heartland 02/05/18
Last reply 2 months ago
Confused

So another clean MRI after 12 yrs of MS type symptoms. Dont get me wrong I was initially euphoric at that news. Two apparent “attacks 12 yrs apart, the most recent and ongoing by far more severe and a raft of paroxysmal symptoms inbetween. The tinnitus and mouth stiffness have more or less been permanent for about 10 yrs.

The neuro more or less said it is not MS, based on two clean MRIs, 12 yrs apart and passing the extensive other neuro tests yesterday. He is nor denying the neurological symptoms exists, just says he has no definitive answers. He spoke about migraines with neurological symptoms. Really? I have an ear special specialist appointment to talk about my ongoing tinnitus and lightheadness soon.

I asked if were possible to have MS without lesions? He said yes but not after 12 yrs.

Sorry if my story sounds trite compared to others but just wanted to vent my frustration.

Anyone in this particular odd boat?

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heartland
2 months ago

Apologies for the typos above guys. Should alway check before you post!


stumbler
2 months ago

@heartland , you should read this, https://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools/MRI .

It contains the following statement :-

“However, approximately 5 percent of people with clinically-definite MS do not initially show lesions on MRI at the time of diagnosis. If repeat MRIs continue to show no lesions, the diagnosis of MS should be questioned.”

I appreciate that this doesn’t help much. However, MRI scans do not show a full picture and the power of the scanner does make a difference.


heartland
2 months ago

Thanks Stumbler, I certainly see your point. However the neuro was so definate, especially in conjunction with the other physical neuro tests, which I have to say were quite extensive and thorough. He was at a loss at the progression of symptoms over the past six weeks. Severe timnitus for starters, then vertigo, then tingling in extremities and face, then fatigue and finally weak legs. The latter is now the most pronounced symptom, together with ongoing internittant tingling. Actually he made a point of the latter not being a classic symptom of an attack, that is the intermittant nature of many pf the symptoms.

Sorry to be such a bore with all this on comparison to others


stumbler
2 months ago

@heartland , the only clear things about MS, and other neurological conditions, is that nothing is clear. That’s the nature of the beast. 😕

And you’re not a bore. You have valid concerns, just like everyone else. 😉


heartland
2 months ago

Thanks Stumbler.

Just difficult to know what to either to do or go to when both your GP and Neuro haved ruled out MS based on the evidence of two clean MRIs, 12 yrs apart and recent physical neuro tests…..and of course you are still feeling the same. Dont know whether to jump and down with joy or just be plan sceptical. Fatigue, weakness and tingling in various places probably worse today than ever.

Has anyone been in this position?


stumbler
2 months ago

@heartland , you need to keep up the pressure on the Doctors and Neuros.

Whilst it is comforting to have certain conditions ruled out, you need to know what exactly is causing the problems so you can consider medication to relieve the symptoms. Or even, cure the underlying condition……….

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