Hmmm...I think I let the subjects of my sentences get confusing. What I meant to say is:

"...the medical profession is full of competent, worthy, honorable physicians who work hard to do right by their patients. However, there are plenty of them (physicians, specifically neurologists) who are dismissive, incompetent, down-right misogynistic, and who wreak real damage on people (patients) who need to be heeded. I was one of those patients who was dismissed and hurt by an arrogant and mean-spirited neuro. I know there are many other people (who have been hurt) also and plenty of them on this forum. I make my comments for those (people) that are being robbed of the chance (by dismissive doctors) to slow a disabling disease..............Quix

I really garbled the comment. Sorry This is what I meant. Does this clarify it? I see myself on forums like this, to be a patient, a person with MS, who was injured by a dismissive neurologist. That I am a physician is secondary, it just helps me explain what I think others can do if it has happened to them. I'm sorry you thought I was insulting the other members of this forum. I would never do that.

Quix

This is my story: For those of you who have already read it, please just ignore it:

I am a 56 year old female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever suffered. I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!

Three years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put my sock on. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.

I knew this neurologist thought I was a crock. But, he was also supposedly brilliant and had been named one of Portland's "Top 100 Doctors. So, even though he didn't seem to like me, I expected him to be knowledgeable and professional. He examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. At the next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it "definitely wasn't MS and that I was too old for it anyway." I asked what could have caused the sudden weakness and spasticity and he said maybe I had a stroke. But, he didn't think working me up for things that cause strokes was necessary. He sent me home with the diagnosis of "Vertigo and Spasticity- mild." I didn't know much about Adult Neurology and was too fatigued to check out what he had told me. Why would he lie about it? Later I discovered in his notes that he thought I was faking the weakness in my right leg.

During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (Losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, I became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I collapsed in the street crying and a neighbor helped me home. The fatigue and weakness in my right leg continued and became progressively worse. A few months later I had a couple weeks of a weird sensation of warm water running down my right thigh. I kept grabbing myself and checking, because I was sure that I was being incontinent.

I went back to the neuro a year after he had seen me before. Because of the history of incontinence he repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of the spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." His tone impkied that I was faking the problems and just wanted to get medical procedures. Yeah, right... So I told him that "he" was the neurologist and what did he recommend? He said he didn't think the LP would reveal anything. So I told him I didn't see any reason to do it.

The next summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm still dragging my right leg, because it never got better and lurching about like a drunk sailor. I was so tired that I stopped leaving the house. My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.

It was several months before I could get my mental strength and courage to research my own problems. I never wanted to see another doctor in my life! My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was Multiple Sclerosis. All the other possible entities had been ruled out (this is critical in the daignosis of MS) The problem was that my MRI was "normal" (or so I had been told) and I was too old at 54. You can suspect MS, but it appeared that you cannot diagnose it without at least 1 brain or spine lesion on MRI.

I went to the MS Society website and looked for MS specialists in my area. My first neuro was on their list. I called them and found that doctors "volunteer" that they are specialists. There is no selection process. I found another Neuologist, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He said that there is no upper age limit for diagnosing MS. He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine. He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications.

Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine. They were just a little "ratty" looking, not really hyperintensities, but tiny areas that looked different.

The tap was positive for an elevated Protein, elevated IgG index, and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!

Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I'd had intensive physical therapy and still required a brace on my R leg. I needed to use a cane. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.

A month after he diagnosed me, I developed constant electric shocks down my left leg when I flexed my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but was new to me. It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed. He ordered another MRI of my spine but specified that it be done on the new 3T machine in a private imaging center nearby. That MRI showed 6 lesions that had been invisible on the earlier 1.5T machine. Four of those lesions coincided with the areas he had been suspicious off in the earlier MRI. This clinched my diagnosis.

In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.

An arrogant and dismissive neurologist had misread my MRI, erroneously told me I was too old to have MS, indicated that he thought I was malingering or faking my problems and failed to do the proper work up for someone with weakness and spasticity. His treatment of me was humiliating and further destroyed my almost non-existent self-esteem. I set out to help people who have been put into this position. If I can convince even one person to take control of their own destiny and move beyond those soul-sucking doctors who blame unexplained neuro symptoms back onto the patient, then I would be successful. I knew I wasn't crazy, but I almost let an arrogant bast**d convince me otherwise.

That is why I am here and do the things I do. "

Quix

If you were talking about me Quix, then NO! I did not think that, and to make you think so was not my intention. I thought I'd made myself clear in my post. I was only asking for clarification about one tiny part amidst all your posts.

I'm actually very thankful that you've taken the time to explain all this to us, and the discussions that have ensued have been rather refreshing.

I'm sorry that you to had to go through the wringer to get a diagnosis much like so many of our other members. It sucks, it really does!

Big hugs to you because you deserve them.

SPECIAL REQUEST...PLEASE

Would you ALL please raise your font size to number 4?? I cannot read that little size 2 font because of blurry vision. i need to use a magnifying glass.

Please???

And thanks

Jan

Just a couple of things to try for you when we forget about the font. Have you tried holding ctrl and scrolling to make the font larger? Also, in the bottom right of the browser screen (in I.E.) there is a little magnifying glass with 100% next to it. You can click that and increase the magnification on the screen.

That is what I do to help me.

Hi QUIX,

As I've mentioned on several occasions, the information you’ve prepared on the other subject-matter is extremely good, IMHO. In fact it is more concise then any other summaries I've run across on the net for those topics. At the risk of repeating myself, I am thrilled to have somewhere to send people that might help them understand this disease better. I mean that sincerely.

You ASKED for feedback about this summary. Knowing that you take what you are doing (in writing these summaries) very seriously, and that you went through a difficult dx process, I anticipated that any negative criticism may sting a little. That, combined with not really knowing how to verbalize what I wanted to say are the reasons I had difficulty initially broaching my concerns about this particular summary critique. However, I apologized on several occasions if my feedback upset you in any way, and I meant that sincerely too.

I feel you did over-react in your prior posting, to the point of me coming to the conclusion that it is just not worth me participating in these discussions further. You have apologized (thank you), and I accept that apology in good faith. However, I hope you appreciate that if you really want to continue to get honest assessments from others, you may need to find a way to remain objective and somewhat emotionally detached.

We all have the same goal here . . . to support and help others (from within our own abilities and perspective) . . .so hopefully maybe we can move forward with that in mind.

When it comes to a discussion about “The McDonald Criteria”, I guess what I expected was to read about “The MC”; NOT details on the much broader scope of the diagnostic procedure. For me personally, this summary just seemed to have lost its focus by trying to incorporate too much information . . .

Specifically, what I hoped to see, first and foremost, is “what the MC is”, i.e. the table (which sometimes includes a few definitions/descriptions), like these two examples:

http://www.mult-sclerosis.org/DiagnosticCriteria.html

http://www.nationalmssociety.org/download.aspx?id=214

Beyond that, perhaps what would be helpful is some elaboration on:

- why the criteria was developed; its purpose, internationally
- it’s advantages/disadvantages to dx; consistency/false negatives
- detailed definitions or explanations on terminology & testing, as it pertains specifically to those being evaluated by the MC
- the “scenarios” (as you have done) on deciphering the application of the MC
- the necessity to document/diarize neurological symptoms and “events”, going forward
- etc.

However, what I did not expect to read, at least under the title “The McDonald Criteria”, were such topics as:

- that MS is mostly still a “clinical dx” (completely contrary to the “purpose” of the MC)
- an emphasis on the necessity for doctors to spend hoards of time with the patient, recording family history, doing in-depth neurological exams, etc. (at least from the get-go)
- the acknowledgement of a “clinical lesion” (particularly in a discussion about the MC)
- that the emphasis should not be on any testing results
- etc.

I do not feel that the topic of “The McDonald Criteria” is the right place to elaborate on more subjective areas of the “MS DIAGNOSIS procedure”. I fully appreciate that those points may ultimately prove very important (at least for some people that are more difficult to dx) . . . however, what I wanted to see under this title, was only the internationally agreed upon criteria (and perhaps some explantions).

As for what I perceive to be the intended “audience” of this summary information . . .

People usually just get ‘sick’ and go to the doctor. Many with MS symptoms are afraid they are having a stroke, or have a brain tumor. They are scared, and they are ill-informed (unlike yourself, who is probably much MORE resourceful in medical procedures, testing, etc.)

Their doctor (or neurologist) might give some explanation of some testing that might be necessary, and MIGHT elaborate on what they could be testing for. Depending on the severity of the symptoms, the neuro might order up a MRI, or undertake other testing, according to the The McDonald Criteria. That is just the starting place, but it IS a relatively standard starting place.

As a patient, and if I know he is looking at MS as a possibility, I might want to know DETAILS on the testing that is required to rule in/out MS. I may either go searching the net, or asking on the forums . . . and this is where your summary could be very helpful.

As a person on the forums, who would love to have a place to send those scared people, I want something that explains (in plain English) the STANDARD criteria for dx’ing MS. I want something clear and concise, that includes only what they need to know at that point in time; what are the tests, what is the dx criteria, terminology they might need to know, and what the test results might mean to them.

At that point in time in the dx process, I am not going to want to send them to a summary on the testing requirement for MS, that alludes that “all the testing you are about to undergo is not necessarily going to tell the doctors anything anyway”. That is just way too ambiguous for a scared newbie, IMHO. They need to THINK they might find out what is wrong with them . . . or what PROBABLY is wrong with them . . . ASAP. We know that it doesn’t always work out that way for some people, but I don’t think they need to know that at least until the basic/standard McDonald Criteria testing is complete.

So . . . what I am trying to say is that I think that it would be very useful to expand on the “The McDonald Criteria”, as we know it, but that the “summary” discussion under this heading should be limited in scope to just the MC specifically.

If you wish further clarification on what I am trying to say, please feel free to ask. If you just completely disagree with my points, that is fine too . . . but I really don’t want to debate them. This is JMHO, and intended to offer constructive feedback only.

Cherie

Although this discussion doesn't concern me, since I was DX so many years ago, the old fashion way....and I'm too mature and experienced to allow any Doc/Neuro to dismiss me.. , yet, I am so glad this this thread is here..

Admit it Quix, that's why you are really PO'd....You let that Neuro dismiss you and you haven't been back to smack him..

All Newbys and Limboeers should read and keep up with the discussion here and also do their own research....and for heaven's sakes, get a Neuro who is up on things and cares about his patients. Quix is right...the other inept, unfeeling a-holes are out there.

Go get 'em Peeps..

Okay Cherie, I see this. The topic, as I wrote it, is far more than just the MC. It includes too much subjective stuff, but not enough of it if it is going to be a thorough discussion. You feel (and I'm not sure I disagree) that the editorializing belongs elsewhere. I can try a rewrite with that in mind.

However you are mistaken about several things, and I finally see where your misgivings came from. You misunderstand what the Criteria are. They are not "about the MRIs". They build on the intent of the last 50 years in the progression of the Criteria. Before the two McDonald Criteria, there were the Schumacher and the Poser Criteria. They are all about the approach to the diagnosis of MS and, finally with the MCDonald Criteria, they "include" the way MRI data can be used in addition to the other needed data.

Cherie, you are completely wrong about the "purpose" of the Criteria. That sounds harsh and I don't mean it to be, but it is true. I have read a ton of the literature surrounding the development of the Criteria. I explain more below.


The reason I say you are mistaken is that I have researched the history of the development of the MC and they definitely DID intend to continue to state that the History and Exam is of paramount importance. I have read the full papers accompanying the Criteria. The "purpose" of the McDonald Criteria was to "reinforce the importance of clinical features, and to finally "include" the use of the MRI. They allowed the MRI to substitute for parts or all of a "clinical attack."

They base the entire Criteria on the "Clinical Attacks and Lesions" that can be documented. Only then do they tell the neurologist to look at the MRI data. So an intensive history and physical is mandated by the McDonald Criteria in order to begin the process of diagnosis of MS. The only way to get this extensive Neuro history and Exam is to do it.

Finally, the definition of "an attack" in the McDonald Criteria - Revised - which is a technical 5-Page document, specifies that for the purposes of the Criteria, there must be a "clinical lesion" found on each attack reported by the patient.

Furthermore, The first column in the chart must be satisfied before you move on to the second column. This is the way medical charts function. So you must know "from the get-go" how many "attacks" and how many "clinical lesions" are present. Those two pieces of information can only be obtained by an in depth history and exam.

Note:The consulting neurologist is going to bill from $350 to $600 for this initial service. By the laws of ethics and the legal laws overseeing medical fraud, a "Full Consultation" MUST include an in-depth H&P.

Those last 5 paragraphs were not my opinion, nor my interpretation of the McDonald Criteria You or I might like them to be different, but they are what the formulators of the Criteria intended. I can't do anything about that. To ignore that or to downplay it would be to write something subjective and inaccurate.

But, I can cut out a lot of the editorializing. Keep in mind that I wrote this with the Limbo Lander in mind. I would have to redirect MY purpose in writing it. I certainly could have two discussions, very similar in content, but one with the emphasis where it needs to be for people whose evaluation consisted of 3 or 4 tests on the exam and a piddly history. Several members of another forum had a "full consultation" (as noted by the billing code) who were never touched by the doctor! This is not only medical fraud, malpractice, but it is illegal and lousy medicine.

Before, we digress into another discussion of whether this often happens, I need to know that you see the point I am making about the necessity of a thorough H&P, and of the true importance (to the developers) of the "clinical lesion." Because, if you maintain that the "purpose" of the Criteria does not include those, we have no basis for discussion.

Why don't I try to boil down the article, remove the editorializing, and try to make it more succinct? It will still contain the information of the intial importance of the history and exam. I am also going to post a thread with the article I wrote on the History of the Diagnosis of MS. That might give everyone a better background.

I WILL maintain my objectivity as this goes forward, I promise!

Quix

LOL, Sally , I haven't smacked him, but I sent him a scathing nastygram! (to which he hasn't replied)

Quixxle

I understand your points, QUIX, and appreciate that my explanation of what I "expected" would come across as extremely black and white (with no consideration to the history of MS dx, etc.).

I was really just trying to back up the discussion to try to make my underlying point clearer; that what I'd like to have seen, is this more from the perspective of a suddenly sickly person (vs. the frustrated person who's been put through the wringer with their doctor already . . . WAY over-dramatizing that point too, but I hope you know what I mean).

There are so many ways that people can present with MS, but one thing I know for sure . . . doctors seem to HATE when patients come in and think they've got it all figured out already. I'm sure that doesn't happen very often, but it does happen. I suspect the "traditional" way people present is just plain scared, with very seldom the thought of MS (isn't that the Jerry disease?) on their mind.

In my case, for instance, I thought I was a perfectly healthy person until I became paralyzed over a week or so. In retrospect, I had had symptoms of MS for years already, but never connected them to that incident until YEARS after the dx . . . And, even though MS is very prevalent here, THEY did not appear to approach what was happening to me from an MS-angle at all either . . . well, at least I had no idea that they were.

They did X-rays of my spine (I lived in a ski village), they asked about recent viruses I might have had, they tested my "numbness" with pins . . . all the usual stuff for "spinal injuries" and mennigitis-type stuff.

Eventually I landed in the city emergency, and was admitted for a series of tests, including an LP/Myelogram, some visual thing . . . lots of poking and prodding. Since they botched the LP in a very bad way, that left me in the Brain Trauma Unit, completely K-O’d for a further week. By the time they got around to even suggesting a MRI . . . I BOLTED (well limped terribly bad)!!

When I saw the neurologist a week or so later, she mentioned transverse myelitis and the likihood of MS or a virus that got into my CNS. Her final words were "time will tell". It was 12 yrs before "time told" . . . and it didn't happen to matter to me because there were no drug options available or recommended anyway.

My point is only that things do not usually fit into a nice, neat little package . . . as we all know that . However, I think no matter how we present (paralyzed, blind, or weak), and depending on how serious our current condition is, (perhaps combined with a detailed history, if we can talk) . . . they put us through a series of objective tests to see if it MAY be something else (first), or MS (last). If it comes down to leaning towards MS, at a minimum, we should have all the testing associated to the MC.

I realize you approached this from a limboland perspective, and that’s what didn’t feel right. I just feel the MC section is what it is (whatever it is), and nothing more.

Anyway, I think that's all I have to say about this (for now anyway). Everything I've said has been over-dramatic, without consideration for the history of MS (I know, they used to just put us in hot water, then called it "hysteria" when they figured out what was wrong ). I'm just suggesting to keep this MC summary simple and concise, like you have with everything else.

Cherie