New Neurologist, most amazing!

It's been months since I've posted here and I want to tell you about my new Neurologist.  I hope it will give some of you who are in Liboland some hope.  
I went to Maine Neurology on Monday.  My new Neurologist is wonderful.  I've never been to such a kind and compassionate doctor before.  He was incredibly thorough and informative and he said that I definitely have MS.  He thinks that right now it is mild and that he is hopeful that it won't become worse, but that with MS being so unpredictable, one never knows.  He actually read all of my reports from the last neuro (very unfortunate experience) and went through the MRI's with my husband and me.  He said my MRI was far from normal.  He told me that I am in the 10 0/0 that don't show up on the MRI's in a typical way.  So, I am going back in July to have another MRI. (done correctly-the last two were botched)  I never said anything to him about the last neuro suggesting that 'I might just have a little Conversion Disorder (It's all in your head)' but he brought it up. He actually paid attention to the last neuro's report.   Before we left he said that when he teaches he tells his students that diagnosing patients is not a black and white affair, that there are huge gray areas that they need to learn to be comfortable with in medicine and that it ok not to have all the answers.  He said that many doctors in his field are black and white and when they don't have an answer, they tell the patient that they either have a virus (untraceable) or that it is their fault (Conversion Disorder).  He looked at me with such understanding that I wanted to cry.  
He said, and this was the part that really got to me, "I apologize on behalf of my profession for what that has done to you".  Can you imagine that?  A real live human being that is a Neurologist and has feelings and a compassionate brain?  My eyes still fill up when I think of this.  I told him how emotionally debilitating it had been to be told that I 'might be crazy' and that I hadn't been back to anyone for further testing for several years because of it.

I do feel a tremendous relief that something definite has been given to me and that I have a doc that I can work with.  It really wasn't new news, but a validation of what I knew already.  My previous doctor told me that I had age related brain spots and Ischemic disease, that all my symptoms were from that disease, and to take aspirin every day.  This new neuro says I have no such thing; that my symptoms have no relationship to that disease.  We had been discussing how my right side tended to go numb when the temperature got too hot or cold.  He also told me that because I had already been tested for other diseases that mimic MS years ago, that if it had been one of those diseases, I would have definite symptoms from one of them and since I don't it is obviously MS.  He talked to me about medication and that after my next MRI we would discuss it further.

So, now I have to figure out how to live better with the limitations of this disease-not that I haven't been trying to do that already.  It has all felt like such a terrible fight to be heard and I must say that it was a bit of a shock to have a doctor validate my experiences with such deep understanding.  I was a nervous nellie on the ride to Portland and staying positive was a huge chore.  I hadn't really expected this.

So, right now I don't know if I should laugh or cry or both.  I know it will settle in and I'll get used to the fact that I really do have MS, but that's going to take some time. I am going to look into alternative therapies for MS and see what I can find out that has worked for lots of people.  As I am so sensitive to most meds, I'm not sure MS meds are the answer for me, but will check them out.  So, to all of you who have been told you have Conversion Disorder or that you are crazy, or that nothing is wrong with you...don't give up hope.  There are good people out there.  This site has been a great source of encouragement for me and I am grateful that it is here.  By the way, my new neuro is very aware of this site.  Charley

[jed9999]

Wow! What a valuable experience you had for so many of us! I've had a MS diagnosis since 1973 so I have seen my share of neuros and met with the skepticism and predjudice we can be shown over the years. What a pleasure to run into someone who acknowledges just how much damage a doctor can do to a person looking for answers, and apologizes for his collegues! We are such fragile creatures, and this doctor has helped our cause so much! The fact is: we know what we experience in our own bodies!

You will get used to the fact you have MS. It is a manageable problem which you can stay on top of. Let me know if I can help at all. I care. Jane in Indiana

[Charley123]

Thank you for your support.  Even though my mother (92 yrs old) and sister (60 yrs old) both have MS, I still have a lot of questions and need support.  I am still a bit in shock, I think, even though I 'knew' what was wrong.  Finding this doctor, for me, was a bit of a miracle.  I'm not one to put people on pedestals, he comes close.  I have been thinking how lucky his students are to have him as their teacher.  Charley

[Sarahsmom46]

Thanks so much for sharing this story. It was very heartwarming as I was even getting teary eyed reading it.  I had a very similar experience as you had with a neurologist saying I had conversion disorder.  That was devastating.  Part of me wanted to believe him because CD is treatable.  Go to a psych and talk it out.  But the other part of me said "Julie, you're not getting off that easy. keep looking for answers".  

So, I finally had the courage to do what you did and get a second opinion. The second opinion was suggested by the CD neuro and he even told me who to go see - his former professor at a local well-known university neurology clinic.  This neuro told me almost verbatim what your new neuro told you.  

After his exam he said he knows MS when he sees it and that I have MS.  When later I switched to his care he said he would treat me as an MS patient for symptoms but not a DMD until I met the McDonald criteria or if he saw a new lesion show up anywhere (spine, brain, optic nerve).  

So, it looks like the both of us are finally in the care of a caring and compassionate doctor who looked at the suggestion of CD and said "phooey" and will treat us in a manner that will help and not hurt us.  Thank goodness for second opinions, or even third and fourth if that is needed.

Thanks again for sharing your beautiful story. We need to hear more of these from members.  

Be well,

Julie

[jed9999]

Well, this forum is a great place to be for support! Also it's incredible how many people offer advice when you have a question!

I wonder how your mother and sister are doing with their courses? Did they get diagnosed early or late? Is there any one else in your family with auto-immune disease?

I suggested to my longtime neuro once that patients would benefit if she just simply verified their feelings and she told me they'd have to get their affirmation somewhere else. It's incredible how hardended some people can get.

Do you think your main questions center around the uncertainty of what MS will do? I think that's usually the biggest stumbling block. You have to come to terms with the disease mentally, I think. Let me help you. Jane

[Charley123]

Julie, I did go to a psychiatric nurse who specialized in CD for years.  She was most comforting as she told me I most certainly did not have it.  I went back to my original doctor and confronted him about this and the neurologist he had recommended.  He finally admitted that he had often thought that about patients and that most of them turned out to have MS.  I told him I didn't appreciate being written off with that diagnosis and so that was the last I saw of him.
Jane, my mother had a lot of problems with it when she was in her 40's but the older she has become, it seems that the symptoms have become milder.  My sister was diagnosed when she was around 57.  She meets the McDonald criteria and has really severe fatigue, balance problems etc.  She has been living with us for 6 weeks and has been a bit help for me as I have trouble driving.  It's my right side that goes numb and I can't feel the gas pedal.  I think it's better if I am off the highways for everyones sake.  Mentally I am shifting between relief and depression.  I guess it will all settle down in time and I'll get used to it.  I've been living with symptoms for a few years and when my right arm began to shake and dance I figured it was time for another opinion.  
I don't really have a problem not knowing what it all will do in the future as I try to stay with what is happening in the present and deal with that.  I do appreciate being helped with this.  I've had a lifetime helping others and it's hard for me at ask, Charley.

[Heather3418]

You wrote......"After his exam he said he knows MS when he sees it and that I have MS.  When later I switched to his care he said he would treat me as an MS patient for symptoms but not a DMD until I met the McDonald criteria or if he saw a new lesion show up anywhere (spine, brain, optic nerve)."

I don't want to burst any bubbles here, but what this doctor said, contridicts what MS experts have been telling us for years.  If you have MS, then you should be started on a DMD right away.  The sooner the better.  You dont wait for an increase in lesions and more symptoms..

Your doctor says he "he knows MS when he see it and that I have MS."  If he is waiting for you to meet the McDonald Criteria, then how did he come to the diagnosis of MS?

I am not trying to be a real bit** here, Julie.  I am concerned for you.  July is a long time away.  MS is always active, whether it shows on MRI or not.  This is early April.  Your doctor is telling you to wait four months to wait for an MRI.  In the meantime, if you do have MS, it is doing damage.

I am worried about your doctor's comments.  I want to see you on a disease modifying drug in hopes that those four months are filled with a drug that may slow down the progression of this disease and hopefully PREVENT more lesions.

I am really sorry if I have offended you, Julie by talking about your Neuro like this.  What he says and how he says it, just doesn't make any sense to me.  As your Forum friend, I don't want you to waste four months of your life, where damage may occur, that you can never reverse.  I care...I really, really do.

Again I am sorry, if I have overstepped my bounds with my response to your doctor.

Heather    

[CheeserNurse]

WOW!!! I am still in limboland and hearing stories like this just brightens my heart and gives me hope and confidence that I will one day find a neuro who explains to me why I have these lesions in my brain and not dismiss me from his/her office saying "well, you could have had a stroke, it could be this, this, etc." I am very hopeful to hear stories like this.

What you mentioned, "He said that many doctors in his field are black and white and when they don't have an answer, they tell the patient that they either have a virus (untraceable) or that it is their fault (Conversion Disorder)." This is EXACTLY what my neuro. told me...that the lesions are probably from a virus, migraines or an underlying vascular disorder. I am only 22 years old, and cannot trace anything back in my lifetime to have a bad virus, migraines, or a vascular problem...it's ridiculous that he would just dismiss me, so I am in the process of getting a 2nd opinion, but I want to go to an MS expert, and not just a 'normal neuro.' In Indiana, there are not many around.

Best wishes to you!!!

~Aleah

[Lulu54]

Charley,
Its good to know you have been validated.  But I do have to agree completely with Heather in that waiting now is no longer an option.  Obviously you have waited long enough that the right side of your body is affected, and probably will be that way forever.  You really don't want to sit and wait to see what body part gets hit next, do you?

I was dx'd last year at age 54 and will have to live with the permanent problems I have because Ididn't recognize that I was ill for a lot of years.  When that dx came, the neuro made it clear that not going with a DMD was NOT an option.  There are too many unknowns about what can happen.

Anyway, I'm glad you found a doctor you like.  Now pick up the phone and call and get that MRI done sooner rather than later.  And while you're talking to them ask about your options to begin something now since you definitely have at least CIS (clinically isolated syndrome).  Please don't wait.

welcome to the club,
Lulu

PS - dear Neuro, if you are lurking out there and reading this, thanks for being kind and recognizing there are exceptions to every rule.  Now get busy and get this woman on a DMD to stop this MiSerable disease.

[jed9999]

I agree with everything you said. I hope Charley will be in a partnership with the neuro and decide together to fight this potentially virulent diease immediately! LuLu, you have a great attitude and give good advice. Who wants to  be in a cra- shoot about their bodies?
Jane--who played the odds far too long

[Quixotic1]

Oh, my....Than you, THANK YOU for sharing that whole story.  It touched me on a very deep level.  His honesty about what you had been through must have been an enormous gift to your soul.  I'm so glad for you.

I have to ask...when you said he is aware of this site, did you mean MedHelp in general or our forum in particular?  It is a private fantasy of mine that neuros read this, or that reading this is part of a learning rotation for med students or residents.

Dear sir, if you are out there, thank you for what you do and what you give.

Again, people, this is the very reason that I advocate doctor-shopping.  Not to get a diagnosis, but to find one of the fine physicians out there who will look at you, see you, listen to you and THINK.  I know they are around.  If they weren't there would be no point in telling people to search.

Charley, I hope you will stay with us and learn and help others.  Yours is one of the stories we need to tell.

My one question is the same as the others.  If there is a (near) certainty that you have MS, then why wait on a DMD?

Quix

[Charley123]

I think I was in shock when my neuro told me that I had MS. He said that he was certain that it was MS.  He did talk to me about getting on meds.  I've had such bad reactions to most meds that I've taken in my life that I told him I needed time to think about it.  He spent a lot of time talking about side effects and how other people deal with them.  It was difficult for me to digest it all.  I was a bit numb.
My mother never took any meds and my sister resists taking them as she has heart problems and some of the info that we have been reading suggests that some of the meds might be a problem for her.  I just don't know enough about them...but will take some time to research them.  I have minor heart problems too and don't want them to get worse, so I'm cautious. My concerns, I know, could be totally unfounded.  I do know that I need to do what is best for me and I don't always know what that is of course.  Having no trust in my previous neuro and former doc has left me questioning everything.  In my heart I do feel I can trust this new neuro, but that trust is a small voice right now.  I will talk to him about all of my med concerns when I see him in July.

I'm not getting my MRI until July because my neuro is that booked up.  He wants me to have it in the morning and then see him in the afternoon.  That felt like the right thing to do.  He did tell me that I could get it done sooner if I wanted to go to Bangor Eastern Maine Medical.  That is where I had the last two MRI's and they are the ones who botched both of them up.  So I just felt that I wanted to go to a place that he knew would do the tests right.

I'm not sure what he meant when he said he was aware of this site.  I too would think that his students would get so much out of reading what all of are going through.  It might just soften a few egos out there.  I will make a note to ask him.

Aleah, I do hope you will find an MS Neurologist.  Have you called the MS Society to get a list.  I think they have one on their web site.  When I got an appointment at Maine Neurology, I went to their site and looked at a picture of my new doc.  He has very kind eyes and I just felt that he was going to be ok...despite my nerves telling me differently.
I really feel for you.

All of this feedback is helping me get through a difficult week, thanks so much, Charley.

[sllowe]

I too want to thank you so much for coming back to us and for sharing this wonderful visit, with a compassionate Dr. who was willing to even go as far as apologizing for those in his profession who are not so worthy.

This experience should be read by all.  

I'm so happy for you Charley.  It's all inspiring to all of us and gives us hope that Drs like this are out there.

What a blessing.  All the best to you with your thoughts and decisions where the dmds are comcerned.

shell

[Quixotic1]

I am not aware of the four basic DMDs having affects on the heart.  One of the secondline drugs, Novantrone, has direct cardiac toxicity.

At this point I agree that trusting his advice is a good thing.

Quix