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!"
jj...i truly agree with q. i am still STUNNED at how doctors can ignore the obvious.
thinking of you...
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!!
Got to love it!
I guess it begs the question "Why are doctors so reluctant to give a diagnosis of MS?".
Yes, it is a process of elimination, but once the obvious and mimics have been eliminated, what holds them back?
In the meantime, without treatment, the disease progresses and quality of life declines. There is something fundamentally wrong with this picture.
Hope J K Rowling's gift does something to advance awareness, research and dx of MS.
Admire you're spunk, but don't think I'd be saying "Got to love it" if I were in your shoes.
Sending some magic dust your way in hopes that this endless trail of doctors and tests ends soon with something a diagnosis.
Sleep tight (the fairy dust helps with that too).
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!!
PS thanks for the magic dust, hope it helps :-)
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:
This article lists the test needed to rule out the common mimics and 100 diseases
mistaken for MS.
My endocrinologist sent me to a rheumatologist to rule out vasculitis!!
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.
Anyway thanks again Bob, a great read!
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
II. Red flags in the laboratory 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.