the results are in

[ack65]

Okay, back from the neuro and I don't even know where to start.  He read the mri report provided by the radiologist to himself in front of me so he obviously did not view the mri himself.  He then tried to say there was nothing of significance.  I said my GP had read the report to me weeks ago and it said T2 Hyperintensities in the white matter,  He then said there were non specific and small and most likely due to age! and migraines.  I asked how migraines caused my bladder urgency or my legs to seize up or my lack of balance.  He said he's not a urologist - really?  I don't think he's much of a neurologist either.  

And that was going to be it but my DH started to ask what then could it be if not ms?  He doesn't know but is pretty positive it isn't ms.  Then he said "you don't want ms" and my symptom's didn't fit with ms - the very symptoms that made him request an mri to look for ms just the other month.  Interesting.

Of course I don't want ms but I do want to know what is wrong with me.  He then went on to say pain wasn't a symptom of ms and that the symptoms don't come on for a day or week and then subside?  Really?  I wonder if he has ever read anything about ms at all.

What upsets me the most is that because I don't fit the classic description of anything he can think of then that's all he can do.  This has happened at most of the specialists I've seen and there never seems to be any one interested in finding out what it could actually be.

So I am feeling it is time to just give up on the idea that I will ever know or even get any help.  On my way out he said that I could get another opinion - he wouldn't be insulted.  I am so glad I waited until April for this great revelation of knowledge.

So to summarize, there appears to be no cause for my symptoms and no dr who can figure it out.  The rheumy took away my fibromyalgia diagnosis (she thinks its neurological) so I am actually further behind than I was before because at least with the Fibro they would give me lyrica for the pain.

That's all I can do tonight.  My eyes hurt so bad I can barely look at the screen. Anna

[ack65]

Thanks again for the out pouring of support.  I am open to the idea that I could have a variety of medical issues.  What disturbs me is that since he can't find any evidence of ms that's the end of it all.  Certainly he could explore other neurological problems such as AN, TN... but he basically said he has no idea why I am having these symptoms so does't think he can help me.  Not even any idea how to manage the symptoms.  Of course he said I could get a second opinion - but I'm not sure I even got a first opinion.

So I have booked an appt with my GP for Friday.  I was ready to just give up but then I see how upset my family is and read what many of you have been through and I know I must move forward.  

I'm still mad at myself for getting hopeful that there may be answers or that this would be the dr who will try to figure things out.  It's just so draining dealing with the frustration and disappointment over and over while still having to cope with my symptoms but I guess many of you know that first hand.

I am sure glad I found this site and all of you!  Anna

[supermum_ms]

OMG!!!!!!!!!!!!!!!!!!!!!!!!! What a ninny of a dr, i cant think of anything beyond ignore everything he said, its not worth your energy, please find someone else and keep your spirit up!

Cheers......JJ

[Nancy T]

"You don't want to have MS."
"I'm not a urologist."

Wow, these statements are so RELEVANT, so HELPFUL, such GOOD arguments for why you don't have MS. <--- dripping sarcasm

My previous PCP once gave me the "You don't want to have MS" line. Yeah, wanting to find out WHETHER you have MS = you WANT to have MS. Makes perfect sense.

I'm sorry this neuro was so unhelpful and clearly so ill-informed. He must be an old dude who can't do anything but parrot the discredited old sayings such as "there's no pain in MS."

That said, if you don't have clear MRI evidence of MS and/or clear signs found on exam (such as bad reflexes, abnormal eye movements, etc. etc.), you may not get a diagnosis even from a good neurologist.

Whatever you do, INSIST on treatment for your worst symptoms, the ones that are interfering with your life. They have to treat your symptoms even if they can't determine the cause.

Oh, something similar happened with my first neuro (second, if you don't count the one who didn't even give me any opinion): he all but told me at my first appointment that I had MS--EVEN THOUGH he'd already seen my report of a normal MRI (though it was done to look for a hearing-nerve tumor, not MS), and then after a new MRI showed only a few little nonspecific spots, he acted as if I were a hypochondriac for asking further about MS.

Isn't it weird how symptoms of MS are no longer symptoms of MS after an MRI?

Sorry you got such a loser doctor.

Nancy (11 years undiagnosed)

[biowham]

Gaaah. That comment about the pain? Practically malpractice. If you've got the time, energy, and wherewithal, I'd send to him some of the recent papers noting the frequency with which people who have MS report pain. I'm sorry it's such a pain to get a second opinion...can't say what other avenues of resort you've got there.

Like Karen said, get a copy of the radiology report and the image CD.

Bio

[Karen99]

the Neuro said "every one has pains here and there" to.

Good grief and bleep bleep bleep.

Try to get a copy of the radiologist report for yourself and CD of the images.

Hang in there.

[daisy.girl]

Sorry for all your going through.

Have you talked to your GP about what you are going through and what the neuro has said? Maybe if your new GP can see that you are not getting any better, she will request a new neuro consult herslf.

Best of Luck and God Bless

[ack65]

Thank you everyone! for all your support and kind words.  I know I need to find another neuro but unfortunately in Canada it just isn't thst simple.  I already switched GP's in Dec because my old one refused to send me to any more specialists.

I have to admit I am a bit scared to ask my new dr for another referral in case she does the same thing because there are no other GP's close to me taking new patients.  I only got into see my new GP because my DH sees her DH and asked if she would take me as a patient.

So I guess it may be time to just accept there may not be any answers.  Right now my GP upped my amitryptiline to 40mg for pain and gave me T-3's.  She did not want to start Lyrica until the Neuro gave his opinion so I'm not sure what she'll do now.

Of course this doesn't address my vertigo, lack of balance, fatigue, shaking hands, or numbness and tingles but I have been living with them so long and have managed so far.  I hope Lyrica helps with the stabbing face pain that the Neuro said "every one has pains here and there" to.

Thanks again for your support it really means alot to me. Anna

[cainer]

I  am  so  sorry-  these  drs.- not all  but some -r-  a  joke!!   and i  to  was told the same thing      in fact  -quote-    you dont want it to be m.s.- do you?   lol    as  if  we want it-  urgg!!
  i say   feet  dont fail  me  now-  and  run  and  get  another  one!!

wish  you  well    tick

[lovemy6monkeys]

I am so sorry! My first neuro did pretty much the same thing. I know how tough it is to not feel that your doctor is going to try to figure out what is going on. Like everyone else said, I believe you need to "Pull a Donald Trump" on this dingbat neuro and tell him "You're FIRED". I hope you find a new doctor quickly!

((hugs))
~Jess

[LATW]

I am so sorry.  I have been through the same thing recently.  Try not to be too discouraged and do not give up.

LA

[PastorDan]

Yeah, what everybody said!  What a {insert derogatory term of choice here}!  Did he go to school with my first neuromaniac?

I pray you get better answers from someone soon, someone who comines knowledge and concern.

[Karen99]

Sorry for the know-nothing Neuro.  

I do not know of any neurologist worth his salt that doesn't look at the MRI themselves.  A surgeon does not rely on a written radiologist report, or any specialty for that matter.  If they do, they are lazy and a waste of our time and money.

Seek out a good primary care physician so you can be treated for your pain.  Do you have one?

[Wobbly]

I would run and find another Neuro... I agree with what the others say and I myself have been in your situation... it took over 4 years and quite a few MRIs to see changes... and neuro exams...and neuros... to get a Dx.. of MS..

hang in there and keep track of your symptoms...ask your GP for another referral to a ms Neuro if possible..

take care
wobbly
dx

[tonyad]

   Oh Anna,
   I am so sorry for this HORRIBLE joke of a doctors visit!
I am actually speechless!  So how has he left it? is he still going to keep a check on you?

     My personal opinion......"RUN" from this freak of a doctor!.....make an appt to go and see a different Neuro (MS Neuro would be best).
Did you get a chance to say to him.."If you suspected MS in the begining, then what has changed from now to then? An MRI is NOT a dx tool  but rather another possible piece to the puzzle?"

    Sorry, I can not remember, Do you have any clinical features (signs) upon clinical evaluation fro the Neuro?  I am glad that your hubby spoke up a bit for you.

     Anna, again, I am sorry that you are left once again standing in the dark w/ no answers. Are you on any meds?

~Tonya
  

[rendean]

I'm sorry today appointment didn't reveal any new information other than the fact you need a new MS neuro!

This guy sounds like he doesn't have a clue about MS. I think you need to run as fast as you can from this neuro and find someone more informed about the disease and how it presents.

Kudos to your DH for asking what else it could be. and, yes the doc was correct-you don't want MS but you do want and a deserve some educated and informed answers.

I hope you can get some rest tonight and start looking for another neuro tomorrow.

Ren