Was waiting to hear back from you about your appointment.
Let me start off with This could be GREAT news. No one wants to be diagnosed with MS, but now it is eleminating other causes and that is always the first step when seeing a neuro. It is an elimination process that no one wants to go through but there are so many neurological disorders that to make a diagnosis it is and elimination game.
No Neurologist wants to go on record saying it is MS until there are at least 2 episodes of attacks and the MRI shows something. But hang in there and play their elimination games.
First off let me tell you that my experience with my neuro. He always insisted that it isn't MS. I think they are afraid to jump in a just say it.
His first test was an x-ray of my spine to check for any disc problems.
He told me countless times that it isn't, but as the symptoms persist and get worse, and I had my MRI and it finally showed something, he started changing his tune. He fianlly admitted after almost 2 years of seeing him that he is pretty sure it is MS.
Don't get discouraged, follow through with her. Make a journal of your symptoms and how long they last, when they get worse. Be persistant with her, if this MRI doesn't show anything then just remember that not everyone's show something the first time.
It took 3 MRI's for my lesions to start showing and then the neuro started believing that it is MS, therefor he ordered an LP.
As for her diagnosing 2 people in a month and over her 20 years, that doesn't mean anything, all MSers have different symptoms. So she can't really compare one MSer to another.
Do you still have dizziness all the time? I know an ear infection can throw you off balance but not on a regular basis if it is cleared up.
Hang in there and take care,
excellent advice and a part of me is very happy and hopefull that maybe she could be right.
just the one thing troubling me about all of this is the anxiety remark. makes me feel like she is not taking me seriously...
however, onto physio i will stumble!
and yes, my dizziness is still there. i'm going to go see my doc. about it...at last check she saw only pressure, not infection in my ear...perhaps it's time for an ear/nose/throat specialist?
how are you??
Take a look at the health pages, there is a good one that goes in to a bit of detail, I can't remember the exact name but its all about conversion disorder. Have a read, it will help you sort out the 'anxiety' comment and put a little perspective onto what your neuro is probably thinking.
Don't dispair, go to the physio, it could help you assertain some more information, physio's tend to see first hand weakness, now and over time, they also document their findings, it can help. I also recommend seeing a psychologist and get your mental health assessed, if you do need help on that, you'll get it, if you dont then you have that additional evidence. It's impossible to have a mental health condition, such as conversion disorder without having considerable problems, especially anxiety of notable scales throughout your life.
Check out the health pages and see if it sounds possible or if its way off.
Hi, I read your post with growing disappointment. I don't mean to be a wet blanket here, nor to say that I think you have MS, BUT....
First, it sounded like this was your first neuro appointment. Is that correct? Then as a first consultation she is obligated - in my medical mind - to do a thorough neuro exam. This should not be a quickie, just checking a couple things here and there. I realize that you are in Canada and there might be other expections of specialists there, but I actually doubt it. Many of our other Canadians report in depth visits with their neurologists.
For instance, you didn't mention careful checking of the reflexes which is one of the very commonest findings. She watched you take only a couple steps. This is no analysis of the gait at all. For tandem walking I usually have to walk about 6 feet - or at least that is what they request. I can't master even one. She cut you off before you could show her anything.
Testing sensation is typically done with for at least two types of sensation. The most common are pinpr*ck and soft touch, but testing vibratory sense and hot/cold are also done.
The EMG was normal as it would be in MS.
Then she sat you down for the assessment she had made before she ever examined you. She thinks your problems are dwelling too much on your health. Early in the visit she deemed you one of the Walking Worried. I would say she never gave you a chance.
As to her prowess in diagnosing MS. I would venture a guess that all of her diagnosees have had classic findings - and since that is all she sees, she has constructed a self-fulfilling view of how MS presents. Have we heard here on the forum about MS presenting with something as mild as a spot of numbness? Absolutely! That kind of presentation is even talked about in general articles about MS.
Dizziness, you asked. Since that didn't fit into her bias of anxiety, she fobbed it off with a glib answer.
The MRI has shown a new lesion. That is enormously important - and, lol, hardly due to anxiety. Yes, please read the HP on conversion disorder which is very rare and is shamelessly and ignorantly used to get people out of the medical office. Along these lines, JJ had a good suggestion, that of getting a mental health assessment. If it shows significant psychological problems, then you can address those. If, however, it shows that you are right as rain, then you have that evidence to take with you to the next neurologist, who, hopefully, will address you with an open and inquiring mind.
She at least saw the banding of tightness as something to look into. This is good, but I am very mistrustflul of her overall medical integrity since she assessed you as an anxiety case BEFORE she had done the diagnostic testing. She is going to image the spinal cord. Let's hope she includes the thoracic spine as that would be the source of the sensation of binding - if the banding was in your torso.
Now, you have a high sed rate. How high is it? If it is over 40 or so, then this is a finding that points away from MS. MS is not a disease that shows up with an elevated index of inflammation (which is what the Sed Rate is). That test does point to an inflammatory process that could be an infection or a rheumatological disease. Did they run and ANA?
She has fallen into the trap of pronouncing an assessment that required three possible diagnoses to explain your problems, back injury, ear infection, and anxiety, plus whatever the new MRIs might show. Very sloppy medical thinking. Possible, yes, but settling on three diagnoses right off the bat is NOT how we are trained.
If you felt like she was dismissive of you from the beginning, she very likely was. That intuition is not often wrong.
But, hang in there. You know something is wrong. Keeping gathering evidence and then maybe find an interested neurologist.
Doctors that claim that they haven't seen somethingin their twenty/thirty years of practice sometimes think that they have seen everything there is to see. This is so far from reality. I had an ankle effusion (swelling) that was caused by a certain virus I had in 1999. The effusion never resolved and occasionally flares up into an arthritis. I showed it to a rheumatologist who said, "Arthritis caused by this virus are never permanent." Hello!!! I was showing her one that had become permanent. Instead of rejecting the evidence that was in front of her and learning from it, she went back to what she had learned. What an ***!
Physio is never a bad idea unless we are trained athletes. I have no problem with it and it might help some of your issues. However, I also think that sending a person to physio is just some doctors' way of getting you out of sight and mind. You know the saying:
"Work is just something you do while someone else makes off with the gold." lol
Do see the rheumatologist. Get the full blood work that will investigate the high Sed Rate.
wow, quix, i cannot thank you enough for the time you have spent with this post.
a few quick things to clarify though, i think you may have part of me confused with someone else..but i'm not sure who. (evidence to the fact of your ongoing dedication to helping all of us out here in this forum!!) THANK YOU SOOOOO MUCH! truly!
the bits that were not my info, are that i have not yet had an mri--only a ct scan which the neuro says mentioned some disc "issues". also, never had a sed. rate done that i know of. though one of the docs i saw did some rheumatological (is that even a word) testing, i am not sure what exactly. do i remember rheumatoid factor??
nonetheless i am soaking up every morsel of advice and perspective mentioned here.
of most interest to me was that it can even be commonly found that folks may present with just small patches of numbness initially. yes, she certainly seemed to have a good idea of exactly how ms presents. she even stood up, came around her desk and showed me the normal progression in full pantomime fashion..."starts with a foot, moving up to the calf/thigh, pubic area, ocassionally around the torso, and then onto the next side--always bilateral" hmmmm.
also great advice about the psychologist. it certainly can't hurt to have that report to bring with me the next time. oh and it was my first appointment to see a neurologist by the way.
however, i have been to see a very good neurologist in action (who is sadly retiring this year)as a spectator when my mum was sick a year and a half ago, and saw the full range testing done on her, which was quite different from how my appt. went.
i was only just about to put my third foot down (for tandem walking) when she told me to stop and jump up on her table.
when i was in the waiting room....she had come out to tell all 3 of us waiting that she was terribly behind and in her shorts already because as soon as her day was done, she was heading to the cottage. if we could please explain to everyone else that she is running behind. so she was definately in a rush!! self professed!
i'm going to speak with my pcp tomorrow about it all. she and i have a wonderful relationship--i have actually worked with both her and her husband in a work environment and she takes my word for exactly what it is. i know that on my referral to the allergist/internal medicine specialist, she actually underscored that i never exaggerate symptoms. i wonder if this same bit of info was on this referral, or if it even would have helped?
i have never suffered anxiety or depression before though i know them very intimately from a few close friends--and do understand their weight.
i believe she has ordered the imaging for the whole spine and brain--and one thing i was impressed with is that she is sending me to hamilton (a reputable diagnosic imaging centre) to get them done.
i'll keep in touch about what my pcp thinks of it all tomorrow, and in the meantime, i have a physio assessment booked for this friday. i have a scoliosis so it truly will be good no matter what relation it might have to my other symptoms.
i'm off to read the article on conversion disorder now.
thanks to everyone for responding. as always, sooo appreciated!
hope the day is finding you all well (or as well as can be expected!)
Wow, I really did confuse two stories and I am sooooo sorry. What a dufus! I can't figure out where I got the extraneous info. I am one of those docs you should avoid, I guess. How embarassing!
Okay, just X-out all the blarney about the MRI and the inflammation -- I had just gotten up and apparently my brain was still in bed.
Her description of "how MS progresses" is a riot of narrow-minded drivel. It gets to be included in my rewrite of Lies My Neuro Told Me. She knows far to little to be anything but a danger to someone seeking a diagnosis. She couldn't be farther from the "truth" about how MS acts. Sure, it may progress as she described, but far more often it is different than what she has entrenched in her mind.
My end assessment, tho, remains. She dismissed you before the exam and is doing the MRIs as an afterthought. I don't know that I would trust her to evaluate the MRI truthfully. I suspect she would try to substantiate her initial bias, by dismissing any abnormality with another bogus diagnosis.
Be sure you tell your PCP exactly how this went and that you feel your fate was decided before the investigation (what there is of it) had begun.
Quix (what was I thinking???)