Symptoms

[PRW2015]

I've had optic neuritis, "small vessel disease" on MRI and insufficient VIT D level! What do I do next? I'm sure this is MS

[PRW2015]

I know I'm freaking myself out. My wife is telling me the same things as you guys, it's just hard to do what I know I should do! My attitude is effecting my entire family, but I can't stop obsessing over this! My wife is extremely frustrated with me! I truly don't want to have MS. I just need answers. I feel like I'm dying. There just isn't many outside symptoms to back up my thoughts. I am constantly looking on the Internet for something. I don't know what. I always find the worse case scenario. Thank you guys for listening to me!

[aspen2]

I recognize you don't "want" ms ... what you want is answers.  It's a normal way to feel in limbo, believe me :).  It's important to try and get some help with your anxiety because anxiety will worsen symptoms you do have.  Perhaps talk with a counselor?  I find that helpful.

Generally the neurologist still has to correlate with clinical (signs and symptoms) so a diagnosis is not always straightforward.  I've been in limbo 3 years now.  I know it's hard to imagine, but at this point do your best to compartmentalize, live your life, take your wife on a date and try not to talk about medical stuff -- basically breathe.

[aspen2]

Forgot to add, as someone brand new to this all you are aware of is  "ms" or "not ms".  There are a LOT of ms mimics.  So it is important that you meet with the neuro, in particular if the spinal lesions are real and not artifactual (due to an imaging error).

[essdipity]

They can be, since spinal cord lesions generally 'speak' more eloquently than others---that is, they produce more specific symptoms than does the brain, where a lot of territory tends to be 'silent' (a good thing).

But why are you skipping over the very specific questions I posed? It seems you are acting as your own diagnostician, which is a very serious mistake, one that no doctor would make. First is the gathering of the data; then comes the elimination of the extraneous. For this you need an expertly trained neurologist. Even if you had expert knowledge yourself, which apparently you don't, you would still need the unbiased judgment of someone in the field, someone who has experience in dealing with the issues you present. And by the way, you have given us here only your filtered test results, not symptoms or problems that led to the testing to start with.

So my advice is to find a good neuro, bring him or her the results of all your tests, let him her order more tests as seem indicated, and then wait for the outcome. For a diagnosis of MS, specific criteria must be met.

It's a huge mistake to jump to conclusions without the requisite medical knowledge, and it sounds as if you *want* to have MS. Not good, nor scientifically sound. Have all the examinations and rule-out tests, then listen to a neurologist in whom you have confidence. Right now you are far from a diagnosis--if and when that comes, that's the time to deal with what comes next.

ess

[PRW2015]

Are lesions in the spine more dangerous than lesions in the brain?

[HVAC]

It will take a neurologist to diagnose MS. No test rules it in or out. Neurologists Specialize so I would get a MS Specialist to begin with. It can take awhile because they are busy. Most good neurologists take awhile to get an appointment. The one I have too 8 months and I was already diagnosed. Your PCP can do a neurological exam that is reflexes, following the finger and such. My PCP did one and found it to be very abnormal pointing to MS. She sent me to a neurologist. My first MRI showed classic MS lesions. It took two years of testing for the neurologists to be diagnosed with MS. I saw several. That is typical. Most will want an attack in a different part of the central nervous system at a different time than the ON. You can read up on the McDonald Criteria that is how they diagnose MS. They may want to do a lumbar puncture and more blood work to rule out other conditions like Lupus. They like to see changes for themselves. Many do not rely on records. They are the show me the facts doctors. Mine are not warm and fuzzy nor do they explain much. I have to ask how the neurological exam was, if I have progressed, things like that. I asked too many questions of one and she through me out of her office. She did me a favor. You can have your symptoms treated with out a diagnosis it won't change a diagnosis. Many of us take years for a diagnosis. Some are faster. If the neurologist asks you to come back in 3-6 months he is not dismissing you. A lot of the diagnosis is ruling other conditions out. The drugs to slow MS are serious drugs and they do not want to accidently give them to someone who does not have it.

Hopefully you will get a fast diagnosis. I just felt better when I understood why it took so long.

Alex

[essdipity]

Have you read the radiology report from today? Who diagnosed you with ON? What is your D level and when was it measured? Do you have an appt. with an MS-specializing neuro? All questions in need of answering before I and most here can agree with you.

Probably the most important test is the clinical exam, which you have not had.

ess

[PRW2015]

So I had a cervical and thoracic spine MRI done today. It show 2 maybe more lesions in my Cervical spine. So with this latest MRI, the optic neuritis, and low vit D I think I'm pretty much part of the group now!!! The question is what is next? Get with neuro and let him decide...

[essdipity]

*Some* MS lesions are initially mistaken for small vessel ischemia, particularly if you are older. You don't mention your age. I had the problem of non-typical lesions at first, with the radiologist suggesting ischemia because of my advanced age, relatively speaking, for an MS diagnosis. However, over time and in view of increasing abnormalities upon neurological examination, the true problem of MS became clear. Radiologists know virtually nothing about you and your overall health picture.

However, and this is a BIG however, you have no reason to give yourself a diagnosis of MS. Plenty of otherwise healthy people are low in Vit D. Plenty of people have ischemic disease which causes zero symptoms or health issues. *Some* people have had an episode of ON for whatever reasons and do not have MS. To an extent this depends on the competency of the ophthalmologist, who is the only kind of doctor who can diagnose ON. Optometrists are not MDs (just in case that's who said you had ON.)

Don't be sure you have MS. Without a thorough exam by a neurologist, you cannot possibly know. And if down the road it turns out you have MS, then you will learn to cope just fine. Everyone here does. Fixating on a disease in the absence of evidence is a sign of health anxiety. Luckily that's a lot more curable than MS.

ess

[kwarendorf]

The diagnosis of MS is primarily a clinical diagnosis. THis means it is based on findings of a clinical exam conducted by a neurologist, preferably one who specializes in MS. ON by itself does not equal MS. Given that the MRI findings have been attributed to small vessel disease. MS effects nerves, not blood vessels. In your shoes, I would think about other causes. I would also schedule an appointment with a neurologist and the follow up MRI.

Kyle

[PRW2015]

I have not seen a Neuro. I have not had a neuro exam either. My PCP is telling me to get MS out of my mind that I dont have it! Im really scared to the point that it is already my life!!

[immisceo]

Did you schedule the follow-up MRI? You mentioned one being suggested to you after a three month period. If there are changes in that time or there are new lesions, it will be evidence that a neurologist can use when determining a possible diagnosis.

Optic neuritis is strongly correlated with MS, but it can occur on its own. At this point, I'd remain open-minded and continue with the diagnostic process. Have you had a neurological exam? These often give the neurologist a lot of valuable information even when some lab tests or imaging are diagnostically ambiguous.