Went to neurologist yesterday...

Good morning!  Just wanted to share and see if anyone else has dealt with anything like this...

Yesterday, after 3 drs. telling me to go to see neuro for MS, I finally went (thanks to those who encouraged me).  So he walks in and starts talking about migraines and spends 20 minutes on it - without any mention of MS.  I finally stop him and try to explain what is going on and he says that migraines can cause numbness and tingling (even though my legs have gone completely numb and caused me to fall and break my wrist).  Neuro saya that you do not get headaches with MS.  
He continues this way until he notices that I have a bladder disorder and finally says he needs an MRI of the brain, t-spine and c-spine.  I definately get headaches, but also extreme fatigue, urgency urinating and inability to completely empty my bladder, tightness in chest and trunk area - I've been to the ER thinking I was having a heart attack, numbness and tingling in legs and arm and left side of face - skin feels like bugs are crawling on it so much of the time.  I also feel like my feet and head are on fire.  I was recently in a wheelchair for 2 months due to pain and have been having bowel issues and sudden blurry area in my eye - goes away as sudden as it appears but keeps happening.
I have been diagnosed with intercysticial cyctitis, osteoporosis, migraines, lumbar disk disease, and now the primary wants a colonoscopy for IBS.  
Do any of you have the same problem with doctors - most just want to give me either pain, anxiety, or depression medicine.  I have a drawer full and do not take any because I don't want to mask the problem - I feel like I'm losing my mind.  Not just because of this - but I can't remember anything either.  
Sorry I'm going on...guess I just needed to vent!  Thanks so much for listening.  Hope you all are having a better day than I.

[Udkas]

Hi there,
and welcome to the MS forum, I don't think we have met before.  You can get migraine's with MS and Transverse Myelitis.  Lesions in the brainstem and cervical area are more likely to cause headaches... So I would give this neuro the flick.  

Yes migraines can cause numbness and pins and needles etc. that can very well mimic many symptoms of MS but without a workup and a history and exam etc. I think it's odd that he is making this assumption.

I am glad you are having the MRI done, I hope it is on a T3 machine.  It's good to vent, I hope you feel better soon.  I had to vent a couple of days ago, so I understand.

Cheers,
Udkas.

[sweetie1414]

I can tell you from experience that doctors sometimes want to ignore the obvious.I had a horrible time with my GP ....it was a 2 year battle to get them to do an MRI when it was obvious that something was causing all my pain and numbness..only after a neuro who did a nerve conduction test suggested MS or spinal cord compression did they send me for an MRI.When the MRI results came back they could not get me to see a neurologist fast enough.He looked at the MRI and my history and diagnosed me the same day...saying definant MS........Just bear with them , I do know how hard and frustrating it can be.Maybe the MRI will help.

[debtea]

Just wanted to say thanks for the input..it is VERY frustrating!  The MRI is being done on a 1.5 - they don't have a T3.  Will that make a difference?
I am having the brain MRI on Thursday and the cspine and tspine on Friday - my b-day!  What a way to spend it! LOL!

[uk2]

Hi

Sound like they starting to take notice it can take a while to get a dx 3 yrs on and i am still none the wiser as to the strength of the machine this has been debated on here many times mine was done on a 1.5 and no MS prtocol but if done with a ms protocol which means thin slices and sometimes with contrast it should be o.k.

Good luck and keep us posted.

[goofysmom1]

Hi!  Welcome to a wonderful place!  Don't worry about ranting - we do that a lot here!!  :)  It is very theraputic!

The strength of the MRI can matter, but the 1.5T is what most hospitals/clinics are using right now as the 3T machines are very expensive.  

Keep fighting - if this doctor doesn't listen, then find another.  I saw 2 general neurologists before finally being referred to an MS neuro who now says that she is "highly suspicious that I have MS".  She ordered a 3T MRI of the brain and we will go over those results when I see her again on August 6th.  I finally found a neurologist who is really listening to me.  So keep fighting for answers.

Keep us posted on how things are going.

Hugs,
Chrisy

[PastorDan]

Are your neurologist's initials BPF or ADQ?  Seriously, that routine sounds all too familiar.  Must be something they teach in med school.  "If you have a patient that you don't know what to do with, or what is the matter with them, tell them it's something for which there aren't any tests to prove or disprove it.  Migraine, for example."

Just ranting and venting a bit myself.  I'm prone to that lately.  Might be a migraine symptom -- OR NOT!

[debtea]

Thanks for the responses.  Good, yet really sad to know that mine is not the only doctor who wants to pass things off as a migraine or some other nonsense.  Like I wouldn't love for it to be something like that, but I know better.  Isn't that a kick - I know better than the dr.  I'm getting the MRI of the brain on Thurs. and the c-spine and T-spine on Friday.  Since I'm going close to my house and my doctor is over 2 hours away, they are giving me a CD Friday to take with me and then I will be picking up the report next week.  I'll have to bring them with me to the dr. on the 10th of August, but I will have them first.
Opinion - Should I look at them or better off waiting?

[LLWB]

Gotta laugh at your last question........are you really strong enough to resist reading the report? I couldn't make heads or tails looking at my CD. but the reports are relativly read-able. And you can always check medical terms online. The upper right hand corner of this website has a health pages link that is very helpful to someone starting on this journey of diagnosis. Written by actual real people, LOL. Many here have gone thru 4 or 5 neuros before they get someone to take them seriously. Most at one time or another have been told it's all in their heads. Well, yeah, it is, but not the way they are inferring. Good luck for your MRI's, and HAPPY BIRTHDAY!!

Maggie

[PastorDan]

My neuro-psych doc very recently told me that it's most definitely NOT "all in my head" in the sense that the phrase is dismissively applied to so many of us.  Rather, he went so far as to say that, based on my neuro-psych assessment (several times as long as my best neuro exam, incidentally), there is no doubt in his mind that this experience is entirely consistent with some kind of disease process in the white matter of the brain, and that the only emotional component of it is the stress it causes, not the other way around.  Therefore, as Maggie said it IS all in my head, just not in that way.

He wouldn't go so far as to say that the stupid arrogant neuros were adding to the stress, but he agreed that the lack of a credible diagnosis, coupled with the perception of minimal progress being made, or even pursued, toward finding one, would naturally increase a person's anxiety level.

Peace, blessings, and best wishes to all.

[Karen99]

By chance, my last two neurologists had specialties in neurology and psychiatry.  (moving caused me to seek another.)  Maybe that's why there were both outstanding.  

[opie74]

I went to several neuros and for years they told me all of the numeros lesions were from migrains. Low and behold I get doublevision just after giving birth and a year later (and two neuros) I got a Dx.

Best wishes to you!