Throwing in the towel.......for now

[jessie438]

I would first like to thank everybody who has been kind enough to answer my questions the past few weeks.  If you don't mind, I have one last rant to get off my chest concerning doctors ;)

I saw my third neuro yesterday after asking my PCP to give me a new referral.  The last neuro I saw was a nightmare.  Come to find out when I met the new one yesterday, that he is buddies with my last neuro. Crap!  The last guy made me feel like I was lying or imagining all of it.  So I'm sure that was written in his notes.

The reason I say I am throwing in the towel is because I have reached the end of my rope emotionally.  I can't take any more of these doctors telling me there is nothing wrong with me.  

The events of yesterdays appointment:

1) Doctor tells me my brain lesions are way to small to be MS (my largest was originally 8x4mm).  

2) He tells me my lesions didn't enhance brightly enough to be MS.  Mine enhanced in a "subtle way".  "MS lesions are ALWAYS VERY BRIGHT!"  I would have no idea if this is true or not but he didn't offer up any ideas as to what diseases WOULD cause subtly enhanced lesions and seemed angry when I asked, saying they are just normal brain matter.  Also I have read that when using the MS protocol, one must wait 20 minutes after contrast has been injected to start the scan again.  Mine was started immediately.  Also, if the contrast dye actually reaches the brain, doesn't that mean the blood brain barrier is open?  And from my understanding, that is NOT normal.

3) I mention that on my recent MRI, they did not use MS protocol and used a 1.5T machine.  He interrupted me mid sentence and angrily says "it doesn't matter the strength of the machine, MS lesions will ALWAYS show up on MRI."

4) Doctor tells me my lesions are probably age related, same thing my last neuro told me. He goes on to say that this is a normal part of aging starting in our 50's.  Wait a minute!!  I'm only 43 and the lesions were first discovered when I was 41.  Then he says "well they must be due to migraines", for which I have never been officially diagnosed and have never taken prescription meds for.  Then he says it is probably birth control pills then.  I have never taken birth control pills and I don't have high blood pressure.

5) He says that the numbness/tingling and pain in my left leg and foot is probably due to a bulging disc in my lumbar spine.  I tell him that I already had a MRI of the lumbar and they found nothing.  He still wants to repeat it.  But later in the conversation he makes some backhanded remarks that I think were meant to make me feel guilty for allowing all of these expensive tests to be done on me over the years.

6) He tells me that the numbness in my left cheek is impossible because the ONLY cause could be the trigeminal(sp) nerve which has three branches and all three branches will always be affected, not one.  Only the middle portion of my cheek is numb.  I am not familiar with the trigeminal nerve but I do know that the numbness in my cheek is NOT impossible because it is there!

7)  Doctor tells me not to worry because "you are healthy and you exercise"  I tell him "actually, I don't exercise at all because of the fatigue".  He gestures to my legs and says "you're thin, of course you exercise!"  At this point I am about to cry because I can't believe the things he is saying to me.  Its like a bad dream that I can't wake up from.

8) So we move on to the exam.  He spends about 6 minutes examining me.  He has me walk about 4 feet and turn around.  "Good" he says.  Then he has me sit and he checks my arm reflexes. I don't feel any reflex. He says nothing. Then my knee reflexes.  They seem to swing out pretty far and he accuses me of "making them swing out too much".  On to my feet for the plantar reflex which he performs with me sitting up with my feet hanging over the table.  Not sure, but I thought the patient was supposed to lay down. No response from my feet. He proclaims my exam perfectly normal.  It very well may have been normal, I don't know because I am not a doctor but I would have expected him to spend more than 5-7 minutes on the exam.  

9)  Doctor says my symptoms of unilateral numbness/tingling, pain, paresthesias, muscle spasms, and strange headaches (headaches that feel like they are shooting pains just under the surface of my skin) are NOT MS symptoms.  To have MS you would have to have a major neurological event such as blindness or complete paralyses in one or more limbs for 24 hours or more. Ok, I say, but I have read many stories from people with MS that have had similar symptoms as I and they DO have MS.  He says he wouldn't believe anything he reads on the internet, and I should stop trying to self diagnose.

To top everything off, I recently asked to see some notes from a doctor I saw at a spinal clinic a year ago.  He wrote that I have hypothyroidism and that he has diagnosed me with a hypersensitivity disorder of unknown origin.  I turned to my PCP and I said "First of all, that guy NEVER told me I was diagnosed with anything and do I really have hypothyroidism, because nobody ever told me that either?"  She says "not that I know of, lets take a look at your blood work"  She looks at the numbers and tells me they look perfectly normal.  I am wondering now what other inaccuracies there are in my medical records.  I have requested copies of all of them

I think I would have been alright with him telling me its not MS if he could actually tell me what it IS!  So to make a long story short, I am going to wait for that "major neurological event".  These doctors are making me feel like an idiot……a crazy idiot.  

Thanks for listening :)

Jess

[Jifr]

This person was a neurologist? Like, with a degree from an accredited school that hands out degrees for competency???  Are we absolutely certain that he wasn't a stand in?....One of those guys who only play a doctor on TV???

Something is more than a little bit wrong if he truly made some of those comments to you.  Wrong enough to warrant a request for a peer review or make an official complaint or ....I don't know WHAT you can do in this situation to make sure that someone KNOWS they have an incompetent person out there!

:-/

I'm so sorry to hear about your struggle.  I hope there's a good doctor out there for you somewhere!!

Jen

[karryon55]

Ahh I don't know how that got there....lol. It should say "I am with you on that one". Sorry. :-)
Karry.

[karryon55]

I can also totally relate to wanting a break from finding the cause of your symptoms. I did take a time out after my first Neuro appt which was a total disaster. He told me what I didn't have before he examined me or took a history from me. I switched off from the very beginning.

This first Neuro appeared to have made up his mind before I had even seen him. He was lazy with the examination & did not take much history from me. He really couldn't be bothered. I believe in this kind of situation that you just don't take on board the rubbish they feed you.

Read the Health page "the lies my Neuro told me" because it will make you laugh & you will be more prepared for the next time. I found this health page great for my self esteem as well.

The next Neuro I saw was carefully chosen. I was more interested in a Neuro who didn't bark at me but started from the beginning & ordered the appropriate testing. To be honest by the time I reached this Neuro I was so dysfunctional & many of my problems were quite obvious to him from the onset. He was kind & thoughtful to my poor speech & communication at the time & with his gentle nature....put me at ease. I think this is important because if you are on edge all the time because you have a crabby Neuro barking at you....the outcome is going to be altered as you are guaranteed to have emotions involved.

Take the time out. I am to talk with you on that one. Just never give up.

Take Care

Karry.

[Dagun]

Wow, we must have the "same" neuro! But I thought mine lived in Iceland...
I went to mine a week ago, and it sounded a lot like this and just a VERY short exam. But I have not had an MRI for 2,5 years now and I last saw him more than a year ago.

My first/only MRI had showed something that he said could be because of my age (42 then), so I get how you feel, I´m sorry that you met "my neuro" :) and I sure hope you find a better one for your next visit! But I agree it is often good to take a step back and take a rest from this, it is SO exhausting. We end up doubting our self's endlessly.

My best wishes for you,
Dagun

  

[jessie438]

JB- I'm so sorry for what you have gone through!  It sounds horrible and I hope you can find answers soon.  It boggles the mind why some of these doctors are so dismissive.  Unfortunately, it seems to be a very common theme

Jess

[johnniebear]

I relate  to your story,    I'm found more support and answers here on this forum.

          Here's my post about the very same concern..


http://www.medhelp.org/posts/Multiple-Sclerosis/physically-and--psychologically-exhausted-with-my-ms-specialist-/show/2024826#post_9566695


take care
JB

[cbackh]

My neuro specialist  said I see you have thyroid problem and no insurance I answered yes that's right so his reply  was these test are very exspensive its probably just the thyroid  so go home and come back when you have insurance  go home. Literaly the man never even examined me in any way spent less then 4 min in office paid $800.00 and still no help. primary dr says I have all the indications of having MS so try looking stuff up online to get some answeres cause its not her area of expertise. Realy gotta love the DR and yes I'am in the process of finding a new primary DR.

[jessie438]

Thank you all for your support!  I was nearly brought to tears when I read all of your thoughtful and caring responses.  

doublevision1- None of the neurologists I have seen have been MS specialists, just general neurologists.  My PCP had told me the second one was a MS specialist but turns out he isn't.  Yes, this doctor did seem very agitated by my questions and that I had already done my own research.  

TLC_31- lol!  is Portland known for bad neuros?  If so, it would explain a lot ;)  I'm happy to hear you have not had blindness or paralysis!  

Jw534-  How the heck would that doctor know for sure if his allergies were worse than yours?  Not to mention I have never heard of post nasal drip choking anybody.  Like I told my daughter after my appointment "I guess you don't need to be smart to be a doctor these days"

aspentoo- So happy to hear you found a doc you like :)

SarahL2491- Thank you for the great advice!  I think a break is the best thing for me right now.  It's really hard to not obsess over what is wrong and how to fix it when I have daily symptoms.  I also would be willing to drive a long distance to see a doctor who would actually listen to me and also know what he's talking about

Joiedecour- I requested copies of my records last week.   I wish you luck on your journey too :)

Lulu54- Thank you for your words of encouragement and for confirming that he is in fact a dufus!   It really helps to hear it from others because I start to feel like I'm crazy sometimes.

Corriel- Best of luck to your friend and I hope a break will do her some good

Milliepede- It sounds like you have found a neuro that will work for you if you are willing to travel to see him :) I wish the third had been a charm for me too.  I have been to both Providence and OHSU but neither doc was a MS specialist.  I'm starting to think that is the real problem.  I just don't understand why they seem so uninformed.  When I told him I had small burning, stinging sensations on my legs kind of like bee stings only bigger, he looked at me like I had two heads and said "I have never heard of such a thing".  Maybe not, but it's still an abnormal sensation that needs to be investigated in my opinion.

supermum_ms- Thank you!  You gave me a giggle!  I find it astonishing and disheartening that  this seems to be such a common problem with doctors in general and not just neurologists.  Why do they all think their patients are crazy or depressed or anxious?  I have had anti-depressants offered to me on several occasions which I have refused because I'm NOT depressed, I'm annoyed!  Do they have a pill for that ;)

[supermum_ms]

I sooooo do not know where to start, i can't think of any thing he said that was in fact accurate .................Liar Liar pants on fire!

Your neuro reminds me of the neuro who told me.....'there are NO visual sx's in MS' and this little pearl of wisdom 'psychologists don't always recognise psychological issues', far too many - OMG he did not just say that - moments for me to mention. I had some where around 5 clinical signs in my neuro exam, test evidence etc but gosh gee golly finding out my 'mother' had bipolar 5 minutes into the assessment, just completely wiped 'me' out from that moment on, hmmmmmm i probably didn't need to even be there. lol

Believe me, I totally understand the self preservation-al need to throw in the towel, I really get it and think anyone who's experienced similar would understand where your head is at but please don't wait until a "major neurological event" (!!!) Please, just take a brake and give your self time to get beyond the emotional back lash of dealing with idiotic medical opinions.

And then, when you feel you are ready to step back in, get this roller coaster your on, correctly named once and for all! Lets face it, if it is MS the clinical and test evidence will be mounting regardless of those questionable medical opinions but please don't ever give up on doing right by YOU.

Hugs............JJ

    

[Milliepede]

Jessie, I can empathize . I went through two neuros and wasn't sure of this third first time I saw him.

I live in Silverton and travel to Providence St. Vincent MS clinic. There's also OHSU MS clinic. Unless these are where you met doofus.. Ergh - perish the thought.

I agree with others: about erroneous statements and about taking a break and trying to see someone else when you're up for it.

You deserve to know what's going on.

Blessings on your dx journey. Karen

[Corriel]

Hi Jess, I found your post very timely since a woman I work with just told me the other day that she was taking a break in her diagnostic journey after her frustration started to lead to more frequent symptoms.

At some point I think it is helpful to take a step back and adjust.

As others have indicated the horrible experiences you have had with neuros is both rude and totally lacking in compassion.

I truly hope you can find an open minded neuro and try again so please keep track of symptoms and I hope you keep in touch.

Corrie

[Lulu54]

Ok - there were so many things you wrote in your post that I was going to commment on, but others have already pointed out the errors in the thinking.  I am also willing to say without a doubt he is wrong, wrong and wrong again in his thinking.  Whata dufus.

Some of what he said are so wrong, they belong in our ongoing post about Lies My Neuro Told Me ...

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lies-My-Neuro-Told-Me/show/1265?cid=36

I know it is only Tuesday, but I think it's time for a Friday night neuro roast. I'm with Sarah - take a deep breath, take a break to regroup and then when you know the time is right, try the next doctor.  

It's not in your head - well, it probably is in your head but in a very real physical way.  Don't doubt yourself.  hugs, L

[Joiedecour]

So sorry!! I can relate to your frustration and parts of your experience. Just wanted to wish you luck from a fellow stuck without answers after testing person. I would suggest getting copies of your reports. I have been told on two occasions that my results are normal only to find that there are not 100% normal or even close - eg for brain lesions passed off as 'MRI normal for age.'

[SarahL2491]

take a break.............MS is a slow moving train..............get some rest and research, you need a MS specialist and ask him to evaluate you WITHOUT seeing prior notes from anyone.................if he will, then you have a good neuro..................these guys are full of it..........

blood has to get to your brain, so when they inject it in your veins, yes, it circulates to your brain.........it also leaves your system rather quickly, so does no harm.

ONLY new lesions are BRIGHT................egads you got into some dumb neuros.............

It took me 7 hard years to find a good neuro and he was referred by someone on this forum.  He is also 465 miles away and I gladly drive it because he is so good.  He spent an hour examining me.  I went thru 4 idiots so I understand your frustration, one told me I had alzheimers.

Relax, keep a record of your symptoms when they happen, this can be quite helpful and just take a vacation from this, and then look for someone who specializes.  

[aspen2]

I am so sorry.  I had the same very humiliating experience with my first ms neuro.  I left, in tears, vowing to NEVER do this again.  (We share similar-sized lesions, btw -- definitely too small according to every neuro I've seen).

Thankfully, I had one more referral, which I was going to refuse to go to -- two friends, my hubby and my doctor basically made me.  I felt sick going.  He also said my lesions were too small ... but he was kind, did a very detailed neurological assessment, found stuff that was abnormal, and ended with, "Your mri does not scream ms BUT there is definitely something going on and we had better find out what it is."

Yup.  Cried again. Must.Stop.Doing.That.  But the difference between what our first experiences were and this gentleman (truly) have been night and day.  I was so relieved to be l listened to.  He restored my faith in neuros.

[Jw534]

Your experience sounds similar to mine. I have only seen one Neurologist but he is really strange. He dismissed every symptom I had with some lame excuse and when I mentioned I had about 6 days of difficulty swallowing and that I would wake up in the night choking and difficulty starting a swallow he said "I have had that before from post nasal drip and my allergies are worse than yours" no joke!

Needless to say I totally empathize with you. I'm about at the same point. Pretty sad to wait for something really bad to happen to get help. Hang in there. Your not alone!

[TLC_31]

I had to wonder, where do you find a dimwit neurologist like this? So I look where you’re from … Portland?!?

The line about the “major neurological event” is mind-blowing. I have never had blindness or complete paralysis in a limb for 24 seconds, let alone 24 hours. Maybe I don’t have MS?

Too many other zingers in your post to comment on them all. I agree with his sentiment that people should not try so hard to self-diagnose, and I first misread your sentence as “he wouldn’t believe everything he reads on the internet.” Good advice. Except on further inspection, he says to not believe “anything.” This guy knows he stinks and is scared people might finally figure it out.

Perhaps you may not have MS. But there are many good doctors in Portland to help you sort that out. This bozo was good at one thing … treating you like crap.

[doublevision1]

Well that must have been a very surreal experience.

Were any of these neuros an MS specialist? I ask not because I necessarily think you do, but because it could be a possibility (based on the info above) and clearly at least this last guy is very misinformed.  I wonder if he lacks confidence in his knowledge and felt threatened by your questions and comments. It makes no sense to me why a doctor would speak angrily to a patient and let their emotions be so stirred up ..... and by what exactly? I don't get it.

What he told you in 1, 2, 3, 6 and 9 are untrue. I'm not a doctor and I'm 100% confident in saying this, mostly from personal experience as someone whi IS dx'ed with MS.

His responses as per 4, 5, 7 and 8 are presumptuous and/or evidence of poor listening and not paying attention. Again,  I'm 100% confident in saying this, mostly from personal experience being a human being.

I understand your reluctance to see yet another neuro.....but if you can get in with a good MS specialist (ask around), it might be reassuring one way or the other.