Why is multiple sclerosis so hard to diagnose ?

Question

I am so frustrated...I always hear "Well, you could have M.S., but I am not for sure."
They have done the tests, but they don't say "No you don't have it." They say, we'll have to wait and see...just take it easy for now.
The worst part is my mind is no longer sharp and I am losing the ability to walk on my left leg. I have heard this for 5 years.
I research m.s., people say it took 5 to 20 years to finally be diagnosed. What the heck?

Answer 1

It took me 3 months to get diagnosed because I was very familiar with it. The dr. I had seen for years would not agree with me so I dumped her and went to a neurologist. The MRI showed lesions of the central nervous system. That along with clinical findings pointed straight to MS. I've met people that have been waiting years for an answer. I even met one lady that let doctors remove a couple of ribs trying to resolve her numbness!! I hope your not seeing a dr. in general practice. MS mimmicks many other diseases and they have no clue. At least mine didn't. Find a good neurologist ASAP that has alot of experience. Nobody just out of school. I was dx in 1995. Good Luck

Answer 2

Its not that unusual. These days doctors may know you have a disease but dont want to label it until certain crteria are met. There are several websights where you can get info on this disease. Also, as these are some treatments, if you have MS its good to get diagnosed.

Good Luck!!

Answer 3

Multiple sclerosis is difficult to diagnose in its early stages. In fact, definite diagnosis of MS cannot be made until there is evidence of at least two anatomically separate demyelinating events occurring at least thirty days apart. The McDonald criteria represent international efforts to standardize the diagnosis of MS using clinical data, laboratory data, and radiologic data.[4]

Clinical data alone may be sufficient for a diagnosis of MS. If an individual has suffered two separate episodes of neurologic symptoms characteristic of MS, and the individual also has consistent abnormalities on physical examination, a diagnosis of MS can be made with no further testing. Since some people with MS seek medical attention after only one attack, other testing may hasten the diagnosis and allow earlier initiation of therapy.
Magnetic resonance imaging (MRI) of the brain and spine is often used to evaluate individuals with suspected MS. MRI shows areas of demyelination as bright lesions on T2-weighted images or FLAIR (fluid attenuated inversion recovery) sequences. Gadolinium contrast is used to demonstrate active plaques on T1-weighted images. Because MRI can reveal lesions which occurred previously but produced no clinical symptoms, it can provide the evidence of chronicity needed for a definite diagnosis of MS.
Testing of cerebrospinal fluid (CSF) can provide evidence of chronic inflammation of the central nervous system. The CSF is tested for oligoclonal bands, which are immunoglobulins found in 85% to 95% of people with definite MS (but also found in people with other diseases). [5] Combined with MRI and clinical data, the presence of oligoclonal bands can help make a definite diagnosis of MS. Lumbar puncture is the procedure used to collect a sample of CSF.
The brain of a person with MS often responds less actively to stimulation of the optic nerve and sensory nerves. These brain responses can be examined using Visual evoked potentials (VEPs) and somatosensory evoked potentials (SEPs). Decreased activity on either test can reveal demyelination which may be otherwise asymptomatic. Along with other data, these exams can help find the widespread nerve involvement required for a definite diagnosis of MS.[6]
Another test which may become important in the future is measurement of antibodies against myelin proteins such as myelin oligodendrocyte glycoprotein (MOG) and myelin basic protein (MBP). As of 2005, however, there is no established role for these tests in diagnosing MS.

The signs and symptoms of MS can be similar to other medical problems, such as stroke, brain inflammation, infections such as Lyme disease (which can produce identical MRI lesions and CSF abnormalities[7][8][9][10]), tumors, and other autoimmune problems, such as lupus. Additional testing may be needed to help distinguish MS from these other problems.

Answer 4

the docs want to rule out anything else it might be,anything from Lyme disease to HIV.