Normal MRI so no diagnosis agony

New diagnosis and before diagnosis
1

Hi all

After taking two years to finally get the MRI results my Neuro said “your spine is perfectly healthy for someone of your age” (I’m 55 with symptoms going back to my teens). I got very upset as I’ve had lumbar MRI two years ago detailing prolapse, severe desiccation and disc pressing on nerve which results in chronic back pain and Sciatica etc!

Anyway despite having a myriad of MS type symptoms for most of my life which are now becoming debilitating she says I do not have MS! When I asked what else could be causing the nerve pains, urine and bowel incontinence and weak swallow- she said I probably have an unknown syndrome possibly related to Hypermobility Syndrome ,Ehlers Danlos and POTS - go home and look it up and I’ll probably agree! I do not agree - these syndromes barely describe my symptoms at all.

To be fair to her I got so upset she gave me a lots of time but just wouldn’t stop going on about an unknown Syndrome and a colleague she wants me to see doing research. In the state I was in I missed the opportunity to ask more questions and she didn’t show me my head MRI.

She prescribed 15mg Duloxetine (low dose as I’m on Amitriptyline but I’ve also tried Lyrica and Carbemazipine both made me worse - I’m told I’m medication sensitive) but the pharmacy said it doesn’t come in 15mg so gave me 30mg and told me to take every other day! I haven’t taken it as it’s double the dose and I’m struggling to function with tiredness as it is without more drowsy side effects.

So should I go to GP now and or ask for another opinion or more tests? I can’t stop thinking about it and crying as I really can’t cope with much more.

Mickey

2

Hi Mickey

To be fair, if the MRI of your brain and spine didn’t show demyelinating lesions, then the neurologist could do nothing but tell you it’s not MS.

However, it seems that she was particularly insensitive in the way he treated you. Obviously, you have symptoms of something that seems to behave like MS.

So she’s suggested you go and research different diagnoses? How very odd, most doctors tell you not to google different diagnoses. Ehlers-Danlos seems to have so many possible symptoms, that it seems most people could be said to be suffering from that, regardless of their initial assessment.

Or of course, she did suggest an ‘unknown syndrome’. And maybe seeing her colleague might be the way to get a different perspective of your symptoms and test results.

I can’t imagine that your GP would be able to refer you to a different neurologist for a second opinion, but it’s worth trying. I suggest you see your GP anyway and discuss this appointment, the prescription that’s not able to be filled and the possibility of another opinion.

I do hope you get some help finding a diagnosis.

Sue

3

Thank you Sue. I’m struggling to get an appointment with the GP that referred me but I guess that’s what I’ll do. Mickey