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Does this sound like MS?

Well, I am sure I am not the first one here to ask this question- I have had years of intermittent symptoms that I believe are suggestive of MS or some MS-like illness and would like some input from all of you on this forum. I have been seeing a neurologist lately about it but so far no diagnosis. Here is my story:

For several years I have had periods of chronic pain and nerve sensations (paresthesias?) in various parts of my body. These symptoms tend to cycle and occasionally I will get a blessed pain-free period for a few weeks or even a few months. For the past few months the cycles have been relentless where there is rarely a time where I am not in some sort of pain or extreme discomfort. These sensations have included:

  • chronic pain in the left neck and jaw

-chronic pain in the back/hip

-tingling/burning/tickling sensations from head to toe (this is absolutely nerve related and is global- all over the body). This is by far the worst symptom to tolerate. NOTE: these are not the “pins and needles” or “limb falling asleep” feeling that some people think of- it is more like a prickling or crawling sensation.

  • a few episodes of temporary vision loss (like what happens if you stare directly at the sun and are “blinded” for a few minutes)

-pain in various joints (knees, wrist, ankle) that feels like a sprain but was not due to any injury and can come and go spontaneously)

Currently the bodywide prickling and tingling is intense and relentless, and I am becoming desperate. I have had many, many blood tests, imaging of various body parts, and nothing significant seems to turn up. Blood testing last year showed low Vitamin D, that was the only notable thing. I did have a brain MRI a few years ago that was normal (no lesions). I may be having another brain MRI soon at the request of my neurologist.

It is possible that my current symptoms will go away in a week or two, but they are very likely to cycle back or be replaced by something else.

Does this sound like MS to any of you? There is certainly some kind of chronic illness going on that seems to be related to the nervous system, but I am confusede as to what it could be. Note that I do not typically have any functional problems, mostly it is just sensory issues (pain, paresthesias).

Hello

No, you’re absolutely not the first person to ask this question. And the answer is always the same: we don’t know.

The big problem with MS (as you no doubt already know) is that there are many, many symptoms. Plus, huge numbers of these symptoms are shared with other diagnoses.

So some of your symptoms may look like MS, and some may not.

Equally, we all experience our own variety of MS. So what might look like MS to me, may not to the next person. Honestly, asking us if your symptoms look like MS is about as bad as asking Dr Google. Except that we tend to be honest and say that we just don’t know.

Really, all you can do is trust your neurologist. But possibly ask next time you see him/her (or write and ask if the MRI is likely to be before you see him/her) whether the next MRI could include the entire spine as well as the brain. This way you’d be absolutely clear, if the MRI shows no demyelinating lesions anywhere in the entire CNS, then you’d know it’s definitely not MS.

Best of luck.

Sue