I’m wondering how common it is to have a clear (or 'within normal limits) first MRI but to later be diagnosed with MS? I know I’m like a dog with a bone about this but my gut feeling tells me to keep looking! I am being referred to neurology again and I will ask for another MRI and Evoked Potentials, if the neuro doesn’t mention it. So, to those of you with confirmed MS, how many of you had clear results at the start? Add to this the fact that I was born in May (and thankfully my daughter is a November baby) and my intuitive inner knowing is just strengthened. http://www.m.webmd.com/multiple-sclerosis/news/20041206/birth-month-tied-to-multiple-sclerosis-risk
My first MRI (brain only) led my first neuro to diagnose Clinically Isolated Syndrome. My second MRI (brain and spine) showed enough
lesions that my current neuro was fairly sure I have MS - diagnosis since confirmed. I very much doubt that lots of new lesions developed in the 10 months or so between the two MRIs, I think it was more likely due to different interpretations.
And as far as birth months are concerned, I am a December birthday. In fact, if lack of sunlight has any bearing on developing MS, my Mum should have it, not me - she grew up just south of the Arctic Circle, in northern Sweden. Land of the Midnight Sun in summer and very short days in winter. Yet she has excellent health and I have MS. I think that there must be many factors that work together to cause MS, any theory that looks at just one is too simplistic.
However, I think you are right to trust your instincts about your diagnosis - you know your body and your symptoms best. Keep fighting!
Oops, I don’t know what happened to the formatting. I’ve tried editing it, it looked correct but clearly isn’t. Grrrrr!
Thanks, Mitzi, I will. (I can’t seem to do paragraphs on my phone. Do I need to use HTML? It was readable, don’t worry
Apparently Scandinavia bucks the trend in terms of MS prevalence and latitude, with far fewer cases than its latitude would predict. Interestingly, in the years following the Islamic revolution in hot sunny Iran MS has shot up eightfold (though no actual data pre revolutuion available). Some attribute this to women being forced to completely cover up.
Meant to add the info is in 9th August issue New Scientist.
Interesting, thanks for that.
“All brain MRI negative patients had at least one lesion in the spinal cord using modern imaging techniques, 87% had OCBs, and 56% abnormal VEPs showing the added value of these additional investigations.9 Complete normality of all three investigations (when using optimum techniques) would thus seriously question the diagnosis of MS. In such patients with relapsing symptoms the majority have no objective signs and a non-organic diagnosis is the most common conclusion. However, a minority of patients with early relapsing remitting (often monophasic) symptoms who are initially negative upon investigation, go on to develop further problems and show abnormalities on repeat investigations. In patients with progressive disease alternative diagnoses should be considered.”
Also see the flowchart showing the process of diagnosing MS. Reikiblossom, you are right to ask for further tests.
Thanks, Xenomorph. I also need to ask what positive tests/signs there were for my FND diagnosis.
I wonder how long it will take to receive a date for my 2nd neuro referral…I just want to get it over and done with now.
What is it that makes you so sure it’s not FND?? I don’t know if you’re on the FND groups on fb, but dr stone did a talk in Edinburgh this week (there’s a video on the group), which could be helpful. FND isn’t just a diagnosis they give when they can’t find a reason for symptoms. It’s a real condition. The symptoms can be the same as ms (or Parkinson’s/any other neuro condition for that matter) and just as disabling, so the diagnosis isn’t a cope out or saying your symptoms aren’t real, they are, but just not due to disease.
Hi Kisywisy, yes I am on the FND group and yes, I’ve watched all four parts of the talk, which I found very reassuring.
I had new symptoms appear four months after seeing the neurologist: facial spasm - my right eye squints up and myoclonic jerks - involuntary sudden movements of my head, shoulders, arms, legs, torso and pelvis (thankfully not all at the same time but I do get combo’s) and the little patch of numbishness that the neuro tested for on my left foot has now spread to mildly affect most of my body. I feel like I’m wearing half a thick bodystocking on my left and one leg of a regular pair of tights on my right (with optional sock).
I have not been told how I tested positive for FND and neither is it apparent on my letter. Although I had a full MRI, it was on the lower machine, without contrast and so could have missed lesions. I had full bloods done, all clear, but no LP or Evoked Potentials.
So in my view, there are more tests that could be done to rule out or confirm MS. It is entirely possible that I have both FND and MS! My GP agreed that my new symptoms need further investigation and my Physio has found weakness in my left leg. Add to this that five years ago I had an episode of split vision which I am wondering if it was optic neuritis. Many of my symptoms fit MS, that in fact was the differential for my diagnosis but nothing was found on the MRI which meant not MS.
Like I’ve said, I’m not convinced. My gait has changed, I currently feel like I’m in remission as the myoclonus is less frequent and the numbishness a bit less intense but neither have gone completely. I just need to know for sure.
My first MRI showed shadows and small lesions, blood test at the time showed high ANA readings, which usually indicate an auto-immune issue. My Neuro at that time pursued a different line of treatment and put me under “Idiopathic, Intercranial Hypertension”.
Symptoms got far worse, full numbeness in both lower legs for 3 months, visible spasms, optic neuritis, what was thought as labrithitis was actually a severe relapse, slurred speech, locked back spasms and pain etc.
Back to see the Neuro, second MRI had distinct lesions, lumbar puncture was definitie for O bands, ANA readings still high. Third MRI (three months on from last one) with dye, had fresh bright lesions. Rhumatologist ruled out lupus and devics and other auto-immune illnesses, took a long time and lots of tests. It takes patience and understanding to go through this for any disease.
You have to trust in your Neuro and your team, they will work through all eventualities and things you have never heard of. Before getting a whiff of MS, they want to rule everything out. MS is the last hurdle.
MRI’s are really not enough to understand what your body is doing, I hope you get answers… Work through it
Thanks, I’m doing my best! It is so hard waiting so long for treatments and further appointments. I have had to be persistent and have managed to get some Physiotherapy at least. I have the CBT and Neuro appointment in the pipeline so all I can do is wait (though if I got noteably worse I would go straight back to my GP or A&E if appropriate). This morning I’ve woken up with a headache - possibly a migraine (light sensitive, don’t feel like eating but will try soon) and the numbishness has spread further down the side of my tongue. It is subtle but I’m all too aware of these little changes. One for the symptom diary again.