for example, you could barely walk, you were in so much pain or your body was so frozen & shut down on you & in a seizure you are glad you are anywhere but where you were 2 seconds ago. The pride you feel in that accomplishment of making it through a day like that is one that no healthy person could ever imagine & the understanding when someone else is struggling to make it across the street & no one picks up on it but you & you both look at each other & just know is like an instant bond that you relish, cherish & in a bittersweet way don't want to be part of the secret club that no one else knows about but us.
It's late! I'm tired!...I'll just say that's why I'm sentimental..."YEAH! That's the ticket!" HEHE!
Take care,
Stay sane!
It took me 5 neuro's before I found the right one. I evens aw the dr. that Michael J. Fox saw for awhile and he was so busy and uninterested in chat I had to say that I left him and went to another and another.
I love and adore the one I have now and I would travel across the world to see her if I had too!!!
Good luck, there are other neuro's in the sea!! Marti
You really do not need this right now and change your Dr. and get another opinion from a real neuro Dr.
Please do not leave this site yet, wait until you have your answers.
Take care tarabunny and just know who is behind you. (:
I agree with everyone else here, that you need another opinion, if I remember correctly, this was a second opinion...so, go get a third, fourth, or fifth; if need be.
At the very least, you need a compassionate, caring and understanding doctor, that is willing to find out the reason for all your symptoms.
FYI....I do have migraines, and my inital MRI showed 10 atypical lesions, more consistent with migraines. But, my clinical signs and symptoms pointed to MS, and I therefore was dx. My neuro thinks my lesions are due to MS, even though they are small atypical, more like migraine lesions. There are good neuros out there. Please keep looking!!
It hurts. It sucks. But if anything is true many symptoms will teeter out. As my dad says "this too shall pass"
It may pass but I will never forget. I am sure that God did not make me to take this lying down and neither should you. I am here!
I had a baby born early and sat in on doctor's rounds every day for months only to see that treatments and medical opinions of each doctor not only differed but were opposite much of the time. Also, huge mistakes were made, by doctors, that will have lifelong consequences for my son. That experience taught me once and for all that doctors don't have all the answers, that they are biased, and sometimes downright incompetent.
Doctors are just like any other person you might hire. You have to find one you like and respect that you feel believes and respects you. Are you able to find another doctor? If you can, or can't, I would recommend trying to bring an advocate with you, to stand as a witness for you and to speak up for you when you need help. Also, maybe a doctor who might be bold enough to mistreat you when you are alone would be less likely to be so rude (and crazy) with someone else there. I did that once and it made a difference.
I have insurance that will allow me to see one of two neurologists. I actually saw one of them years ago when we lived somewhere else... he was very unimpressive and unhelpful at best. We just moved and I have yet to see the neurologist here. I am going to really push to see the other doctor... because I am sort of terrified of what will happen with my MS management if he is in charge. It would be awful if he began dismissing my diagnosis entirely! I guess we all know that what you endured is possible for some of us, depending on the competence, compassion, character and and maturity of the doctor we are lucky or unlucky enough to see.