I am so stressed over this but probably shouldn't be
 

This doctor started out by telling me that he did not know my MS doctor and that he was not an MS specialist. He asked me why I had seen a neurologist in the area last year but had not stuck with her. I told him I just didn’t like her.

Truth is I was not satisfied with her answers.

He noted I had 7 children and asked WHY I had 7 children. I said because we adopted. He left it at that.

He looked through my chart and said I see you had ON last year and an abnormal VER. I would expect and abnormal VER with ON.

He wondered why I had not had an LP. I said I guess it was because the MS doctor felt I had enough other evidence of MS to skip
the LP.

He wondered what blood tests I had had. He checked my chart and saw I’d had all the tests he could think of but the LP. Kept coming back to the LP.

He started to loosen up some and said ok; ON twice in one eye, evidence of two lesions on brain MRI, and trigeminal neuralgia……He then started talking about Clinically Isolated Syndrome because my lesion load is not great.

Then he does a neuro exam. When that was done he talked about what he thought. He went back to the LP but said an LP at this point would not change the treatment plan. He said there were no other tests he would do. I asked him what HIS opinion was and he said MS and for sure CIS.

He said he did not need to see me again for 6-7 months since I am seeing my MS doctor next week. But I should call him if something like another bout of ON comes up because steroid treatment should have been used the first time.

I was so stressed. I hated going back and being grilled like that. I was so hoping the records I provided him would give him all he needed. It did really and in the end I just got a second opinion from another neurologist that I am being treated properly and it is MS.
I do not meet the MS criteria solidly because I do not have enough lesions, but I do have enough symptoms.

One weird thing he asked was what my grades were like in school and if I had ever been put in the hospital for psychiatric reasons. HUH? Is that a normal question? I am just grateful he did not grill me any further on the kids!

Another thing that bothered me was his saying there is no way he knows for sure all of these sensory things I say I have are for real. He said some times we think things like dizziness are bad when they really AREN’T so bad. I wondered what he was saying. I didn’t bring up any symptoms. He asked me if I had this or that and I answered yes or no.

So that is the whole ugly story. I had to stop and see my granddaughter to recover! :D

Gee, kinda like going to the Principal's office! But, you did get reinforcement that MS is your DX, so that's something. And, bet that visit w/the g'daughter cheered you up.

Hope your appt w/the MS Dr goes well, but let us know, OK?? :hug:

Aaaarghhh! Your visit with the new MS doc sounds awful! He doesn't even sound very human. :mad:

I just met my new neuro 2 days ago. She was okay I guess. At least she wasn't condescending.

Sorry for your bad experience. :hug: Grandchildren are great, aren't they? :)

i Must admit i would find a diff doc, his grilling of you was uncalled for, even if he was testing your memory. the question about shrink ward was totally uncalled for, although the last 3 yrs of being undiagnosed i too was told to go see a shrink, but still i see no reason for asking you the way he did.

from what you said it sure doesnt sound like he even wanted to listen to you

I know its easier said to find a diff doc but i must admit he would or she would not see me again

when the doc said why do you have seven kids i would of said cause we dont have 8

good luck in what ever you decide to do

Well, he sounded like a putz. At least he agreed that you have MS even tho he sounds like one of those doctors that think everyone is faking.

You have symptoms, and MRI, and two confirmed cases of ON, and TN...why would he really need an LP?

I'm not positive about this, and if I'm wrong, I'm sure someone will tell me. But, if you have at least two lesions, and more than two flares/exacerbations (the two occurances of ON and the TN) that are separated by space and time. Then, wouldnt that be enough to say it's MS?

I didnt have any obvious lesions...just a few white "spots/dots" on my MRI that werent indicative of MS and werent in the normal places you'd find MS lesions. I got diagnosed after having my first attack of ON, and then having my feet go numb, tingly, hot and cold and feeling like I had boots full of thumbtacks in them. It took four months between the ON and the numb feet...oh, and the L'hermittes that appeared a day before I got diagnosed. That's at least the symptoms that my neuro and other doctors observed. I had numbness in my right thigh several months before I had ON and saw a neuro for the first time. I guess they didnt count the numb thigh and hip, since they didnt see me for that. (I did see the PA at my regular doctor for it tho, so there was a record of it)

Even my MRI didnt show any lesions on my optic nerve, so they just had to go on what they observed when they looked at my eyes to diagnose ON.


What did that guy mean by saying that dizziness isnt bad? I've had vertigo a lot (probably my first symptom that I had) and it's the worst symptom of MS that I've had so far. He's apparently not ever had vertigo before, because that would probably change his mind.

Thanks for the replies. I am going to call my MS doctor and see what she has to say about this.

I should have said in the beginning of my message that I have an MS doctor who is a 3 hour drive one way.
She wanted me to find someone closer who would partner with her in my care.

The is the first neuro I saw hoping he would be a right fit. He said he has never heard of my doctor. :eek: She actually works for the MS clinic here in our state and the clinic is fairly well known.

Maybe he is new to the area. I do have some other options here. What a waste of money today was except for he did confirm for me that my MS doctor going in the right direction.

I just do not appreciate being looked down on because of our family size. My husband and I have been married 26 years. We gave birth to 2 children. Adopted 5 little children who needed a home.

We have been criticized and questioned about WHY we would do this by other people. Honestly if a person can not understand opening your arms and home to a child who needs a home then I don't understand them.

There are so many children who need families and not enough families willing to take them.

I didn't know I had MS before we adopted our children. If I had we probably would not have taken on such a challenge. Four of our adopted children have Down syndrome.

I am grateful we have our family. The future is kind of scary but things will be ok.....ok enough venting.

Thanks for the support! :hug:

LA:

ON has been my really major symptom too. The first time I had it my leg was really WEIRD. Now I have hyper reflexes and clonus in my weird leg.

I have had vertigo off and on. A few times it has been so bad. All I could do was lay face down on the floor with my eyes closed so I could not see the world spin.

He made that comment about being dizzy after he had me follow his finger with my eyes. I have ON and it was not an easy thing to do.


Oh, I feel so sorry for people who do not have a good MS doctor. I would be so discouraged if I had seen this guy before my MS doctor.

It is good to know you really are not crazy!

La

I think his questions were insulting!! Bravo to you for taking on the responsibility of 4 down syndrome children and others. I have taught down syndrome children and a very low IQ child with an aide.

Let me tell you I would prefer to teach them in a heart beat. They were so grateful for any help I gave them.

This doctor has no clue.

I have several cousins who were adopted, and they're my favorite cousins, so I like hearing about people who adopt. I dont see why that doctor had to interrogate you on the number of kids you have and why. What does the number of kids you have have to do with your MS?


It drives me nuts when a doctor or a nurse assume that vertigo is not a serious symptom. If the vertigo is bad enough to drop you to the floor or make you wake up constantly while you're sleeping...or keeps you from walking or driving. That's a pretty serious symptom.

About two weeks ago, I woke up with vertigo. Called my neuro and he was so ready to write me a Rx for steroids without even seeing me in his office. Only reason I didnt get the Rx was because I didnt want oral steroids, he didnt want to give me IV steroids, and we both kind of decided to see if it was being caused by the ON and not by some new activity somewhere else. It didnt last long at least. (ohthankgoodness!) I dont like the side effects of the steroids, so I'm glad I didnt take them.

I'm hoping to not have to take steroids too often. (only did them once, and that was for some pretty serious vertigo last year) But, if I ever get vertigo so bad that it drops me to the floor again, I'm taking the steroids however the neuro wants to give them to me. I'll take them orally, IV, or heck, even rectally if I have to. Anything to make the dizzies not bother me.

I just hate vertigo. Good thing the dizzies that hit me a few weeks ago were mild in comparison to previous vertigo attacks I had before I even knew about having MS.

As a nurse, let me tell you, this jerk was making judgements about you.

he was thinking you were NUTS for having 7 kids on purpose. That you were probably just seeking SSDI or some other sort of "hand out" (their opinion not mine) That you were a sympathy seeker, and doctor shopping until you found the one that you could force to agree to YOUR diagnosis.

Advice. RUN. Run far, Run Fast, just RUN. This guy is a jerk!

I want an MD who listens to ME! not to my chart. I want an MD who is kind, and compassionate, and not judgemental about MY life choices. Even if I paint my hair purple and have 12 earrings, and a tongue stud. (I dont btw) If I have so many children I have to live in a shoe. its NOT his business. Your disease is his business. He was a horrible man. I hope you run away.

:hug:

I am way too opinioned and I know it but I have to say something about how you were treated.

First, I want to tell you what a wonderful people you and your husband are. To give a loving home to children that would otherwise grow up in state home with out the personal love and attention that you are providing says so much about you. I resent that this Dr verbally abused you as he did. He had no right at all to treat you like he did.

Sometimes we are so shocked that we were treated the way we were that we do not respond promptly. It sounds like that is what happened to you. If he was having that bad a day, he should have rescheduled his patients and carried his ***** home for the rest of the day!

I was wondering why you need this guy anyway. If the MS Dr knows the treatment she would order, couldn't she work with your local Internal Medicine Dr if you needed to be treated with steroids? I know that is what I have arranged with the MS specialist that I go to in Atlanta. I do not see a local Neuro because they really did not think I had MS and would not review all that was going on with me when I was sent to them so my Internal Med Dr sent me to Atlanta to a MS Clinic and its about 1 1/2 hrs from us and I go there ever 6 months unless there is something going on then I am seen more often.

Ask your local Medical Dr if they are willing to work with the MS Specialist. I hate to think of you ever having to go back to that Dr. I know it sounds like I am taking this personal and maybe I am. I am just so tired of people getting mistreated by the medical community.

I certainly hope you will go to the rating site and give us a heads up on this dr so others can stay away from him if they are given a choice. The site is www.msneuroratings.com

Take care and again I say thank you for opening your home and heart to those precious children.

Thank you Thank you Thank you for that link!

I immediately went and posted about 2 neuros i have dealt with. This is awesome! I will add a book mark to be able to go back there.

:hug:

This is Andrea/Spooky's site, that I mentioned in another thread, but didn't have the link. Thanks Gam for providing the link..:cool:

That's what I was thinking also.
I get ALL kinds of "looks and questions" from Dr.'s about having 7 kids, even if they were planed from Dr.'s that are NOT my OBGYN's and if I'm "happy" with having all of them. :rolleyes: Most of them just tell me that having so many is too much stress for me. :eek:

God bless you Sweetie! Your kids are so lucky to have you and vice-versa! :hug: BTW, that doctor sounds like a dandy. :plain: JMHO

LA,

I still get angry thinking about that doctor asking you why you have so many kids.:mad:

You and hubby are so amazing to have all your babies and take little children who need love as your own.:) It's just wonderful and I know you love them as much as they love you.:)

The stress factor seems to play such a big role when doctor's don't know what is wrong with us. I had it from several Neuro's and one Cardio and a couple of PCP's over my long adventure with MS. They just don't want to admit they don't know so they make us question our sanity.

Thankfully, I now have a Neuro, PCP and Cardiologist that I trust completely. If I don't like a doctor, I move on the the next and it eventually works out.

Hang in there and you will find a good doctor. Just keep looking and don't settle if you can't feel comfortable and communicate.:hug:

that dr has no bedside manner. and no manners at all.

it is possible that a 2nd visit will be better. at least he knows you have MS.
on the other hand the idea of your current dr working with your pcp is a good idea.

Down Syndrome children are so open and loving.
you must have a wonderful family.
blessings to you.

Oh thank you. I want to respond back to your post but have had a crazy long day and will be back on the board tomorrow.

LA

He's obviously got some biases, which have nothing to do with compassion or empathy, but I can guess "why" he was acting the way he was.

He's probably one of those guys that doesn't give out a dx unless the person has 50 lesions, 9 O-bands, and is in a wheelchair . . .

He wanted to know why you weren't going back to the other doctor, probably because he wanted to see if you were out doctor-shopping for a dx. Your dx is not a slam-dunk in his opinion, although in the end he agreed it was at LEAST CIS.

I don't think his comments about having 7 kids had much to do with this . . . he just hates kids (women, dogs, and old people) and can't understand how anyone else could like them that much. :D

My neuro has a morbid curiosity about depression with MS. Every time I go in there, she hands me this 5 page questionnaire about "how I'm feeling". She never tells me what my answers indicated to her . . . but she doesn't offer antidepressants either so I guess I'm doing ok in that department.

I think the important thing, when dealing with any doc, is to find one who knows what they are talking about when YOU ask the questions. Otherwise, I just look at them a social misfits in life, and ignore their many quirks. :p

I wouldn't take it too personally, LA.

Cherie

[QUOTE=lady_express_44;306841]He's obviously got some biases, which have nothing to do with compassion or empathy, but I can guess "why" he was acting the way he was.

He's probably one of those guys that doesn't give out a dx unless the person has 50 lesions, 9 O-bands, and is in a wheelchair . . .
He was so stuck on the LP. But then decided I didn't need an LP because it would not change the treatment of Avonex and my other medications because he was certain that I had at least CIS. At the end of the appointment I directly asked him what he thought I had and he said "MS" so he must have seen something in my exam or the information in my chart was starting to sink in for him. But he couldn't keep himself from commenting that sometimes our sensory symptoms are not as bad as we think they are. Maybe he would like to run around with ON for a few days and see how he feels it affects HIS life.
He wanted to know why you weren't going back to the other doctor, probably because he wanted to see if you were out doctor-shopping for a dx. Your dx is not a slam-dunk in his opinion, although in the end he agreed it was at LEAST CIS.
(I wasn't sure what to say to that question. I thought I had made it very clear to him up front that I was there to coordinated care with my MS specialist, not for another opinion or to be grilled.

I don't think his comments about having 7 kids had much to do with this . . . he just hates kids (women, dogs, and old people) and can't understand how anyone else could like them that much. :D
You are probably correct! He was not the friendliest guy around that is for sure.

My neuro has a morbid curiosity about depression with MS. Every time I go in there, she hands me this 5 page questionnaire about "how I'm feeling". She never tells me what my answers indicated to her . . . but she doesn't offer antidepressants either so I guess I'm doing ok in that department.
Sometimes those none answers are worse than if they would just give their opinion. At least an opinion would let you know where you stand.

I think the important thing, when dealing with any doc, is to find one who knows what they are talking about when YOU ask the questions. Otherwise, I just look at them a social misfits in life, and ignore their many quirks. :p

I wouldn't take it too personally, LA.
I go to my MS doctor next week. I called to let her know what happened. I would be ok if I could just skip the local neuro and go to my PCP. I am going to see if that might be an option.

He would say something to me and then look at my chart and go OH. It would have been much easier for him and for me if had maybe looked at the chart before he opened his mouth.

When my MS doctor said she wanted me to find someone closer to home to see me if I needed something quickly I was worried.
I am not sure I can find a neuro in this area who has a good beside manner. Many of he people in my area do what I did and travel the 3 hours one way to get a good doctor. We do have some wonderful PCP's in this area but great specialists up here are harder to come by. I think a PCP might be more open to taking orders from a specialist. Seems like the MS doctor and neuro might bump heads a bit.

Yes, children with Downs are very sweet. They are actually very smart and can do anything any other child can do. We think we have a wonderful family. The kids are great. They are progressing and doing very well. At least three of them will be pretty independent.

They are very helpful around the house and love school. Our 11 year old daughter is reading, writing, spelling, can do most anything normal 11 year old girls do. She loves Hannah Montana and has a "boy friend" who lives right next to us. He is autistic.

I get offended easily when a doctor automatically assumes my health problems are caused by my children. It's just not correct.

LA

Thanks Becky. :hug:

LA

To me this is just like saying to someone that my broken arm hurts worse than theirs. Or my head ache is worse than anyone else's.
It is impossible to say what level of stress another person can handle because only THAT person really knows.

Some people would find 7 children stressful. But others see 7 children as a small family. There is a family on TLC who are on their 18th (I believe) biological child! To me that is amazing!

I was only able to give birth twice because of medical reasons. So in my mind giving birth 7 times is beyond my comprehension.

But anyway. Why do we all who have medical issues know one size does not fit all yet the more educated doctors think it all has to be by the book?

LA

Hi and thanks so much for your kind words. :hug:

Your suggestion just opened up some other possibilities for me.

My MS doctor wanted me to have a doctor locally who would be able to help with steroids or what ever might come up in between my check ups with her.

My PCP said he'd preferred I find someone besides him because he does not know enough about MS to feel comfortable. He only has 3 of us with MS. We are in a very small country community.

But there are other PCP's and internists around here. The neurologists in this area seem to be stuck on the same page when it comes to MS.

I was shocked when this doctor moved the conversation away from the reason I was there and started to add his own opinion. My MS doctor said NOTHING about our family size and I was not there for a second opinion.

I was afraid another neuro would try to throw their own opinion in on my situation. So in the end, after the trauma, he said it was MS.

Thank you for the link. I will go out there and post about the doctors I have seen!

LA