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1752401 tn?1312136898

Why do I feel demoralized after visiting my neurologist?

Hello,

I am a 35 yr. old mom of three, hold a BA in English and love writing. Over the past 10 years I have had various "episodes" of what seemed like random and strange symptoms- vertigo. terrible muscle spasms, occasional migraines.

This year, I began having numbness and tingling in my face and scalp, which moved to my left foot. I began having severe bone pain and became hyper-emotional. I then started having frequent debilitating migraines, urinary frequency and exhaustion. I finally visited a doctor who said I needed an MRI of the brain and a neurologist.

I get the MRI and it shows three lesions. I see the neurologist who immediately discounts them as migraine related, never explaining what is causing the strange other symptoms I am having. My GP is the first to tell me about MS. It had never been brought up before in my past, and on researching it, I was stunned- STUNNED at the snapshot of my life to date.

I feel like every time I start to get back on my feet in life, the rug gets pulled out from beneath me. I had to beg my neuro for a spinal tap, which was just done 3 days ago. She said that it would definitively tell whether or not I had MS. It's not that I want to have MS, but I do want treatment if that is what I have, and I feel like this neurologist and insurance company is completely trying anything they can to avoid a diagnosis. The neuro even said if my next MRI showed 3 or 4 more new lesions she would still not diagnose.

So I am discouraged. My husband just switched jobs, though, which means in 3 months I will have a different insurance and can get a second opinion.

Any thoughts?

Thanks,
Becca
30 Responses
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1475492 tn?1332884167
Yes.  Say goodbye, Toto.

Are you ready now?


....Yes, I'm ready now.

Then close your eyes, and tap your heels together three times.

    

"There's no place like home.  There's no place like home.  There's no place like home.

"There's no place like home." ....

Helpful - 0
152264 tn?1280354657
Sarah: How about "neutrology"?--doctors won't commit to anything...

...and if they do, they take it back at the next appointment...

...and if they don't, the next doctor contradicts it...

...and if they don't, they tell you you're just too anxious...

...and while you're sitting there open-mouthed they send in the clowns and the flying monkeys and the Purple People Eaters...

... and then the whole building flies up into the sky and you land somewhere other than Kansas...

... and then you really ARE crazy! :)
Helpful - 0
Avatar universal
Maybe we should rename Neuro........."Neurology.......where the wild things hide?"
trying to throw a little humor in, know this is a serious problem.
Helpful - 0
152264 tn?1280354657
Good luck in finding out what's wrong, Becca. You have gotten lots of great info and advice here. Feeling demoralized after neurologist visits happens about 50 percent of the time, I'd guess from what I read here.

In complete contrast to your situation, I am definitely a migraineur but the doctors and radiologists always seem to be saying that my symptoms and my brain lesions are NOT caused by migraines. Yet they also say it's NOT MS--nor is it this, that, or the other thing. They don't know, won't say, and/or don't care to really explain anything. (12 years now, but I've given up.)

It's crazy out there in Neurologyland. I hope you find your way through it. :)

Nancy T.
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1752401 tn?1312136898
Good morning JJ,

I read an article about the MS and migraine link- thanks for bringing that up. I am not sure my doc is even aware of this research. She definitely treats the migraines as an alternative dx, even though I haven't had one in quite some time and continue to have other symptoms.

Thanks for the warm welcome :) I. too, am a mom- of a 3 yr old, 5 yr old and 12 yr old. I really get down sometimes thinking that they and my husband have to deal with a lemon of a mom and wife, but trying not to think that way.

I am on a journey to stay positive, and I think I've found the support I need here :)

Becca

Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Another welcome from me, and a recommedation that you have a read of our health pages, top right of your screen, the yellow icon. I'm sure you'll find some of them very interesting and helpful, always worth the time they take to read. :-)

I was a quite uncomfortable with the competency of your neurologist after this statement of "The neuro even said if my next MRI showed 3 or 4 more new lesions she would still not diagnose". It screems arrogance, and this alone would have me seeking another opinion, please dont ever blindly accept your dx, any dx if it doesnt answer all your sx.

It may or may not be MS but any dr that ignores sx and addition evidence that suggests that they got the dx wrong is in my opinion, bad for your health! btw a dx of migraine does not exclude anyone from additionally having MS, there are research studies that are looking at migraine possibly being another sx of MS because of the commonality in dx MSers. That doesn't mean if someone has a dx of migraine, they also have MS or visa versa just that a dx of migraine does not automatically exclude MS.

Anyway, welcome to our wonderful corner of the web!

Cheers..........JJ

  
Helpful - 0
Avatar universal
demoralized? seems a common thread amongst MS'ers or soon to be MS'ers

most of us here know this part of diagnosis all too well. we should each get a bonus check just for putting up with all that crap
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1752401 tn?1312136898
THANK YOU. This support has really been life-changing for me. I have learned so much already and am looking forward to getting more questions answered here. I can't express enough how much it means just to be validated that I am not crazy or worthless.

Becca
Helpful - 0
352007 tn?1372857881
Hi Becca,

Welcome to the forums.  You're in the right place for support -- there's no place like this for sure.

You'll meet a plethora of smart people who specialize in every aspect via education or experience who are very compassionate.

I'm sorry to hear of your frustrating story.  I do understand what you're going through, as do many here as well.

I don't like the fact that the Neurologist is treating you with such disrespect for your intelligence and your health.  To me, any doctor or nurse who is dismissive in your concerns of your health in any way, shape or form needs to find a new profession.   You don't deserve that type of treatment.

When you go through your spells which debilitate you, take you out from your work, interferes with your activities of daily living and goes through a course of ten years on and off and they shrug their shoulders and lazily say, "Its the migraines". Well then what about your other symptoms which migraines do not cause?  It's their lazy approaches that irk me and their disregard for your health.

Trust me, if it were them and they were taken out of their profession due to neurological issues, they would be at a doctor's office so fast and demanding what is going on with them it would make your head spin.  

As everyone states here, YOU are your best advocate.  YOU know when something isn't right and when lack of explanation of what your symptoms are and where your lesions stem from (other than the obvious Migraines) and not want to do anything else to investigate then to me, it is time to move on as you said you will do once your new insurance kicks in.

I wish you luck on the path of finding out what is happening to you and will get the answers and/or diagnosis you deserve as well as the treatment.

Again, welcome to the forums.

Lisa
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1752401 tn?1312136898
Thanks Dee.

I never knew I had the strength in me, but wow, it is so tough to trudge through all of these physical and neurological problems AND be your own best advocate to the medical world.

I feel for people who just give up, God knows there have been times I wanted to, but I always remember that that won't change the fact that these symptoms would still be there regardless.

Thanks for your encouragement and prayer- I believe in the power of prayer.
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Avatar universal
I can sympathize with you. I am going through the same thing. I have the worst neurologist! Just don't give up because you know something is wrong, and if not MS find out what the problem is. I have gotten really discouraged at times. It is really hard.
Don' t give up!
My thought and prayer are with you.
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1752401 tn?1312136898
Thanks Ann-

I hate the "chalk it all up to the migraines" theory!!!!

I am certainly thankful you shared your story, and I will be looking for a second opinion soon. Thanks so much again- hope you are feeling better,
Becca
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1752401 tn?1312136898
Thanks for your compassion Sidesteps and jensequiter- this whole forum has already worked wonders for my state of emotions :)

To answer your question about bone pain- I just get a deep aching pain that feels like it is in my bones- like when you have the flu. I have had spasms in my neck and foot, but this feels different and may be due to osteopenia but I'm not sure.

The propanalol has really helped my headaches, but like you, my other symptoms persist throughout my body. I hope and pray you find answers, and that we both carry favor with our neurologists henceforth. Looking forward to getting a second opinion in a few months. Gives me time to research a good neuro in Atlanta.

Be well, all of us...
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338416 tn?1420045702
It sounds to me that your current neurologist needs to be left by the side of the road.  I would definitely seek a new person, and get all your records from the old one.  Although looking at what you've said here, I doubt her notes will be useful.
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1475492 tn?1332884167
Hi Becca,

Welcome to the forum. I am sorry you are going through a similar experience. It's frustrating. I agree that it feels like they are playing a role - at least some of them. I attribute it to being a bit like ADHD to some doctors, there appears to be a bit of social stigma and maybe some doctor's thinking this is being diagnosed too often or maybe they think it is reassuring. I don't know.

I understand that it's difficult to rule out every possibility. My first Neuro really seemed decent but he wasn't sure what was wrong and didn't feel confident which lost my ability to feel confident. My symptoms presented atypically (myoclonus, twitching) though I'm not sure what "typical" means in MS and I am still in limbo.


I am also on propanolol. My last Neuro put me on it for my tremor's. She left my last appointment at increasing it thinking painless migraines were possibly causing my issues. They are helping my tremor's a bit but not my other symptoms.

What do you mean by bone pain? I get a deep aching some times. It feels like it's a spasm because it throbs.
Helpful - 0
1752401 tn?1312136898
I do have my records and a CD of the MRI. I plan on seeing a new meurologist- one that specializes in MS when my insurance changes in 3 months.

My neuro said last week that she just couldn't explain the symptoms I am having (numbness and buzzing in left foot, eyelid twitching, bone pain, body twitching), although I have never experienced these before, and my migraines are now controlled by propanalol and I haven't had one in a while.

She also doesn't seem to care that I had a devastating health crisis 10 years ago that took me out of the workforce completely and was never diagnosed.

It just all seems to point towards MS, which I hadn't even considered 10 years ago. I could be wrong, and hope to be, but I just hate the fact that this neuro isn't at all concerned about helping me figure this out.

I asked her if the current lesions could be causing my other symptoms, and she said she thought it was highly unlikely.

Inside, I just feel like they are playing a role, since this is all new to me.

Thanks for your response and encouragement~
Helpful - 0
721523 tn?1331581802
I had all 20+ of my lesions counted as migraine related for many years.  Finally I relented and gave in to taking Topamax.  I could not tollerate the side-effects but: I developed new lesions while I ws on it!  Proof was there.  Lately, my new Neuro said that the migrain lesions should only be in the cerebellem.  that most Neuros mis-read the old research.  Definately find a new doc!  
Ann
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198419 tn?1360242356
Hi Becca,

I'm sorry you were dismissed w/seemingly no explanations. No one should have to experience that.

While migraines can cause brain changes, and not all lesions are caused by MS, the doctor could and should have been willing to explain why you are experiencing those symptoms, i.e., numbness and vertigo.

Because MS is a clinical dx - not one test in and of itself provides a slam dunk dx.
Do you have all your records? So, like wildcat mentions you can bring everything for a 2nd opinion to this current docs? And, what is that opinion? He said all is from migraine?

Thanks for joining us - sure hope we can help,
-Shell
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Avatar universal
Could you describe what flexion of the neck you had?  
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1752401 tn?1312136898
Thank you all for your support and suggestions. I feel such relief knowing I have a safe place to voice my insecurities and get answers to questions. I really appreciate your concern :)
Helpful - 0
1312898 tn?1314568133
Hi Becca,

I'm so sorry to hear that you are going through all of this.  Unfortunately, the diagnostic period can be disheartening and demoralizing.  Having your symptoms blown off, discounted, ignored and minimized has happened to many of us here.  It's a painful time when you don't know who or what to believe.  

As hard as it is, you have to keep pushing for answers.  It's so painful I know.

I had doctors that tried to explain away mine as migraines too.  Problem was, I don't have migraines.  

This is a great place for support through this.

Red
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1748105 tn?1314473206
I was able to get a second appointment at a university hospital just by requesting it through their website. If you look at larger facilities, especially teaching or research hospitals that are affiliated with universities, it may be easier. When I did this it was covered by my insurance and I did not need a referral.
Helpful - 0
1745395 tn?1342061753
Most insurance do pay for a 2nd opinion, when I called and asked my insurance they stated yes and go have the other doctor bill for an office visit (meaning I would take my tests results with me, have them do the office exam) and get his or her opinion from what I already have.  Finding another doctor to have an appointment with can create a problem as most want a referral from the attending physician or it is hard to find another doctor that specializes in the area..
Helpful - 0
1752401 tn?1312136898
Wow- thanks. I will find out and try to get a cervical MRI and my next MRI of the brain on the 3T MRI machine- thanks so much!
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