Hi all and Happy Mothers Day to all you mums on here,
I have lesions in my spine and have been diagnosed with transverse myletis. EP clear and all blood tests clear. I had a brain mri two weeks ago and went to see a neuro on tuesday to get results. I was all geared up to get news and Hubby came with me for support. Neuro started by asking general questions about my health and giving me a ‘once over’ (you know checking eyes etc). Anyway we asked her the results of brain scan and she said ‘we THINK its all clear’, hubby crossly replied ‘what to you mean you THINK!!’. She said she needed to look at scans that afternoon but radiologist hadn’t reported anything. She said she wont see scans untill that afternoon with consultant, she said they always look at scans after appointments?? she promised she would phone me that afternoon by 6pm. All seemed abit strange…Anyway I walked out of there happy and told friends family etc I had the all clear. Surprise surprise…she didn’t phone me.
I phoned her wednesday morning, her secretary said she would ask her to phone me.
She finally phoned on Friday evening (when I was at work and not prepared for news) and said I do have lesions in brain (more than someone of my age should) and she will be writing me a letter. There will be no more tests and as I am well at mo, basically get on with life…she said twice she is NOT diagnosing me with ms.
So now i want to know my chances of going on to get MS, the neuro said my chances are now higher. Does anyone know anyone who has had these results and then didn’t get MS?
I feel like I have a big black cloud hanging over me now. Feel really down and a bit stupid as have told all friends and family tests clear and they are all so happy!.
So, apart from a her being totally rubish in the way she gave me the news,
Sorry…meant to add…what do you make of all this???
What a very peculiar thing! Why on earth hadn’t she looked at your scans? Very very strange! And if it is the norm, what a stupid, wasteful procedure!!!
The only reason I can think of why she wouldn’t diagnose MS is that you have had only the one attack. If this isn’t the case then I really do think you need to write to her and ask exactly how your history and MRI results sit versus the 2010 McDonald criteria.
If you’ve only had the one attack, then a diagnosis of TM or probable MS is the furthest she can go.
Actually, there is a chance that your brain lesions are in the “wrong” place versus the criteria, but if that’s the case, I would be pushing for a second opinion if I were you. These things are sometimes open to interpretation.
The chances of someone with TM developing MS is much higher if they also have brain lesions. I couldn’t remember the numbers so I had a quick google. Found this: http://eradiology.bidmc.harvard.edu/LearningLab/central/Kaufman.pdf
I have no idea how accurate it is, but “Harvard” is usually an encouraging sign! On page 17 of this, it says that people with no brain lesions develop MS 10-33% of the time, but that people with at least two brain lesions develop MS 88% of the time. (Which of course means that 12% do not.)
One final thing. I do not like the “when she sees the consultant” thing. Is she not a consultant??? (Maybe she meant the radiology consultant?) If she isn’t a neuro consultant, I would definitely want to see one if I were you!
So sorry she made such a mess of your appointment!
Karen x
Thanks for your reply. Very helpful.
I have only had one attack and feel much much better now, not 100% but symptoms have lessened considerably.
On tuesday I didn’t really mind that I did not see the consultant because I thought it was a good sign, with her saying the scan was clear i just thought they’re not sending me to the ‘top guy’ because I am fine.
I am going to wait for her letter, which will hopefully explain how many lesions and where they are. The letter will also tell me what type of doctor she is. If letter doesn’t explain enough I will write to the ‘top guy’ (consultant) I am under and who I thought I was going to see.
Good advice, thankyou Karen.
hi vicky i was dx with TM oct 2010 but had other symptom end of 2011 now got dx of rrms…hope you get the right neuro to sort you out
take care
barry