So frustrated!

[MrsRath]

I've already had one doctor that yes he is confident I have MS. I exhibit the classic symptoms (ie: The hug, extreme fatigue, body pain, double/blury vision, weakness, muscle spasms, leg tremors, numbness & tingling in my fingers and toes, exectric shock like pain down my spine if I move the right way, coordination problems, balance problems, mEmory issues, trouble getting words from brain, etc.)

So I had an MRI on my brain both with and without contrast, took them to a different neurologist and he says while I do have lesions on my brain he's not confident saying its MS but he thinks it could be just migraines.

Anyone have this happen? I'm so frustrated and I don't know what to do next. I just want to feel better or as much better as I can. Any suggestions for a newbie? I'd appreciate it greatly. Thank you!

[jreagan70]

I exhibit the classic symptoms (ie: The hug, extreme fatigue, body pain, double/blury vision, weakness, muscle spasms, leg tremors, numbness & tingling in my fingers and toes, exectric shock like pain down my spine if I move the right way, coordination problems, balance problems, mEmory issues, trouble getting words from brain, etc.)

Those are also classic symptoms for many other conditions. Because so many conditions share the same symptoms, symptoms alone can't be used to make a diagnosis.

So I had an MRI on my brain both with and without contrast, took them to a different neurologist and he says while I do have lesions on my brain he's not confident saying its MS but he thinks it could be just migraines.

Lesions that are characteristic of MS tend to look a particular way and are located in particular places in the brain. Many times, lesions don't have a characteristic appearance and are called nonspecific. Migraine lesions tend to be nonspecific in appearance.

The radiology report for your MRIs has an Impression section that should list the possible causes for brain lesions that look like yours. That's the first place to look for clues about what your brain lesions might represent. If your lesions are nonspecific, your MRI might not be particularly helpful in pointing to a specific diagnosis.

Second, general neurologists who aren't used to seeing a lot of nonspecific MRIs or even those characteristic of MS may have different opinions about what the lesions represent, especially if the radiology report doesn't have a particular indication. If your lesions are truly nonspecific, there could easily be difference of opinion between a cautious neurologist and one who might be a little overenthusiastic to diagnose.

There is no single test that's diagnostic of MS. Diagnosis depends on a combination of MRI results, specific presentation of symptoms, and possibly some other tests PLUS the ruling out of other conditions that can cause the same symptoms and test results.

Yes, disagreements between neurologists about the diagnosis/presence of MS do occur because of nonspecific test results and sometimes insufficient experience/skills.

It sounds like you need a tiebreaker opinion, and it should come only from a neurologist experienced and skilled with MS. If you just pick a neurologist off the list from your medical insurance, you might have some difficulty finding one quickly.

There are three reasonably good ways to find a neurologist skilled in MS (the general population often refers to them as "MS specialists," although MS isn't an official, recognized medical subspecialty).

1. Go to the neurology department at a university teaching hospital/clinic. Some of them have specific MS departments within the Neurology department. Because they're affiliated with medical schools, these hospitals/clinics often act as referral centers and see a lot of challenging cases. If you live close enough to one, it might even be on the list of providers for your medical insurance.
2. Go the the website of the Consortium of Multiple Sclerosis Centers and search for a possible affiliated neurology clinic. www.mscare.org > Directories > MS Centers and enter your location to search.
3. Get information about neurologists and clinics from the National Multiple Sclerosis Society. You can contact your local chapter (from which the information might or might not lead to great neurologists -- some people have reported duds) or use the society's online search feature. http://www.nationalmssociety.org/Tre...ers-in-MS-Care

Instant fixes don't happen, and sometimes things can't be fixed, so now is a good time to try to put your frustration on the back burner and practice patience instead. That's one thing you are in control of.

In making a diagnosis of MS, prudent neurologists follow the MacDonald diagnostic criteria for MS, which you can read about here: http://onlinelibrary.wiley.com/doi/1...ana.22366/full. And, depending on a person's symptoms, MRIs and other test results, sometimes it takes a while before the criteria are met. I wish you all the best on your journey.