Brighton Report

Jubilee weekend coming up and the day before it begins the letter arrives from Dr Nisbet along with his one to my GP (who I have yet to meet), and NH consultant Dr Hari.  The letter to the GP was probably the most descriptive of all the correspondence I have seen from any Neurologist and I will not even attempt to translate it for the purposes of this post.  But the contents of his letter to me, which do not require translation, I will reveal.

With regard to the negative oligoclonal bands, Dr Nisbet does not think it is worth repeating the LP.  Exactly why, he doesn’t explain and should I get to see him again, I will ask.  The horse has bolted on this point and I think it needless to specifically raise this now.

Where he does diverge from all the other consultants I’ve seen, is delving further into the MRI’s to make a case for either stem cell treatment or Ocrelizumab.  The previous consultants were unequivocal in refusing the aforesaid treatments as I did not meet the criteria and anyway the procedures/drugs weren’t worth it anyway.  You, dear reader, will remember this from my earlier posts.

 When I asked Dr Nisbet about the efficacy of these two drugs he disagrees with the Kent and London people and thinks they are worthwhile.

So, I must now chase up (for the third time) the radiologist’s report and find out about the next MRI.   I have a telephone appointment with Dr Walkington in 10 days time so I will raise this, if it still hasn’t materialised as well as the MRI appointment.  I will also try and find out about getting one done privately for Dr Nisbet.   Monday’s homework. 

To clarify:  I need another MRI for deeper investigation by Dr Nisbet.  Having already discovered that these consultants are quite loyal to their own machines I need to check with his secretary where he would prefer I had it done.  Even going down the private route, this will take some while.  Don’t hold your breath.

And on a finishing note those bloody snakes are back.   I find it quite laughable that about 6 weeks ago I was thinking about dropping down 100mgs to 1900mgs.  Whereas a few years back I would have been increasing the dose (I had got up to 2900mgs), but where did that get me?  

That’s for another post. Oh, and just to clarify as I know I’ve spelled his name incorrectly in my earlier posts; he is Dr Angus Nisbet.