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233622 tn?1279338505

This is so frustrating!

Went to the neuro for a 3 month check up today.   He comes in and asks how things are going.  I pretty much tell him the same things I told him 3 months ago. Not much change.

He gets my MRI out and looks at it.  We had already gone over it 3 months ago.  He though he saw new  lesions but then the radiologist told him no.  

I thought this time would just be a check up but NO.  He came in and told me that my symptoms do not line up with the MRI.  I have ON, one 3mm lesion in my right frontal lobe white matter and some areas in my periventricular region that were not there 2 years ago.  

They did not call them lesions in the periventricular area but ubos.  That was what my 3 mm lesion was 2 years ago.  It has become larger.  But none of this is acknowledged by the doctor or his radiologist because, and I am only assuming because they have my previous films and reports, they were not done at THEIR center.  

I can't figure out any other reason why they would totally disregard the MRI's I have had in the past at another center.

So he starts in with your MRI is not bad enough to be causing your symptoms.  You can go off of your meds including the DMD.  "You do have MS BUT it is very mild and I think your symptoms are cause by a deep seeded psychological issue".  

He told me my clinical exam did not mean much.  He totally disregarded my swallow study that showed aspiration.  Told me that I should have no physical restrictions and that I should be doing everything every other normal healthy person is doing.

He told me to work off all of my medications and come back in 6 months and we will see what the MRI looks like.  Yet he still said I have MS.  

I told him I had been to a psychiatrist and he should have received a letter from him saying that I am perfectly fine mentally.  He said they could not find the letter.

I checked and the letter actually had not been sent to him....it HAS NOW!!  I have it too and not only does the letter say that I am not depressed and do NOT have underlying issues the doctor went on to say that there was nothing mentally causing the physical symptoms I am having.

I am so upset.  Now I have to find another doctor.  Why do doctors disregard tests that are done at other hospitals other than their own?  I decided I need to find a doctor close to home even if he is not an MS doctor.  

I need to use their hospitals and labs I guess.  This is just awful.  Glad my husband was there with me.

This doctor told me last time that I was one of the few people with very few lesions but a lot of symptoms.  He talked to me about PPMS.  I agree, I do have VERY few lesions right now but I have been on DMD's for two years!!  I started them about 7 months after my first bout of ON.  

Could they be WORKING?!?!?  Wonder why we are made to take these awful shots if they are not going to keep us from forming new lesions?

I am just a mess about this.  I still have a diagnosis but feel pretty chewed out and like an idiot.  He made me feel like I was faking.  I asked him how a person would fake aspiration during a swallow study.  I am sure he did not like that and I am not one to read a symptom and then develop it all of a sudden

I don't have every symptom.  He told me swallowing troubles only occur in advanced stages but it says right on the MS society web site that swallowing studies can occur at any point in MS.  I have a dud don't I............shoot!!!!.  I thought this was a good doctor.

I know what I need to do, I just need an ear to listen and understand and tell me I am right.  

36 Responses
233622 tn?1279338505
Let me start over.   I had MRI's from 3 years ago and 1 year ago.  The one 3 years ago showed ON and a ubo in my right frontal lobe.,  The radiologist said it was demyelination.  The neurologist said it was not.

So I went to an MS specialist who said the UBO was demyelination and that along with my clinical exam he could dx me with MS.  He started me on Avonex.  He decided to retire last year so I had to find a new neuro.  This new guy is not an "MS" doctor.  We do not have any around now because two of them retired last year.

So I went to the new neurologist who wanted all new MRI's on HIS machines read by HIS radiologist.  He totally ignored the previous MRI's and radiology reports.  Hope that makes more sense than my other post.

New guy does not disagree with MS dx but does not think I should be having the symptoms I am having at this point.  So what, I am faking it so I can give my self a shot??  And take these meds that have totally shot my bed room life and added to my weight gain issue?
560501 tn?1383616340
You have got to be kidding!!!!!!
I am so sorry that your appointment went to "Hell In A Handbag"!

Can someone please answer..Is there really such a thing as "Mild MS"????
I mean either you have MS or you don't!  Am I right Quix?   Someone??
I feel for you. I really do!

Well you certainly need to LEAVE that neuro with a quickness!!!!!!
How long have you been on the DMD?  

Quix, how can a doctor dx someone, start them on DMD w/ other drugs, then just say......"Oh never mind, you don't have it?"

Again, I am so sorry for you terrible, horrible, no good doctor appointment.
your in thought and prayer.

233622 tn?1279338505
Hi Tonya,
Thank you.  I have been on DMD's for 2 years now.  In fact it was 2 year ago this coming Monday I was dx'd and have had steady progressing since.  
338416 tn?1420049302
There is NO SUCH THING as mild MS.  Mild or benign MS is only determined after death.  So this neuro is chock full of something... probably not goodness or knowledge.

I have only one 'clinical' lesion - in other words, although I had several areas of enhancement on my MRI, only one lesion was looked at by the neuro.  Most of my white spots were ventricle enhancement, or UBOs.  But I have, and have had, a lot of symptoms.  It seems like people with a lot of lesions have few symptoms, while people with few lesions have more...  but that's just my impression.

So you definitely have a dud.  Why do neuros want to diagnose you with psychiatric problems when they're so unqualified?
233622 tn?1279338505
I don'at know but I can tell you I am sick to my stomach and in tears.  He told me to come home and hold onto something and walk on my heels and toes.  I can't.

I told him I can not even get up on my toes. He just shrugged.
378497 tn?1232147185
First, I'd file a complaint about this doctor and cc him. Second, I'd find a new doctor.

Well, maybe not in that order, but both of those things would be on the list.

In the complaint, I'd note the following
--this doctor is so behind on the data in his own profession that he's basically engaging in malpractice and endangering his patient's health, to wit: the incorrect assertion that lesions should correlate with symptoms in any way--been disproved repeatedly; the assertion that you have "mild" MS, which is not a clinical entity; his assertion that you need to get off of the meds that are helping you, based on faulty "reasoning"; his attempt to attribute your symptoms that are indicative of a disorder you HAVE to a disorder that you do not HAVE.
--this doctor is apparently incompetent to practice medicine, given the conclusion he has drawn that your MS symptoms are not attributable to MS but to "psychological" issues when you in fact have been evaluated by a professional and it has been determined otherwise
--this doctor needs to be sued for emotional damage and distress

I'm sorry this happened to you. But someone needs to know how poorly this man practices "medicine."

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