Still "Investigating"...

[Carriekick***]

Hello all! My, there is some great information on these boards! I have been a long time reader and 1st time (or maybe 2nd time) poster. I just want to toss this out and see if this sounds familiar to anyone.

I have had a couple of visits with a neuro who seems to do more talking than listening to what I try to describe to him. We are still in the investigating stages as to whether what I'm dealing with is MS. Initially he said yes, then he changed the dx to "skin sensation disturbance". Clearly I have told him it is not my skin, but primarily my left side; bilateral arm tingling, leg tingling and burning, squeezing around the chest, (which sent me to the hospital several times only to be told my heart is in great shape), dizziness, feeling of 'I know the words but I can't get 'em out!', full on fatigue, muscle spasms in legs, hands and feet, blurred vision, wobbly gait, and just an indescribable fatigue-low ebb-drained-weak kind of feeling. (btw that feeling lasts about a week or so). I guess my 2 questions are: if MRI's don't show leisons (haven't done the thoracic yet) and no other tests have been run (to date), at what point is MS diagnosed or ruled out? Have there been individuals who have had all negative test results, but have been dx'd with MS? Am I nuts for even asking such a question? (Ok...that's 3 questions...) The floor is open...have at it and I'm looking forward to your responses!

[Marco]

Welcome to the board. I'm sorry you had to come here because you are experiencing health problems and I hope they clear up for you without a MS diagnosis.

Without a direct test for MS there is not an exact process in the diagnosis process leaving much room for confusion and frustration. Generally, doctors should rule out other diseases before diagnosing Multiple Sclerosis to rule out disease mimics and prevent misdiagnosis, etc. Once everything else is ruled out, neurologists will run tests and compare your medical history and documentation against the McDonald 2010 Criteria found here: http://multiplesclerosis.net/diagnos...nald-criteria/


Q1 I guess my 2 questions are: if MRI's don't show leisons (haven't done the thoracic yet) and no other tests have been run (to date), at what point is MS diagnosed or ruled out?

Many neurologists are reluctant to diagnosis MS on border-line cases and instead place patients in "limbo." The patient is then asked to "wait & see" what happens over time. You may even meet all the diagnostic criteria still not get a definitive diagnosis of MS. If you currently do not meet the criteria, they will not necessarily rule out MS, but again take the "wait & see" approach.


Q2 Have there been individuals who have had all negative test results, but have been dx'd with MS?

It is not typical that you would get a MS diagnosis without appropriate lesions, but it is possible. It would be even more atypical that all tests would come back normal and you would receive a diagnosis.


Q3 Am I nuts for even asking such a question?

If you are nuts it's not because you asked the question(s). You'll probably get other answers and some may contradict one other. I would suggest you start a list of questions that you can prioritize and go over with your neurologist on your next appointment. If something isn't clear please ask additional questions, but always differentiate Internet forum responses from qualified medical answers.

Also, when dealing with serious medical conditions it is advisable that you get a 2nd opinion. Even if the two doctors completely agree you are still likely to learn more about your condition from the 2nd one.

[MSer102]

if MRI's don't show leisons (haven't done the thoracic yet) and no other tests have been run (to date), at what point is MS diagnosed or ruled out?

MS is diagnosed when all of the appropriate tests have been done. Under the current diagnostic criteria, the diagnosis relies heavily on MRI findings, but not absolutely. Without MRI lesions somewhere in the central nervous system, the diagnosis relies on other tests and requires up to year of disease progression. Not just having symptoms, but progression of damage and/or disability.

It sounds like you haven't even had other testing yet so it's much too early to even think about getting an MS diagnosis.

Have there been individuals who have had all negative test results, but have been dx'd with MS?

No. And if that ever happened, it never should have.

People have been diagnosed without evidence of lesions on MRI. It happens less than 10% of the time, maybe as little as 5% of the time.

But ALL of those people have other test results that support the diagnosis.

Your asked if people get diagnosed when ALL of the tests are negative. Without some kind of positive test result, there isn't any objective evidence to identify which disease it is that's causing the symptoms. A diagnosis can't be made based only on symptoms because there are many, many diseases that have the same symptoms.

No one gets diagnosed when ALL of the tests are normal. If all of the tests are normal, there isn't any evidence that there's a physical disease going on at all. No disease can be diagnosed without evidence.

In order for you to get a diagnosis of MS there has to be some kind of positive test result, you have to meet the diagnostic criteria for MS and all other possible causes for your symptoms have to be ruled out. And it sounds like it's much, much to early for that to happen for you because you haven't even had the tests yet. So patience is the rule here.

[book lover]

Are people definitively dx when there are brain lesions consistent with MS (but none in the spine), neurological exam consistent with MS, blood tests and other neurologic tests taken to rule out other possibilities, and normal VEP?

I am having an LP next week but wonder what if that is also normal. Thanks.

[22cyclist]

Book Lover: Yes, that person can be diagnosed with MS. The physician likes to see two or more parts of the CNS involved. That can involve the brain and the brainstem, the brain and the spine (any part), or it can mean both sides of the brain. So it depends on where the lesions are in the brain. Not all persons with ms have had ON at diagnosis, but usually have had something wrong with their eyes that MS has caused. Optic neuritis, nysatagmus, intranuclear ophthalmoplegia, or the like.

The LP will help to clear up if you have any o-bands. Signs that you may have MS or some other inflammatory disease that causes them too, since you don't have lesions. If you have none it is not likely you will be diagnosed. You may just have to wait a while until they give you the next MRI to compare.

Best of luck to you with the LP. Lye flat when you get home for at least 12 hours. Have others bring you caffeine and just hang out in the bed...no pillow. That will ward off the post LP headache.

Take care
Lisa
Moderation Team

[book lover]

Thank you, Lisa for your explanation and advice - it is much appreciated. My husband says he will be "on call" after the LP so I can follow your suggestion.

[milehighmimi]

I also have a question and you've done so well answering! Why not just do the lumbar puncture first and cut to the chase? I've read that so MS patients have not had any o bands in the CSF but still had the majority of symptoms. It seems that the wait and see attitude could impact the progression of the disease by withholding treatment that could stop it or at least slow it down. I think I've had MS for years but I am now slow losing the ability to walk in my right leg. Numbness for the most part, spasicity which is impacting my gait and exhausting me.

Can treating it early cause more harm than good?

[22cyclist]

Can treating it early cause more harm than good? Yes. If you are undiagnosed there is a reason they don't treat you. It's because these DMTs can inflict harm on you. For example one of the ones I took gave me bone marrow failure. A very bad complication that I had to be hospitalized for and could have died from. The one I am on now can give me PML, a disease that can kill you. So they are very picky that you must HAVE MS before they go and stick you on these powerful drugs. In the end, you may not have MS at all. If your MRIs do not show it, and evoked potentials do not show it (if they bother with these), and your LP does not show it (after your MRIs are negative), then no, you don't get the drugs, or a diagnosis. It is best for you.

You can get drugs to manage your symptoms. Like Baclofen for spasticity, Neurontin for tingling and numbness and pain, or Lyrica for the same, Topamax for headaches, Valium for CNS dizziness, and Promethazine or Compazine for nausea.
This just depends on your neuro. If he will not treat you, go to your PCP for treatment.

The DMTs will have to wait...and that is a good thing.

Take care
Lisa
Moderation Team

[milehighmimi]

Thanks! Been on Neurontin since August, no change. Neuro started me on Baclofen Monday low dose 3 times a day for 7 days then I start the regular dose. No change. I asked her about Botox injections in my ankle to deal with the spasicity, she said no. I need to get a job and go back to work, difficult to do when my shoes fall off. Wearing Puma's to an IT job interview wouldn't fly too well.

I have terrible depression as well, sometimes what I read about MS is that it's ALS and Alzheimer's all rolled into one thing. I've been working out but what good does it really do if the muscles never really get stronger? I should be able to increase the weights not fell like I have to lower them. Sorry, very active workaholic here, this sucks.