The optic neuritis posts had me checking out causes for my dx eye issues, that sent me off looking into all my dx issues, finding the missing link. Funny but MS was listed over and over again, NO other dx included everything and yet i still dont have a dx of anykind to explain all these (cough) unrelated dx and the subjective sx are not even counted lol.
DX Unilateral optic neuropathy - pale optic disc - early Glaucoma with normal IOP & peripheral vision(?? ON)
DX Unilateral Nystamgus - acquired - horizontal jerk
DX Diplopia - acquired (prior to dx diplopia, remitting blurred vision and intermittant eye pain, ON maybe??)
DX farsighted - L almost normal R significantly affected, normal vision when last tested, unrelated to Glaucoma
DX Photophobia - acquired
DX Fatigue - Hypoglycemia without diagnostic evidence (normal blood gucose levels)
DX Muscle issues:
Torn flexor muscle (?) lower arm muscle off the bone, dx by sx of pain on muscle flex, burn, heat
Intercostal muscle spasms (MS Hug ?)
DX Tremor - Hypoglycemia related (not likely)
DX Clonus - noted by neuro tests but dismissed, MRI reported chronic Ischemic small vessel disease
DX cognitive issues from cognitive assessment: (note dismissed because still within normal range grrrrr)
-45 IQ points
short term memory issues
DX Romberg's - neuro tests but dismissed, MRI reported chronic ischemic small vessel disease
DX Raynaud's - poor circulation
DX Inflamed veins - including occular but still no known cause, i'm cleared of the usual ones
DX chillblains - auto immune, no RA
DX brain lesions - but named the cause as chronic small vessel disease so all the above is irrelevant (lol)
DX sane - psychological testing cleared for mental health issues
Then i have the subjective sensory issues, like Uhthoff's, tingling spots, hot spots, wet spot etc, not sure where balance and my communications issues go, mentioned by my GP but not an official dx. I do know that the chillblains (dx -16) and vein issues (new 2010) are not a usual MS issue but didn't want to exclude, who knows they may fall under autonomatic functions which then makes them still valid.
Anyway, I thought it interesting to write them all down, I was having a laugh about the odds of all this in one person, ramping up since 2003 and still nothing named, got to find it laughable to look for the lesions and find them, name them something that doesn't cause my sx, so dismiss them in there entirety. Ha the last neuro said he only wanted to know if i was blind, hmmmm are you dx with MS all blind, what a tosser ROFL.
JJ - Silly girl. YOu know what all of these spell out. You have had total dunderheads for doctors. NOne of them seem to be able to put things together. Each one only will diagnose the problem in front of them that exact moment. You need a capable diagnostician.
I, for one, cannot believe you don't have a diagnosis. If I was confident that the rule-out has been thorough I would give you an honorary MS diagnosis, but so few neuros pay attention to some errant, former pediatrician blathering away on the internet.
Yes, we have already documented that particular Lie "You can't have MS because you can still see." Hmmmm, proper retort." And you surely cannot be a doctor because you have lost the ability to think!"
All I can say about the rule outs, is that I havent really got much clue into what i've been tested for. I've never been given the results, nothings that the dr expected turned up. I do know i've been tested for these a few times, Lupus, RA, vitamin deficiencies (B's, folate, iron etc) diabetes, anemia, cancer, liver and kidney diseases, I dont even get headaches or migraines apart from the light exposure type. I did once have an EEG show an irregular heart beat but always been good since, no heart disease found and no one in my family has ever had heart disease.
The only thing over the years has been borderline anemia, all the women in my family are the same but my levels have been consistent since my 30's. I've probably been blood tested for more than what i'm aware of, though the exact what i couldn't say. More than a few blood tests, where i've been told it's a full blood work up (to explain the fatigue) but what exactly that intails i cant say beyond 3 or 4 viles and urine tests and still nothing.
I still think those inconvenient brain lesions explain it all, I wouldn't be suprised if there is one in my spine, it would explain the Hug. At least i now have a GP who thinks its neurological, MS specifically, so at least he's thinking big picture!!
I just posted this in the hyper reflex post but thought i should include it here because it adds to the overall picture.
Well colour me purple, i've read all the health pages over and over but for some reason i'd completely forgotten about this, thanks Quix.
5+ - Major kick with sustained, repetitive movements (sustained clonus). Also considered here and in "4+" is if other muscle groups also react with contraction, called "spreading reflex." Clonus is most often seen at the ankle. The doctor will press suddenly up on the toes, dorsiflexing the ankle. With clonus the toes will repeatedly and rhythmically bounce downward if light pressure is kept on the toes. Some doctors use a 0 to 4+ scale and use 4.5+ (sustained clonus) instead of 5+.
0, 4+, and 5+ are abnormal and indicate neurological problems.
Hyperactive reflexes usually indicate a problem (lesion) in the spinal cord. You may hear this being called an Upper Motor Neuron Sign. Or the doctor may find hyperactive reflexes and diagnosis Myelopathy (disease of the spinal cord). This is one of the most freqently abnormal tests on the neurological exam in a person with MS.
Now that makes sense as to why i was kicking the neuro hard enough for him to loose his balance (he he) and why the rest of my left leg muscles where spasming, like a ripple up my leg, ahhh its got a name " spreading reflex". I knew i had clonus, thought i had asymetrical hyper reflex because when he set off the clonus, my foot kept jerking and jerking from my ankle. Its hard to recall if it only stopped after my leg was completely straight, the muscles responded in hard thumps, rippling up to my groin and the feeling of being tasered was doing my head in. AHHHHHHHHHHHHHHHHHHHH!
The right leg didn't respond anything like the left one did, he only tested the right leg once and moved back to the left, repeating over and over and over and over etc etc. Still wasn't evidence for that neuro because within 5 minutes he was telling me i didn't have a neurological disease lol neuro 1 = twit, neuro 2 = tosser, my fingers are crossed that neuro 3 hasn't left his brains at home.
Hey Audrey, its my sense of humor that has kept me sane, "life is just a box of chocolates" the hardest thing for me to do is hold in the laugh, when i hear something dumb or stupid. An 'experts' mouth needs to be connected to their brains, sometimes its definetly not. lol
I do strongly believe that its just a matter of time before it's obvious enough to get a dx, I dont take meds if i can but i'll be ordering DMD's 2 seconds after dx, that 33% is looking pretty good considering the alternative of doing nothing, heck nothing isn't working for me!!
I see similar stuff to what I went trhough! I saw so many eye doctors and they kept saying no problems! then why is everything foggy :|
I finally saw the right doctors (the ambulatory clinical medicine team for Hard to diagnose people) at the hosptial when I ended up in ER and the ER doctor referred me. the team ordered lots of blood work ups to investigate the blood test results from ER (elevated protein)
I think I had the one of the worse case scenario differential diagnosis that no one was expecting (cancer)
Not saying you have cancer, but you have some alarming symptoms, that are pointing towards something, and you need a good doctor to figure it out! Hypercalcium is not normal! Niether is inflamed blood vessels, and spots in your brain. Have you been tested for stuff like vasculitits? Or blood disease? (lupus etc)
Neurologists like to throw vasculitis around as a differential. CNS Vasculitis is very rare (rarer than MS) and they are some very sick people. The Odds are 1.5 to 15 times greater that it will be MS vs CNS Vasculitis.
The approximate incidence of:
CNS Vasculitis (non-autoimmune) 10/100000
CNS Vasculitis (autoimmune) 100/100000 (with Sjogren’s disease,SLE, etc.)
There is a real good article on the differential diagnosis for MS at:
You know summer, you did get the worse case scenario differential diagnosis!
I had actually spoken to my mum about your situation, she went into panic faze because in our family cancer is the norm (both sides of my gene pool), not the exception. She paniced because I had a breast cancer scare a few years back, i found 1 lump and my GP found 2 more, lots of tests but I didn't have cancer, I should of remembered that and held my tongue but i was a little shocked at your dx and was trying to explain to mum how sometimes its difficult to find the cause until you get the right Dr.
Bob thanks for the link i'll check it out, i'm pooped out and need a nap before dinner, so i'll look at it tonight.
Thanks for that link, its got a lot of really helpful information. The 'One Hundred Conditions Sometimes Mistaken for Multiple Sclerosis' in table 7 was very interesting to me, i'd highly recommend reading for anyone in limbo land.
I did note the alternate dx often didn't have T2 hyperintensity brain lesions, quite helpful in limiting the alternatives if you've got them. lol I nearly had a cow reading in the first section regarding the stats in table 6 (Psychiatric disease 63 (45%) 14 (27%) 53 (76%)) though i'm not sure these stats are anything more than a reflection of the consensus of the clinics in the table.
Still those stats are uncomforably high, ' Most patients referred to a neurologist
for consideration of possible MS who do not have the disease instead suffer from some form of psychiatric disorder: somatization, hypochondriasis, malingering, depression, anxiety, or similar problems. In the few instances where the differential diagnosis of MS patients has been documented (as summarized in Table 6), psychiatric diseases emerged as the foremost problem.' and probably explains why neuro's a quick off the mark in dismissing patients with psychiatric issues.
What i'd really like to see is, these stats followed up with conclusive evidence from psyciatric testing, without more details its hard to know if there even was anything to substanciate the stats or just the neurologists opinion. When you delve into the stats from the psyciatric feilds, they state 33% of patients suspected of having a psychiatric condition, do in fact end up dx with a neurological condition.
OKAY OKAY OKAY I am going to go off on you!!! This is the single stupidest and most damaging artilcle that has ever been written on the subject of the diagnosis of MS. I'm Sorry Bob, but I am glad you felt some doubt at the unsubstantiated claims. These two guys at the Marshfield clinic have written a disengenuous article promoting NOT a true descritpion of the DDX of MS, but promoting an agenda that two thirds of the people being seen at an MS clinic have, instead a psychiatric diagnosis. This is probably the fifth tirade I have written about this article and I am going to say it all over again.
This article entitled Differential Diagnosis of MS is not about it's title. Yes, it has a ridiculously comprehensive table on all things that can cause symptoms similar to MS. The discussion glosses over the more common mimics. However, the thrust and real meat of the discussion is their somaticization hypothesis and they finish with a worthless discussion of how hard this psychiatric condition is to treat.
They state very early in their "discussion" that there are many red flags that should alert the neurologist that the patient likely does no have MS. They state "A rare person with one of these flags will have MS." Rare, in medicine, usually refers to things that the average practicing doctor will not see during their career. A rare disease is often said to occur in the realm of 1 per 10,000 or 1 per 100,000 people. Rare is just that rare.
Okay lets look at the :"Flags"
I. Red flags in the history and examination
1. Normal neurologic examination - This is not a bad flag, but a person with numbness only will often have a "normal" exam. Often docs will not accept an exam abnormalitiy that they cannot SEE.
2. Abnormality in a single location; no dissemination in space - They ignore completely the case of a person with optic neuritis and many MRI lesions. Or they ignore the person with Transverse myelitis, but with many lesions and + O-Bands. These are not reare occurences.
3. Progressive from onset; no dissemination in time - Uhhhh........15% of people with MS have PPMS, the hallmark of which is progressive course. No where in the article did I see that they limited the discussion to RRMS only. Reading docs will only remember the NO PROGRESSION.
4. Onset in childhood or over age 50 - Ahhhh, they call 5% "rare". Where else in the world is 1 in 20 considered rare???
5. Psychiatric disease present, ie, another explanation for findings. Oh, so people with depression, anxiety, bipolar disorder, etc, etc "rarely" get MS???? Is having another disorder protective somehow??? And what about the fact that MS itself CAUSES depression and that many experts recommend that the history of an episode of Major Dperession within two years of the possible diagnosis be considered an "attack" of MS. OR, that having undiagnosed neurologic symptoms CAUSES anxiety in the normal person.
6. Systemic disease present, ie, another explanation for findings. Yes, other diseasses present should be considered to see if they could represent the cause of the neuro symptoms. However, is it RARE to have MS and something else???? How many here have MS AND thyroid disease, RA, Lupus, asthma, cancer, Neurofibromatosis, inflammatory bowel disease, etc, etc.
7. Prominent family history; consider genetic disease - This is squishy. How prominent is prominent? Is two or three close family members prominent? MS is paritally a genetic disease itself. But, lets go back to the wording in the article. It would be RARE for a person with a prominent family history of MS to have a sister, aunt and grandparent with MS? REally. Several here would differ.
8. Gray matter symptoms: dementia, seizures, aphasia - Yes, but sometimes the cognitive deficits can be quite prominent. Seizures??? But, what about the fact that seizures are common in the general population and more common in the MS population. RARE??? Indeed!
9. Peripheral symptoms: peripheral neuropathy, fasciculations - How many people here with MS also have Carpal Tunnel. As we have discussed frequently fasciculations certainly occur in localized areas in people with MS. They are not rare.
10. Acute hemiparesis - an uncommon, but not rare presentation of a sudden attack. The literature is full of the comment that an attack may be mistaken for a stroke. This is just maddening.
11. Lack of typical symptoms: no optic neuritis, bladder problems, Lhermitte sign, sensory level, etc. This is just stupid. If you have a common symptom at the beginning, fine. Is it rare for the presenting symptom to be a seizure, hew-onset headache, localized pain, weak limb, cognitive problems?? RARE???
12. Prolonged benign course, ie, diagnosis made years ago with few findings now. 12% of people with MS will have a prolonged bengin course. It is commonly (though erroneously called Benign MS) 12% is about 1 in 8. THIS is rare???
Okay, this will be posted and I'll go on to the lab tests
1. Normal or atypical MRI - So, only a rare person will have an "atypical" MRI. COMMON!
2. Normal CSF - AT least 5% to as many as 10% will have a negative CSF. Since when is 1 in 20 or 1in 10 RARE.
3. Abnormal blood tests, though many are false positives. This can only be called disengenuous. They even acknowledge that many tests can be falsely positive or negative.
Now, as a physician, we have tons of articles to read. This article will be skimmed, this list of FLAGS will be copied or noted, the table will be looked at and noted that it contains some diseases that NO ONE has ever heard of, and the summary will be read. So the average doc/neuro will see that there is this list of Red Flags that make it virtually certain that a person does not have MS. After all, isn't that what RARE means?? We don't expect to see most rare diseases in our careers. Then we have the comforting info that two thirds of people presenting to an MS clinic will be wackos. Great. That narrows our work immensely.
How many people here have been caught in one of these red flags???
I had 5 of them. What is 5 times RARE?
I find this article to almost criminally misleading and yet it keeps popping up over and over since it was published in the spring of 2007. CAn't get diagnosed? This article is likely why.
Now, I did come across the instrument by which these guys can confidently predict who is somaticizing. They go back later to see if the person has gotten a true diagnosis or if the symptoms have persisted. Okay, 6 months later there is no diagnosis. Must be somatic. No one would take that long if they really had a true neuro disorder right? What is the average length of time from presentation to diagnosis?? Isn't it about a year and a half?
Six months later they check with the person and the symptoms have resolved. Okay, they were just somaticizing, obviously. Symptoms don't ever come and go (in a relapsing remiiting manner) in MS, right?
This entire article is a misleading and incorrent crock of SH IT!
Yes, this article and the others put out by this crew at the Marshfield clinic just make me see red.
how about VEPs ... what does it mean if you have eye issues..blurry/double vision every 6 months or so...on and off... pain behind your one eye that last for weeks..not strong pain...an achy pain.. but your VEP is normal... for two years now I have normal VEP..so they say ??? Not ON.. but my optic whatever is pale??
Confession time, ahhhh i didn't actually read it all, i got a bit flustered after reading this part......
" The “average” person with MS generally has 1 distinct neurologic episode per year—in many studies actually closer to every 24 months—and they are then free of symptoms until their next relapse. Patients with a psychiatric disease generally have multiple symptoms that come and go all the time. They are seldom free of symptoms.
They seldom feel well. "
I was thinking it didn't sound right to what all the MSers discuss on here, i made a note to find the 'studies' because i found it a confusing bit of info. This part....
" The coexistence of known psychiatric problems is obviously another clue that a patient’s neurologic symptoms might be psychiatric in origin. If a patient is known to be anxious or depressed or has a history of other psychosomatic problems, their current symptoms must be viewed with more suspicion."
I was wondering about all the MSers that had been told their psychiatric episodes was caused by their MS. But this part had me seeing red flat............
" Studies have shown that when experienced clinicians conclude (after appropriate investigations) that a patient’s symptoms are “nonorganic,” they are seldom wrong. "
I had to stop reading because i was loosing my cool, blamed PMT and went to bed for a time out. I did go back and skim through but i was basically looking at the 'how it mimics MS'. I probably should of been more diligent, checking validity before recommending it but i was thinking the list was simple and easy to follow. That type of list is something that limbo lander would find useful in making sure they have crossed all the T's and dotted all the i's.
Its not all bad, at least Dr Q in all her wisdom has laid it out, now if someone does read it they will with the sceptism necessary, in stead of blind faith in its validity!
" Studies have shown that when experienced clinicians conclude (after appropriate investigations) that a patient’s symptoms are “nonorganic,” they are seldom wrong. "
What an arrogant statement.
LOL. Let's look at that statement. So these experienced clinicians are rarely wrong when they deem something to be the product of a psychiatric disease. That is an interesting statement and completely UNverifiable. I am a physician who practiced for 23 years. I know that the vast majority of patients to whom you indicate that you think they are somaticizing will not be in your practice for long. So how do the doctors "verify" their opinion? We know that "follow up" can be very misleading in the case of MS and we can suspect that they really don't get a chance to "verify" at all. The patients don't come back unless they really buy into the theory. So, without followup, the doctor sits comfortably smug in the "truth" of his opinion.
Again, if they do follow up with a person that does actually have undiagnosed MS what they might find is: 1) The symptoms remain, but still no diagnosis, 2 ) the symptoms have resolved, 3 ) the patient still might have some symptoms, but may now have new ones also. All of these outcomes are consistent with a psychiatric disorder. The doctor still might conclude that all of these outcomes prove somatization, yet has continued to miss the real diagnosis.
It is a circular reasoning that gives a lie a semblance of truth that is self perpetuating.
My evil neuro deemed me a head case. He is repeatedly considered to be one of the best 100 doctors in our fair city. I didn't go back. What evidence does he have that his opinion is right or wrong. In his arrogance I'm sure he is certain that he was right. But, here I am with a worsening hemiparesis, total incontinence, and a wartload of spinal lesions.
This is Junk Science, believed by it's creators and taught to the neuros who read the article for Continuing Education Credits. It truly sickens me.
I would hope that the whole limbolander forum would read this article, my criticisms of it and see part of the reason they cannot get a diagnosis, be it MS or any other neuro disease that might mimic MS.
I never meant to agree with their "it's all in your head mentality." As far as the Mimics and Things mistaken for MS, I can buy some of that. I already had the doc tell me it's all in my head and my psychiatrist told him , "No, you better look closer."
Jus wanted to say thanks for your concern about my diagnosis, and just wanted to give you a heads up.... Multiple Myeloma is not considered hereditary at all. It's just a rare, bad luck, kind of cancer which has some relation to chemical exposure, or radiation, neither of which responds to me as I grew up in the suburbs of Toronto Ontario!
But, in my case it did turn out to be one illness that explained all the weird, non diagnosis I was acuumulately, actually it was one of my cancer symptoms that caused my nerve symptoms!
I'm feeling a lot better and praying for a long remission!
Valid science or not, this is where many of the neurologists are working from.
Sun Tzu would say "Know your enemy." In my case the Neuro isn't the enemy,
but the disinformation is. Anyhow, take from the article what you can use. If Quix
want's to write the whole thing off as bad science, that's fine, but remember, this is
"Bad Science that some Neuros BELIEVE!" I doubt any of us are in a position to
reeducate our doctors (Maybe Quix, but I get the feeling many don't listen to her
In all the 12-Step meeting they say "Take what you need and leave the rest."
I'd take what Quix says as being "solid." The Docs are going to read this
article and take is as solid since it was published in a peer reviewed publication.
Notice, I'm not disagreeing with Quix. Also note, that I'm not defending the article.
I would bet my neuro has read, seen or heard about data that is in or related to
Bob, to an extent I agree with you. This article is very likely being taken to heart by docs who think they are being educated in MS. HOWEVER, it is the very poor physician who feels knowledgeable enough to diagnosis or treat a disease as complicated as MS on the basis of a single article. If a neuro decides they are going to include a large number of MS patients in their practice, then they owe it to their own professional integrity to educate themselvesby reading the real literature - not a Cliff's Notes version.
If they are not going to see a large number of MS patients in their practice, they should not be dabbling in it at all and should refer it on.
So, I DO fault the Neuros who don't seek multiple sources of info and some from the basic medical literature.
It's like an attorney who has never tried a criminal case, who decides to take on death penalty cases on the basis of a singal article.
wow, well i for one and very happy this article has been brought to my attention!!
thank you both to quix and bob...the know thy enemy bit rings true...now i can understand a bit further where my (can i steal your term q and say..)dunderhead of a neurologist was coming from.
i have thought up until now that she was just a very terrible neuro (which the rate your md would back up) but now i can atleast see where she was coming from.
man, it truly is an uphill battle when things like this are floating around out there.
"Multiple Sclerosis affects some 15,000 to 20,000 people in Australia; it is the most
common chronic neurological disease affecting young women in Australia today."
These figures are commonly listed (OZ) but if you look at Parkinson's, those organisations are saying that each year Parkinson's is diagnosed 4 times the number diagnosed with MS. Sometimes i find MS information stating my state (Victoria) is the most common for MS, yet also find MS information stating the state just below us (Tasmania) is the most common. Both are the coldest climates of the country, so you'd think they'd work out the information a bit better lol.
The stats at the higher end of 20,000 are very few compared to the current population of approx 22.5 million, if my math is correct thats less than .01% of the population diagnosed with MS or something close to that. Now according to the government stats, there are approx 22,500 specialists working in this country, specialists includes all, so neurologists would be a fraction of that number, MS specialists even less.
Medical specialists are doctors recognised by the relevant specialist professional college for specialist practice in fields such as pathology, surgery and internal medicine. The number of employed specialist clinicians increased 18.0% between 2004 and 2008 (from 19,043 to 22,471). The FTE number per 100,000 population rose from 109 to 115."
I can't find anything listing how many MS neurologists there are in my state, but lets face it, unless i get a referal to an MS neurologist at one of the major MS centres, the likelyhood of the neurologist knowing enough about MS or even seeing a healthy number of MSers and its mimics, to know what they are looking at, then bold enough to diagnose, is going to be pretty slim.
I think MS neurologists who have a vested interest in research, cures etc are much more likely to read all the available information regarding MS. I dont think there is any way of knowing how much impact the misinformation is generating but i do feel that if its out there a percentage will be using this and like i've said before, if we who do receive the incorrect dismissal, dont inform the neuro of their mistake, they will continue to believe they are always right!!!! In my mind i feel i have an obligation to inform twit 1 and tosser 2 that they are not infallable, well that is when i do eventually get the dx. lol
FWIW, I was just reading in the NARCOMS newsletter about a study on cognitive coping strategies in MS. This was a small study, but one of the things they noted was
"Moreover, the studies show higher psychoticism in MS subjects compared with the general population, and higher levels of depression and anxiety that can contribute to lower QoL [quality of life] perception" (http://www.ncbi.nlm.nih.gov/pubmed/20640468)
Assuming that's true, it would seem to suggest that finding that someone has a psychological problem of some sort is hardly a red flag to rule out MS.
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