Need advice please and thank you!!!

[lilsis7593]

The neuro I saw last week said I absolutely do not have MS. There aren't enough lesions on my brain, and my symptoms weren't consistent enough. I have several symptoms and have been keeping track of these symptoms for over 4 years. I truly believe that I have MS and I don't take the diagnoses, (or lack there of) lightly. The neuro said he didn't know what was going on with me, but that I would just have to learn to live with it. I'm requesting a second opinion, but I guess my question is... has this happened to anyone else? and what was the outcome? Is it right to pursue a second opinion, or is the neuro probably right? I'm extremely frustrated and don't like being dismissed by a medical professional who is supposed to help people. He took less than 3 minutes to look over my MRI (w & wo contrast) and said it's not MS.

This is not something that I can continue to just "live with". These tremors are about to get the best of me. I'm so tired all the time that I can barely function. My mind isn't wanting to work right... and this squeezing around my ribs and hips is so uncomfortable and a lot of times extremely painful that i can hardly stand it. That's just a few of the things I'm dealing with regularly. I'm open to any helpful suggestions. I just need answers... or maybe I really am just crazy. :'(

[Jules A]

People are often reluctant to pay out of pocket for a second opinion but if I was convinced something was wrong with me and the Dr. disregarded it thats exactly what I'd do.

There are so many vague neuro complaints that could be anything but without knowing any specifics I'd say unless you are old or have a reason to have lesions on your brain I'm not aware there are a certain number that are considered normal in a young, healthy person.

[lilsis7593]

i am 40 years old. Been healthy all my life. Athletic and active in the lives of my 3 girls, as well as church and local events. I am on the heavy side, but not to where it really affects me or my health. ( I just can't wear skinny jeans ) I know a big part of diagnosing MS is ruling out many illnesses that are similar. My primary doc has run several tests on me (B12, Vit D, Sed rate,
RA factor, tested for lupus, lyme...etc) and everything has come back fine except my CRP is extremely high ( and has been high for years). The MRI of my brain is the only thing that's come back with abnormalities. The radiologist report said his findings were consistent with possible demyelinating or vascular disease. I just wanna know what's making me feel like I do so I can fix/treat it and feel better. =(
I'm gladly gonna pay for second opinion. I know something isn't right.
Thank you for commenting back. =)
Have a blessed day.

[Jules A]

Definitely request a referral to a neurologist and hopefully your insurance will cover it. Aches, pains, weakness, fatigue, meh but even without being a MD in nothing more than my non-neurologist opinion a healthy 40 yo with lesions on their brain isn't normal. Please keep us posted.

[Kimba22]

Good for you to seek a second opinion. That's what I would recommend, as well. You might find another neurologist here: http://www.nationalmssociety.org/Tre...261&type=1%2C2. Would recommend a MS Specialist over a general neurologist.

There is specific criteria (MacDonald Criteria) to be fulfilled before you are given a MS diagnosis, and unfortunately it takes awhile for some of us to fulfill it. Here's more info on the diagnostic process. http://www.nationalmssociety.org/Sym.../Diagnosing-MS

Listen to your gut feelings, and I hope you find a doctor who can figure out what's wrong. Good luck to you.

[jreagan70]

Hi lilsis:

With the possibility of any chronic systemic disease, it's a good idea to get a second opinion. Even if your neuro had made a diagnosis of MS, it would still be a good idea to get a second opinion. Misdiagnosis can go the other way too. It's possible that the MS diagnosis is incorrect and a person could end up taking potentially harmful medications for MS that they don't even need and further delaying the diagnosis of the actual condition.

With your radiology report noting the possibility of demyelinating disease, it's preferable that you see a neurologist who is a specialist in the treatment of MS (MS is not a designated medical subspecialty, it's a description of what the neurologist focuses his/her practice on) or a neurologist who emphasizes neuroimmunology (including other autoimmune neurological conditions).

You're more likely to find an MS specialist at a medical center associated with a major university (where a medical school is) or specialty neurology clinic. You're less likely to find one on the list of general neurologists your medical insurance sends you to. You may have to pay for it out of pocket if the doctor is out of your insurance network, but you can also petition your medical insurer for an out of network referral based on the previous neuro's inability to diagnose you with anything in particular.

In addition, your primary doc may have run many tests on you that have come back normal, but a high CRP is not normal and should be pursued further. Have you been referred to a rheumatologist? Your primary doc can't do with your CRP what the neurologist did and say "I don't know what it is so you'll just have to live with it."

An elevated CRP is a general sign of inflammation. Although people with MS can have an elevated CRP due to inflammation, CRP level is not one of the diagnostic criteria for MS, nor is testing for it part of the workup.

Longstanding elevated CRP is obvious not good, as it affects the health of all of your organs. You said that you're on the heavy side but not to where it affects you or your health. Well, the high CRP may be the sign that it IS in fact affecting your health in ways you just aren't recognizing. Adipose tissue is associated with elevated CRP, and elevated CRP indicates a higher risk of heart attack and stroke -- even in your 40s.

Your radiology report included vascular disease as a possible cause of the brain lesions on your MRI. Inflammation is a major cause of vascular disease. Brain tissue damaged by vascular disease will cause the same symptoms as brain tissue damaged by demyelination -- or physical trauma -- or poisoning. So finding the underlying cause of your brain lesions is important to getting you on the proper treatment.

So in addition to getting a second opinion from an MS specialist, it's a good idea to get a referral to a rheumatologist or other specialist to find the underlying cause of your high CRP.