In my experience, the doctors were almost worthless in my early days of trying to get a diagnosis. They were not helpful one bit. I had to go into the ER 3 times and demand an MRI before I finally go diagnosed. It took months of clueless doctors bumbling around not ordering the right tests or dismissing it as nothing because there was nothing they could see. A lot of people with MS have the same story.

Maybe you should get a second opinion. Did you demand an MRI? Can you afford an MRI with your insurance? Is there any reason she would refuse to give you an MRI?

Another cheap trick they use is to order a lumbar or other useless MRI. Make sure you get a brain MRI. Unlike with spinal injuries you cannot predict the location of the lesion by the location of the symptoms with MS. I had a lesion in my neck make my legs go numb. That is because with a spinal injury its usually the nerves leaving the spine that are damaged, but with MS it could be the nerves that are closer to the center of the spine that would be more protected, and those nerves might not exit from the area of the spine they exist in.

Some doctors I have encountered didnt know this. Quack isnt quite the word I would use, more like under qualified or inexperienced.

Sentient, I have had three MRI's now, and lots of other tests to to rule out: blood clots (doplar on my neck), CT scan, all kinds of things attatched to my chest (checking my heart?), blood tests for Lime Disease, etc... No lumbar but it was mentioned.

I'm in Canada so it's all free, the only drawback is the 6 month waiting list to get into an MRI.

My last MRI was on my spine also since I did tell her of my other side going numb. She said they didn't see anything then but it was also 11 months after the attack, I understand sometimes the lesions can heal themselves and not be found then.

My first MRI they found two large lesions 7mm and 11mm and a few smaller ones on the other side of my brain. They a re still there after two years now.

Blue, I just wanted to let you know you are not alone. Even here in the good 'ol US, with prime insurance and living in large metro areas with access to "World Class Doc's" your story is eerily similar to mine. Mine started with the top of my foot going numb, double vision, cognitive and behavioural changes, nystagmus, MRI showing multiple lesions, strange numb spots that came and went all over my body, a near accident, inappropriate behaviour, walking sideways due to affected balance and I was basically "fired" by my first Neuro who said I only had migraines and there was nothing else he could do for me and that my combination of symptoms were never heard of and I was likely crazy! This doctor was on staff at UT Southwestern and Baylor. My second neuro did some emg studies and when they came back abnormal I was told it was due to my age (I was about 35 at the time)! Though she did diagnose me with MS and put me on Copaxone which I took diligently for 18 months. I was off work on private (work) disability at the time and she basically would not support me not working (c'mon, I was falling asleep, talking gibberish, etc.) she told me the "she didn't believe it was good for people not to work". As I was about to loose my home because my work disability was listening to her over all my other doctors, I was forced to go back to work. Luckily they liked me and were supportive. I managed to hang on for another 3 or 4 years. During that time I saw another MS specialist who undiagnosed me and another neuro who only wanted to discuss my headaches. Mind you, during all this time my Primary Care doc kept saying he was almost certain I had MS and he did the best he could to help with pain and spasms, urinary issues, etc. In 2005 I was transferred to Georgia and managed to work another 2 years before I got used up again and was missing too much work, etc. I again went off on company disability, my new Primary care doc here referred me to my current neuro, who is great! I walked in with all my MRI's through the years and for him it was obvious. I am now on Avonex, which I could speak more about but I think I've been long winded enough. I know I have been terribly frustrated along with my boyfriend and my family. Just hang in there. If your doctor is not someone you can trust and be honest and forthright with and recieve the same from them, then just keep looking. It is very important for there to be mutual trust and respect when dealing with any medical issue but especially with an illness such as MS.
Hugs,
Monica

Oh, and I forgot to mention that during all this time all of the MRI reports stated that my lesions were "consistent with a diagnosis of MS". Then I hear about people gettig a numb spot, seeing a doc, and getting a MS diagnosis just like that! It really boggles the mind and my mind can't take much more boggling! : )

Blue,

It took my 5 years to get a final diagnosis. I had "probable MS" for the first 5 years, but with research sorta came to the conclusion it was in fact MS. Today, the use of the MRI has made it easier for diagnosis. When I was diagnosed in 1986, the MRI was not used as much. It was so frustrating going from doctor to doctor and hearing things like "demyelinating disease". You might have to be a bit more patient. BTW, I find it odd your neurologist would say she never heard of numbness. Numbness comes in all sorts of flavors and packages for people with MS. Good luck.

hi...as a fellow canadian...first allow me to clear up a few myths please...sigh..

if you dont like your neuro...switch....yes you are allowed to do that here....does not matter if the health care is free....if you are not involved with a ms clinic and feel you should be...ask your family dr. to refer you to one...;.if you are involved with one...switch....yes this can be done...you do not have to stay with the same one...there is one in london ontario..toronto....hamilton...huntsville...ottawa..just to name a few...i was dealing with the one in london and did not like the treatment i was getting...i am ppms...and use a wheelchair....we are the ones who get the pat on the head simply put...because there is nothing they can do for us......sorry but that is the truth....but i switched to ottawa for hopes of better treatment and am now receiving it....

the only voice going to be heard is yours...use it...

as for stroke...yes it is possible to have both hon....i had my stroke at age 35...it was a TIA according to my epilepsy neuro...smile....
also b-12 defficency can cause numbness and all sorts of funky things..smile...google it..you would be amazed at how many of the symptoms mimic ms.....

i do realize that so many people get fustrated and want a dx of what is going on with their bodies...sigh.....but trust me...if there is one thing you want to avoid or hope to....it is the dx of MS.....

luv
heather

Well said Heather, well said.

We need to leave our feelings and emotions out of medical management.

There are a lot of times we all get frustrated with our medical team.

One story which I think is relevant here-

Shortly before I was dx'ed with MS, I was on my way to an eye appt when my car broke down. Thankfully I was only about 2 blocks from my moms house. I called the tow truck and proceeded to walk back to my mom's
My mom lives in a tiny town and this was a couple days after a huge ice storm. I fell on the ice and re-injured my back and leg sort of. All I know is I was in pain! I waddled to the Post Office and made the Post clerk call my mom so she could pick me up.
My car got fixed and my pain got no better so I made an appt with a doctor in my Dad's town. My Dad went into the nursing home less than two months prior. Well

This doctor barely even looked at me. After briefly talking to her and realizing that she wasn't going to do crap for me I got way overemotional. I started crying and told her that something needed to be done. Well it was common knowledge in this town by now that Dad was in the nursing home so her response was basically: You have been through a lot these past couple months you must be depressed. She wrote me a script for an antidepressant and sent me home.

Well I moved back down to school shortly after that and saw my regular doctor at student health that I had for the past 6 yrs. She knew something was wrong with me.... and at that particular time it wasn't depression! Well tests, trials, and errors later I did the splitz after taking a shower went to the doctor, ended up in the ER and ultimately dxed with MS.

Its very hard to this day to not be bitter about that doctor in my dads town. Its not because she was wrong, but because she didnt investigate the cause further.

My doctor here has been wrong a few times. However each time she has been wrong she either does more tests or refers me to new doctors so that the problem can be taken care of adequately.

Sounds to me like there is some type of communication breakdown. Unsure at this point where the communication breakdown happened, but if you truly feel you are right... do what everyone else says for the most part here... seek that 2nd opinion.

Good luck to you

"Its very hard to this day to not be bitter about that doctor in my dads town. Its not because she was wrong, but because she didnt investigate the cause further."

In my opinion, that doctor was wrong for not investigating further. Its worse than having your first hypothesis be wrong. Its negligence.

Unfortunately people with MS are very commonly overlooked in the early stages. Doctors are trained to look at statistics, and if there is a more likely possibility (Including depression or psychiatric) then they will sometimes dismiss you even if you tell them you cant feel your legs or open or close your hand.

In the ER I was accused to drug seeking behavior, and I wasnt even asking for pain medicine.

Great, just as I was feeling good about the nero I see. I read these posts and think do any of these people in this feild realy know what goes on with us. I wish there was a dr with ms too go see. Then maybe they would understand what we go through.

Maybe someday I will be a holistic nurse practitioner and holistic nutritionist. With my illness it seems like a more realistic long term goal than becoming a doctor. I dont have the grades for med school with all the classes I have had to drop due to my illness.

Find a new neurologist - one with actual MS experience. My last episode that resulted in MS diagnoses begin with the right side of my face going numb, including the ride side of my lips - which resulted in difficulty speaking. While I brought up the possibility of stroke, that was ruled out and all has returned to normal.

I had one doctor who said that MS can mimic a stroke because of the appearance of the lesions in the brain however the numbness was how I was initially dx with MS. I'd get a second or how ever many opinions you need...this doc doesn't sound very reliable.

This too is what got me diagnosed, it started with numbness in my lip, face, then tongue, nose and eventually face scalp and lost hearing... within 3 days I lost use of the entire left side. When I saw an MS "Specialist" a yearish later.. he said the tongue numbness loss of taste was not MS.. yeah. Whatever. I do have MS and my nose and scalp every afternoon when fatigue takes over go numb...