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Do I have MS?

I have had many tests done by my neurologist over the past few months to determine what is causing my symptoms of facial numbness and tingling in my extremities, muscle spasms, pain and weakness, stiffness, headaches, fatigue, brain fog and word retrieval issues, and sometimes tripping over words or not able to form them correctly.  I have had episodes of vertigo. Sometimes I have pains in my neck and legs that feel like electrical jolts or stabbing that happen briefly and go away.  All of these symptoms come and go, and are worse some days than others.  There have been periods when I have felt ok or symptoms have not been as persistent.  However recently I have been very stiff in my left fingers and my arms have ached for several hours, then it goes away.

They found ogliconal bands in my CSF but not in serum.  I have a flair hyperintense lesion in frontal sub cortical white matter, right pariatrial white matter and right temporal periventricular white matter without mass effect.  My skin biopsy, EMG and spinal MRI were unremarkable.

The Dr. Is saying she doesn't think I have Lyme or MS.  I live in an area that is infested with tics (eastern Long Island) and was treated for Lyme 2 years ago, but my western blot came up negative.  Does anyone have any input or ideas?  I know there is something happening in my body, and would like to feel better and be proactive about my health.  Not wait 6 months and do another MRI.  I do not want a disease, but I would like to know what is causing my symptoms so I can get the best treatment and move on with my life.  Thanks for any help, direction, advice anyone can give me!!
3 Responses
5265383 tn?1483808356
I'm so sorry you are living the uncertainty.

In my experience (3 years in limbo), neuros, for whatever reason, seem to think it is reassuring to us when they boldly say, "No it is not ms."

The problem lies when eventually, if it IS ms, they have to eat their words.

We have no idea if you have ms or not, unfortunately.  What I will say -- you are being followed if you have another MRI and visit in 6 months.  Unfortunately, this is the nature of the diagnostic process.  You have not been dismissed to another specialist, so therefore it is not "definitely not" ms.  It is, perhaps, "not likely" ms.

As your neurologist follows you, watches your MRIs, neuro exams, etc. He or she will eventually have enough information to diagnose you.  WIth ms, or with a mimic.

How was your neuro exam?  Reflexes etc.  How long do your "episodes" last?  I am guessing that one of your neuro's reasons for hesitation is because of the locations of your lesions -- of the lesions areas considered diagnostic for ms by the McDonald criteria (2010), you only have one.  And Lyme is certainly an ms mimic.  I'm not too familiar with Lyme but someone who is will likely contribute shortly.

In certain cases, diagnosis moves rapidly for ms or a mimic, but it requires textbook lesions, in textbook locations, with clear neuro exam results and currently active lesions as well.  The rest of us take a little ... Lot ... longer.

Feel free to ask questions here any time :).  Many of us have been, or are still in, your shoes.
1639182 tn?1317147533
Lyme actually mimics MS Symptoms, so I would go back and have that re-evaluated more closely. If your current doctor refuses to have to tested, go to someone that will.

As far as MS, you have to be dx'd positive for at least 2/3 of the tests that they give you:

Tests to diagnose MS

1) Magnetic resonance imaging (MRI) of the brain and spinal cord. This test is done to confirm a diagnosis of MS .

2) Lumbar puncture (sometimes called a spinal tap). This test may be done to evaluate cerebrospinal fluid. (which you did show Oli bands - my doctor said that my fluids were high on at least 8 levels of the test)

Evoked potential testing. (Nerve Stimulation Test - basically they hook you up to a machine that sends electric pulses that measure your muscle reaction)

If you did "pass" 2/3, then you might want to go back to your doctor and ask them more questions.

If you want to talk more about it, you might have to find me on FB. I'm only here once in awhile.

Sandie Jones, Santa Clarita, CA
1 Comments
Your 2 out of 3 testing theory doesn't conform to the current McDonald criteria. It wouldn't be what this individual's neurologist is using.
667078 tn?1316000935
Is you neurologist a MS Specialist? If not you might want to see one. That said no test rules MS in or out it is all part of the puzzle. It can take years for a diagnosis. Neurologists like to follow you over time. The way they look at it is this it is not MS until they have enough evidence that it is MS. For me that was two years of testing.
Alex
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