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Neuro Letter

  • Your spinal MRI revealed some patches of inflammation similar to the ones seen in the brain. It is possible that these are asymptomatic at the moment.
  • Your oustanding spinal fluid revealed an abnormal protein, which is in keeping with the inflammation we discussed in clinic.

Bit of an anticlimax as was hoping this would lead to diagnosis but apparently not.

I have no idea what that means. I am fortunate that I have a neuro who puts it in simple terms to me. After first MRI title of letter was Diagnosis: clinically isolated syndrome, after second MRI Diagnosis MS. Can’t get much clearer than that.

I may be out of order, but that reads like a diagnosis to me unless he talked about anything other than MS when you saw him? You have lesions on your spinal cord and brain. The spinal lesions may not be causing symptoms, but are there. Your LP was positive: oligoclonal bands are a type of protein and they are consistent with “the type of inflammation” called MS. Wtf he hopes to achieve by being so wishy washy and noncommittal in his wording I really can’t imagine :frowning: Are you supposed to guess??? So sorry :frowning: Karen x

I wonder if it’s simply that they’re not supposed to diagnose in a letter - that it’s meant to be face-to-face?

Therefore he’s presented the facts as he found them, but not gone on to say what the logical diagnosis is, because that would not be appropriate, in a letter.

I’m assuming you will be called in to discuss it?

Tina

Thank you for your replies. Sorry I have not been back on since. I felt he sounded very bored to be honest in his letter (sorry the bullet points didn’t come out although I used them!) and he said at the end:

“I note that you are due to see me in clinic soon when we can discuss these results in detail. In the meantime if you develop any neurological symptoms I would be grateful if you notified us through your GP”.

I have no appointment letter but when I originally saw him he said he would see me in 3 months time (i.e. end of May).

I do have and have had symptoms which I reported to the doctor but they are liveable with as are only more numbness (on the opposite side to the first attack) and a kind of cold yet sunburny feeling to my thighs/hips and as they didn’t offer any treatment for the first attack I presume this would be the same. x

The only treatment for relapses is steroids, which are arguably better reserved for big relapses. It’s important to let your neuro know that you are having another relapse though, even if it’s not as bad as the previous one - it’s not just diagnosis that’s involved, it’s also eligibility for DMDs (you need at least two “clinically significant” relapses in two years for them).

Kx

I will go to see my GP this week and list through the recent symptoms. I tend to play everything down to people as it’s hard to describe the feelings and sensations to those that haven’t/aren’t experiencing them and I generally never go to the doctors unless I’m feeling very ill but in fairness to him, he seems very interested in my symptoms which feels bizarre!

I’ve just called the Consultant’s Secretary to find out when I might have my next Neuro Appointment and she said around 20th May - they wrote the results letter on 3rd April but I guess there is just a large volume of people all fighting to see neurologists. Annoying though because like everyone here, I’m keen to get my diagnosis asap.