New to this, unsure if I even have MS........

[Bdonato112]

My name is Bryanne. I am 31 years old. I have been struggling with recurring "meningitis" or what I thought was meningitis for several years. I recently had MRI's of my brain and entire spine with and without contrast. My brain shows no lesions or areas of concern. However, my cervical spine shows "two small nonenhancing T2 hyperintensity lesion located within the left posterior aspect of the cord at the C2-3 level and within the right posterior aspect of the cord at the C4 level. Differential considerations include small MS plaques and sequela of prior cervical cord myelitis. There is no evidence of active demyelination. Clinical coordination for MS and followup is recommended to evaluate for change."

There is evidence of bulging discs and tiny protrusions of discs but there is no spinal stenosis or neural foraminal stenosis. So I believe I can cancel out stenosis or spinal cord injury, right?

I have not had any recent lumbar punctures or EMG/NCS. The last lumbar puncture was done during my first bout with meningitis about 10 years ago.

I have headaches almost daily and migraines maybe once to twice per month. Although, I do not believe that MS "rules" follow with headaches and migraines. I am taking 20mg of Noritriptiline a night. This makes me very drowsy in the mornings. I used to run and work out every morning as I try to be health conscience and fit. Since taking this medication for the past month, I have not been able to get up at 4am like I used to.

I have a positive L'Hermittes sign as my feet turn tingly when I bend my neck forward. I have "fuzzy" or numb fingers most of the time and my toes feel the same way.

In the past, meaning last year, and a couple of years ago, I have had instances where my right arm, down my right side, my right breast and chest were almost completely numb. During these instances the numbness lasted about 2 weeks and then improved.

I have done much research. I am seeing a neurologist now that I do not care for. He told me that he is not concerned with my symptoms and MRI and that I should just repeat my brain and neck MRI in one year. He told me that we just have to wait until my "meningitis" comes back and then admit to the hospital for more tests/treatment. I am seeking a second opinion this coming Friday and have waited 4 months to get in to see them.

I guess I am in desperate need of trying to figure out what this might be as there can be so many central nervous system diseases and syndromes. I cannot miss work due to this pain, numbness, tingling, weakness, and fatigue anymore. I love my job and the people I work for. I would love to get back to running every morning. I would also like to be able to be more active after work, but I have been so tired. I am wondering if anyone has any insight.....

Thank you!

[jreagan70]

Hi Bryanne:

Here are my impressions.

I have been struggling with recurring "meningitis" or what I thought was meningitis for several years.

Unless you've been absolutely, positively diagnosed by a physician with actual meningitis, don't ever EVER use the word meningitis to describe yourself or your symptoms. It's an unfounded contaminant in your medical history that can only distract your doctors' attention from what's actually going on.

A lot of people think they have to put a name on their symptoms, but they end up picking the wrong name. Doing that 1) wastes doctors' time following a curve ball, and 2) kills a person's credibility when the doctor figures out that the person doesn't actually know what they're talking about. If your doctor finds out that s/he can't trust what you say, your medical experience can become much more difficult.

So it's in your best interest to just describe to your doctors (in this case your neurologist) what your symptoms feel like (I had these episodes where my arm went numb for two weeks), NEVER AGAIN use the word meningitis, and let the doctor figure out what's going on. Time with doctors is precious. You've already waited four months to get your second opinion -- it's best not to waste it sending the neurologist chasing wild geese.

If you need to call the episodes something, you can say you had episodes of neurological symptoms, and then describe your symptoms.

The last lumbar puncture was done during my first bout with meningitis about 10 years ago.

That's what I'm talking about. If you weren't diagnosed with meningitis -- or anything in particular -- the best you can say is that you last lumbar puncture was done during your first episode of neurological symptoms[/QUOTE].

I have a positive L'Hermittes sign as my feet turn tingly when I bend my neck forward. I have "fuzzy" or numb fingers most of the time and my toes feel the same way.

That's not unusual for a cervical cord lesion(s). Right now it might be anywhere from interesting to scary for you. But after awhile, the newness wears off and it becomes a case of it is what it is and nothing to pay a lot of attention to anymore. It might go away, it might not. The more attention you give it, the bigger in your perception it will get. The less attention you give it, the smaller in your perception it will get, which will allow you to put your attention on things that please you, which makes life better no matter what else is going on.

I am seeing a neurologist ... He told me that we just have to wait until my "meningitis" comes back and then admit to the hospital for more tests/treatment.

That's actually not too far off, except that being admitted to the hospital probably won't be necessary if you don't actually have meningitis or anything debilitating. Most MS is evaluated and diagnosed during regular doctor's office appointments, and outpatient imaging and lab work (mostly to rule other conditions out).

The "coming back later" with more symptoms fits in with the diagnostic criteria for MS. (You can google the MacDonald diagnostic criteria for MS -- you want the 2010 revision.)

The diagnosis of MS requires two separate and distinct episodes of signs or symptoms that are characteristic of a demyelinating event (not just nonspecific symptoms). One episode can consist of the history of such an episode. So your history of a numb arm that lasted for two weeks can count for that.

But the other episode must be something that is observed by an appropriate medical person. It can be evidence of physical signs or symptoms that are characteristic of a demyelinating event, such as an abnormal finding on a physical neurological exam. It can also be a new lesion evident on MRI.

Either way, with MS, the diagnostic criteria require evidence of two episodes of demyelination that are separated in time and space. A competent neurologist who is following the MacDonald diagnostic criteria won't diagnose you without evidence that meets those criteria. A new neurologist can't diagnose you without historical evidence that shows two episodes, with actual observable evidence of one. If you don't have a previous MRI that's different from your current one or current evidence that's characteristic of a demyelinating event, neither your previous or your new neurologist will be able to diagnose you immediately if they're following the diagnostic criteria.

That's also why the radiology report said that followup is recommended to evaluate for change. The diagnostic criteria require a change.

Whether a neurologist will prescribe medications for symptoms relief depends on whether they have enough evidence by and for which to prescribe. That can be a subjective call. Your first neurologist might be one who doesn't feel comfortable prescribing for symptoms without a more solid diagnosis. Without a diagnosis, he has no reason to see you regularly. And if he isn't going to see you regularly, he isn't likely to start following you just to follow your symptom relief medications. That's not what a specialist is supposed to do. Your primary care doctor can do that.

The next neurologist you see might be completely different and more willing to prescribe for neurological symptom relief.

I am taking 20mg of Noritriptiline a night. This makes me very drowsy in the mornings. I used to run and work out every morning as I try to be health conscience and fit. Since taking this medication for the past month, I have not been able to get up at 4am like I used to.

Who prescribed it for you? It's only one medication. It might not be the best one for you. There are many others to try that might work just as well, or better, with fewer side effects. If your primary care doc prescribed it, s/he might not be familiar with all of the possible medications. If the neuro prescribed it for you, it's a fairly simple medication with low risk, which can explain it was tried early on before the more complicated choices.

I guess I am in desperate need of trying to figure out what this might be

Even though you're feeling somewhat desperate, try to chill. Desperation is not a good thing. Desperation clouds thinking and makes people make bad choices. It also tends to attract more desperation and bad energy. Diagnosis, treatment, and possible recovery all take as long as they take. They can't be hurried by desperation and worry.

If you're missing work, have you looked into whether you qualify for time off under the Family and Medical Leave Act (FMLA)? If you qualify, you have job protection and up to 12 weeks of unpaid time off during a year for illness and medical treatment -- and you can take it incrementally if you need to. If you can get even your primary care doctor to sign your FMLA paperwork, you can be covered and won't have to be quite as worried about missing work.

Try to chill, and best wishes for your upcoming neurology appointment. (And ixnay on the "meningitis," 'kay?)

[palmtree]

There is a special message board on this site for those who do not have a dx.its called"Limbo Landers".

JR is right about how to approach doctors. These days, an intelligent person with web access can walk into a doctors appointment knowing every angle. Knowing all that is empowering but doctors, although they have come a long way on the emotional maturity, they still want to be the brilliant ones who come up with a diagnosis.

It might be a good idea to set aside Google for awhile. Pay attention to your symptoms, maybe keep a log. Until I got on this site I couldn't put words to my symptoms. I knew I was walking funny but didn't realize the problem was balance.

Everyone wants a diagnosis because they want to find out what is wrong to they can fix it. The trouble with MS is there is no cure and treatments that can only give us hope that it might not get worse so fast. A diagnosis is the booby prize.

Regarding the noritrytaline, I was given that for migraines, too. It can cause nasty symptoms.like tremors, difficulty standing on one foot to name a few. Also if you are prone to headaches, a lumbar puncture is famous for causing a headache. It's possible to make a dx without the LP so don't rush into it.

[SNOOPY]

Hello Bdonato112 and welcome to MSWorld.

There is evidence of bulging discs and tiny protrusions of discs but there is no spinal stenosis or neural foraminal stenosis. So I believe I can cancel out stenosis or spinal cord injury, right?

No, that is not right.

Bulging discs/disc protrusions can cause Neurological symptoms if the protrusion/bulge is affecting nerves. This should be evaluated by a neurosurgeon.

I have a positive L'Hermittes sign as my feet turn tingly when I bend my neck forward. I have "fuzzy" or numb fingers most of the time and my toes feel the same way.

I am going to make an assumption that when you bend your head down the symptoms that happen only last seconds? If they don't last seconds then it's not Lhermitte's.

When related to MS Lhermitte's is caused by cervical spinal cord lesions. Lhermitte's is not exclusive to MS as there can be other causes. If your bulging discs are affecting nerves this could be a cause for Lhermitte's.

Lhermitte's sign causes:
http://www.rightdiagnosis.com/sympto...ign/causes.htm

[JerryD]

So to sum up these responses, let's review ! You may need to consult another neurologist. You have trusted Dr. Google way too much. You should get all of the appropriate blood tests (labs) and forgo the LP, for now . Good luck