This Is MS Multiple Sclerosis Community: Knowledge & Support

Would appreciated the considered opinion of the members of this forum.

I have had two major "episodes" since 2006.

First, in 2006, had a terrible pain in my neck for about a week where it felt like I had a terrible "crick" in my neck. It was painful and I could not make certain head movements without sharp pain shooting down my neck. This was followed a few days later by a sudden onset of numbness that affected the whole left side of my head down through the back of my neck. Everything. My ear, my tongue, my nose, my cheek, my eyelid, my head. Also, everything went foggy and I had terrible time with names and remembering specific facts.

I initially thought "stroke" and went to the emergency room where they did a CAT scan to rule out stroke. Follow-up with Neuro who ordered an MRI but nothing showed.

Eventually most of the issues dissipated except for the numbness in my head. Tried everything to relieve this including acupuncture, heat/cold compress/OTC medicines, but nothing helps.

Then, last November (2009), had another episode where I awoke and now the numbness spread to the whole left side of my body. Almost to the point of paralysis. Have not felt good since. Have been fighting extreme fatigue, PAIN, numbness, left side body spasms and brain fog. Had another MRI done as well as a spinal tap. New Neurologist and still, no diagnosis.

Have been taking a prescription anti-convulsant (believe it is used for epilepsy) drug and it has helped somewhat with the pain and numbness.

My question is, does this sound like MS to those of you who have been dealing with MS for a while?

Again, my MRI and spinal tap are clean. I do not think the two Neuro's I have seen are specialists in MS and I am thinking of going for a third opinion.

ms can look and feel like quite a variety of things.. it's a good idea to take yourself seriously and keep searching for the answers that apply to your case.

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Maybe you can try, if you have the money, to get an appointment at a large academic center? Another option, although I do not know what your chances would be, is contacting the National Institute of Health and seeing if they would accept your case. Marc, a member of this forum, managed to get an appointment with them so maybe he has some suggestions for you when and if you call? No you are not losing your mind.However what you are feeling is real to you and it sounds like you are on the right track with looking for answers. From what I have read it would be VERY VERY rare to have MS with a normal MRI and a clean spinal tap. Good luck and please keep us posted!

Scorpion --It is not at all rare to have a normal MRI and the diagnosis of MS from the symptoms. This was my situation (I had several normal MRIs; my EMG was normal too) for the first couple years; I believe there are several other people at this website have had the same experience.

From what I have read it would be VERY VERY rare to have MS with a normal MRI and a clean spinal tap.

Hi HH,

Sorry you have to deal with this, and I wish you well in finding relief. MS is often difficult to diagnose since it mimics so many other medical conditions/diseases. In fact, there is not a single symptom that is exclusive to MS, so it often becomes a diagnosis of exclusion - if everything else is ruled out, you're left with a dx of MS.

As for the MRIs, did you have them of both the brain AND spinal cord? Some people have lesions of only one or the other, so a clear brain MRI doesn't rule out MS either.

Also, the NMSS site says the following about the odds of having MS with no lesions on MRI:

(Edited to add a link to the quote: http://www.nationalmssociety.org/about- ... index.aspx )

Five percent is not a very high percentage, so if you have no lesions on brain/spine AND a clear spinal tap, your docs should probably look for something else. MS diagnosis or not, you can be treated for symptoms. The meds for MS won't make anything "feel better" anyway. Look around all the subforums here and you may get more ideas about ways to improve your general health. That has been my focus for many years, and it seems to have worked pretty well.

Good luck in finding answers.
-

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Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

HalfHearted
maybe checking with an osteopathic doctor would be helpful. If you follow the numerous threads, you'll find that MS (or MS-like) problems often started with head or neck injuries of some type--for myself, getting osteopathic manipulations, and chiropractic adjustments (esp of Atlas and C1) cleared up some major long-standing MS problems--(but only lessened, did not fully relieve the chronic fatigue part).
And these specialists might also have further suggestions.

It is so incredible how some of us slip through the cracks of diagnostics but yet we are suffering and some of us dying from something very real. I have had only one central nervous scare. one demylination lesion at c5 and c6. five years later my new MRIs show no evidence that it had ever existed. luckily I kept the mri as proof. my illness has come in and out of remission 4 times sometimes for 2 weeks and sometimes for one year so far it still remisses. this last one was primary sjogrens I watched that titer go from negative to possitive 1:1260 (high ANA titer)and back to negative in one weeks time. but in the past Other 3 times I never tested possitive for it. I have also been paralyzed by a peripheral motor neuropathy as well with no possitive tests. ataxia with no possitive test. I have had emgs, mris, skin biopsies, ver, 5 spinal taps, a somato sensory, CTs, and some really fancy blood tests and urinalysis.

My point is that I have had so many tests that a house could have been purchased with the money it costed but I still have no true diagnosis that would consistantly explain what has happened to me yet it still happened. you can see how if I didnt have an MRI at the right time they would not have caught the lesion, or the ANA titer may have been tested during a negative period. This is my reality and no one could have told me to ignore my god given instincts no man no matter how fancy his degree or his tests could tell me that what was happening was not real.

now there are so many wonderful disorders especially genetic ones out there and all these doctors want to do is say duhhhhh autoimmune duhhh I dont know or duhhh fibromyalgia
how about
addisons
the 8 porphyrias
wilsons
amyloidosis
hemachromatosis
and much much more....

hh that first episode you describe sounds like a pinched nerve. there is def something else going on there too.

have you ever thought about having some nutrient tests done? a number of your symptoms could be related to having your nutrient eq out of whack..

if you read my signature links a bit, there's a ton of info both ms specific and general - i don't agree with 100% of what's there but it's a nice starting point anyway - and you might find some ideas that relate to your symptoms.

HTH

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com