Aa
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.
LA
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.
LA
Thank you JJ. Lexapro is what I was put on by the MS doctor. I started to clinically progress and he changed me to Prozac. Not good.
So the psychitrist I saw said no to Prozac and put me on Welbutrin. That made me too anxious so this new neuro had me go back on Lexapro. Big weight gain after starting medications 2 years ago. :-(
LA
So the psychitrist I saw said no to Prozac and put me on Welbutrin. That made me too anxious so this new neuro had me go back on Lexapro. Big weight gain after starting medications 2 years ago. :-(
LA
COMMUNITY LEADER
Why are you on a Atypicle psychotropic drug? Lexopra is FDA approved for sitzaphrenia(sp) or bipolar 1, its used off label without any science behind it. Have you read the horror story i posted about serequel and the issues with the prescribed replasement drug lexopra? Have you by any change been putting on some weight?
Just from my own research it apears that these types of drugs can them selves cause movement disorders, it might be worth checking out if you really need such a strong drug, especially if there are other alternatives. I'm no dr as you know, but if you google Lexopra you'll see why i'm saying this, it alone should be food for thought!
Its now 3am here, slept hours today so thats why i'm up, but i'm not sleeping right, my clock is wonkey lol I'll do some research tomorrow (oops later today) and get back to you. Your on a pretty low dose of lexopra but i still cant work out why you'd get put on this drug, its definetly off label usage and over perscribed. leave it with me and i'll find out if the meds could be causing you more problems, well i'll try anyway.
Cheers......JJ
Just from my own research it apears that these types of drugs can them selves cause movement disorders, it might be worth checking out if you really need such a strong drug, especially if there are other alternatives. I'm no dr as you know, but if you google Lexopra you'll see why i'm saying this, it alone should be food for thought!
Its now 3am here, slept hours today so thats why i'm up, but i'm not sleeping right, my clock is wonkey lol I'll do some research tomorrow (oops later today) and get back to you. Your on a pretty low dose of lexopra but i still cant work out why you'd get put on this drug, its definetly off label usage and over perscribed. leave it with me and i'll find out if the meds could be causing you more problems, well i'll try anyway.
Cheers......JJ
If you weren't next door in Indiana I would guess you are wrapped up with the NHS quagmire in the UK. I didin't think we have benign MS over here! LOL
I still say WTF!?!?
No, please do not stop your drugs. He provided you no plan to come off of them - I am not an expert on any of these but I know enough though that you may have to titrate down your doses to safely avoid withdrawal. I don't see anything out of the ordinary on your drug list or any large amounts. The baclofen is a relatively small dose. Rebif and flomax are ordinary doses. I don't know enough about the other 4 to speak about them. Someone else here I am sure can help.
Do talk to your PCP and find another neurologist. Go in prepared with the information on treating ms, even if it is *benign* and help your PCP to understand the significance of this approach. The odds are your PCP will not be educated on this topic and you will have to provide the schooling.
I am still shaking my head over this one ....
feel better,
Lu
I still say WTF!?!?
No, please do not stop your drugs. He provided you no plan to come off of them - I am not an expert on any of these but I know enough though that you may have to titrate down your doses to safely avoid withdrawal. I don't see anything out of the ordinary on your drug list or any large amounts. The baclofen is a relatively small dose. Rebif and flomax are ordinary doses. I don't know enough about the other 4 to speak about them. Someone else here I am sure can help.
Do talk to your PCP and find another neurologist. Go in prepared with the information on treating ms, even if it is *benign* and help your PCP to understand the significance of this approach. The odds are your PCP will not be educated on this topic and you will have to provide the schooling.
I am still shaking my head over this one ....
feel better,
Lu
I have 10 lesions. I was dx with 7 or 8 lesions 10 years ago, and my Neuro told me that it was benign – benign not it the way that you would think normally, just that is was going to be a slow process – follow?
Fast forward to now……..I now have another 3 lesions on my spine. The major one being on the T10 – hence the reason I am hardly able to walk at all. Totally numb from the waist down, burning sensations 24/7, and really very painful.
My second opinion back in October with another Neuro was wondering if I had MS at all because of the lack of lesions!!! Needless to say I gave him a right rollocking for this:))))) and so he back tracked a bit quick:/
So in a nut shell, I have benign MS – because of the lack of lesions – even though I have constant double vision, unable to walk and urinary retention etc.
My Professer (first Neuro in France) wants me Tysabri ASAP, BUT the local Neuro is wondering if it’s MS or not. My premier neuro in the UK is now retired, but he dx me within a month even though I didn’t have the required ‘X’ amount of lesions.
It just goes to show how these Neuros have so many differences of opinions.
Can you not insist on remaining on DMD’s??
Debs xxx
Fast forward to now……..I now have another 3 lesions on my spine. The major one being on the T10 – hence the reason I am hardly able to walk at all. Totally numb from the waist down, burning sensations 24/7, and really very painful.
My second opinion back in October with another Neuro was wondering if I had MS at all because of the lack of lesions!!! Needless to say I gave him a right rollocking for this:))))) and so he back tracked a bit quick:/
So in a nut shell, I have benign MS – because of the lack of lesions – even though I have constant double vision, unable to walk and urinary retention etc.
My Professer (first Neuro in France) wants me Tysabri ASAP, BUT the local Neuro is wondering if it’s MS or not. My premier neuro in the UK is now retired, but he dx me within a month even though I didn’t have the required ‘X’ amount of lesions.
It just goes to show how these Neuros have so many differences of opinions.
Can you not insist on remaining on DMD’s??
Debs xxx
JJ you got it!!! Even though my muffled attempt to tell you all what happened. I was just so so upset and could not help myself. I just needed a good sleep and some advice from friends.
He said I DO have MS but it is "mild". He told me I have too many clinical symptoms for having just one lesion and ON. I've had ON twice.
My main issues are my vision and my walking. The other major one is aspiration.
He was so weird yesterday. He said if I were aspirating I would have pneumonia all of the time.
I happen to be an expert in that area having had two children with aspiration problems and one on a feeding tube.
Aspiration does NOT mean it is traveling all the way into the lungs although it is getting into the airway. Now if there were PENETRATION also that is the biggie.
That would mean it is getting down into the lungs and pneumonia would be a real issue. However even with my little one who had aspiration with penetration she never developed pneumonia. She was eventually placed on a feeding tube. So he was dreadfully wrong with this issue. I wanted to educate him but decided he was not worth my energy.
It is so confusing that he wants to take me off DMD's when I have a stable MRI just to see if it starts to show something in 6 months.
So if it does show something in 6 months what kind of disability will I be left with?
My pshyc report says I have a mild adjustment disorder related to making life adjustments to my MS diagnosis. It says I am not depressed and have no other mental issues and no history of them. Which is TRUE.
It states that DMD's can cause depression so an antidepressant is being used prophylactically.
The psyc I saw said adjustment disorder does not cause the type of physical symptoms I have.
This doctor wanted me to walk on my heels and toes to exercise. I can NOT even get up on my heels or toes. He had a stupid smirk on his face. My husband was there and he was getting angry.
I think I am going to make an appointment with my PCP to see what he suggests at this point since he is the one who found this doctor for me. My PCP has known me for 20 years now and he knows I am stable. I am not an attention seeker. He knows I am really bad about going to the doc when I really should and that I have always been reluctant to take medications.
Anyway, should I stop my Betaseron or keep taking the shots? Should I really try to work off of the medications that are helping my symptoms? He told me I am on too much for not having the lesions I "should" have.
Here is my list
Betaseron every other day
Gabapentin - total 2100 per day
Flomax
Clonazepam (klonoptin) 10 mg per day
Oxcarbazepin 300 mg twice a day
Baclofen 40 mg per day
Lexapro 10 mg
Is that a lot?
They are helping me. Doctor said I still do have MS even with the stable MRI. What does he WANT???
My husband said he notice on the wall of the room that the doctor had started a new study with MS patients and he thought maybe I did not fit into the right typical MSer.
My husband said he felt like we were basically being shown the door and he really did not want me back.
The only thing I can think of is maybe his nurse was upset with me. Back in October when the doc talked to me about my MRI, when he thought he saw lesions in my brain stem, he talked with me about PPMS because I fit the bill.
So I called the nurse and talked to her several times trying to find out if the doc had talked to the radiologist and come to a conclusion. She got upset with me. I suppose I was being to bothersome to her. You know it was only an MRI and PPMS we were talking about, why would I be calling her about that?! Not a nice lady.
Well, if you made it to the end of all of this thank you so much for the support and suggestions.
I do have MS. Mild according to the doctor. Too many clinical symptoms to all be related to MS according to the doctor. So, now I have to start another doctor search.
LA
He said I DO have MS but it is "mild". He told me I have too many clinical symptoms for having just one lesion and ON. I've had ON twice.
My main issues are my vision and my walking. The other major one is aspiration.
He was so weird yesterday. He said if I were aspirating I would have pneumonia all of the time.
I happen to be an expert in that area having had two children with aspiration problems and one on a feeding tube.
Aspiration does NOT mean it is traveling all the way into the lungs although it is getting into the airway. Now if there were PENETRATION also that is the biggie.
That would mean it is getting down into the lungs and pneumonia would be a real issue. However even with my little one who had aspiration with penetration she never developed pneumonia. She was eventually placed on a feeding tube. So he was dreadfully wrong with this issue. I wanted to educate him but decided he was not worth my energy.
It is so confusing that he wants to take me off DMD's when I have a stable MRI just to see if it starts to show something in 6 months.
So if it does show something in 6 months what kind of disability will I be left with?
My pshyc report says I have a mild adjustment disorder related to making life adjustments to my MS diagnosis. It says I am not depressed and have no other mental issues and no history of them. Which is TRUE.
It states that DMD's can cause depression so an antidepressant is being used prophylactically.
The psyc I saw said adjustment disorder does not cause the type of physical symptoms I have.
This doctor wanted me to walk on my heels and toes to exercise. I can NOT even get up on my heels or toes. He had a stupid smirk on his face. My husband was there and he was getting angry.
I think I am going to make an appointment with my PCP to see what he suggests at this point since he is the one who found this doctor for me. My PCP has known me for 20 years now and he knows I am stable. I am not an attention seeker. He knows I am really bad about going to the doc when I really should and that I have always been reluctant to take medications.
Anyway, should I stop my Betaseron or keep taking the shots? Should I really try to work off of the medications that are helping my symptoms? He told me I am on too much for not having the lesions I "should" have.
Here is my list
Betaseron every other day
Gabapentin - total 2100 per day
Flomax
Clonazepam (klonoptin) 10 mg per day
Oxcarbazepin 300 mg twice a day
Baclofen 40 mg per day
Lexapro 10 mg
Is that a lot?
They are helping me. Doctor said I still do have MS even with the stable MRI. What does he WANT???
My husband said he notice on the wall of the room that the doctor had started a new study with MS patients and he thought maybe I did not fit into the right typical MSer.
My husband said he felt like we were basically being shown the door and he really did not want me back.
The only thing I can think of is maybe his nurse was upset with me. Back in October when the doc talked to me about my MRI, when he thought he saw lesions in my brain stem, he talked with me about PPMS because I fit the bill.
So I called the nurse and talked to her several times trying to find out if the doc had talked to the radiologist and come to a conclusion. She got upset with me. I suppose I was being to bothersome to her. You know it was only an MRI and PPMS we were talking about, why would I be calling her about that?! Not a nice lady.
Well, if you made it to the end of all of this thank you so much for the support and suggestions.
I do have MS. Mild according to the doctor. Too many clinical symptoms to all be related to MS according to the doctor. So, now I have to start another doctor search.
LA
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