Hi gang, well get yourself a cuppa and a biccy or two, as this could take a while!
Yep, went for my neuro appointment this morning. I saw a new consultant.............she looked about 15! First time I`d seen her...a fact she kept referring to, when certain things I asked flummoxed her!
Now I know some of you will empathise with the poor lady, getting a barrell full from me (in the politest possible way, of course).
I had gone expecting to get my `probable PPMS` dx confirmed. How foolish was I to imagine it could be that simple?
Oh, where do I start?
Okay, she made a reference to my dx of HSP, saying that it looked like that was more likely than MS ????!!!!!! What?
Hubby and I looked at each other in shock! Then I told her what the previous neuro had said about the HSP dx being dismissed in Feb 2011. I also mentioned the 3 `blobs` on my 2008 MRI, which he believed were missed at the time.
Guess what? She couldn`t find the tangible evidence of either of these things. She showed me the MRI, to look for the `blobs`.they weren`t there!
Hubby and i reiterated that we had been shown them. we felt as if somone was playing a cruel trick on us. Cruel is a word i`ve used before to explain my overall treatment. Still fits, doesn``t it?
Back to HSP.or spastic paraparesis. She said I do have it................tell me summat I don`t know! Now for anyone who doesn`t already know.......spastic paraparesis is present in MS and many other neuro conditions..it just mean you have spasticity/spasms/poor or no mobility.
I asked her what type of MRI machine they have in Halifax.was it a T1 or T2? I could ask this `cos of the post bobowen posted t`other day about lesions not always being seen on these old giffers! I also asked if contrast was used. She said yes to my questions.
I added that I knew it can be very difficult, if not impossible, sometimes to see any lesions when a person has PPMS. She squirmed and said the MRI machine they use here does a good job. HUH!
Think I surprised her with my questions and remarks. Hubby was!
What else? Oh yeh........she asked if I would like to go for genetic testing to see if they can find the rogue genes which cause HSP.......?
I replied with that I would find it stressful and upsetting, due to the 50% chance my children could develop it. What is the point of knowing something which could harm your kids, when there isn`t a damn thing anyone can do about it?
She asked if i would like a second opinion? Second? I`ve had umpteen!
I mentioned Dr Lily, in Leeds, who is a top bloke in MS. We left it that we`d see what, if anything, she can come up with and then think about genetic testing/Dr Lily at a later date.
So there you have it, guys. I`ve got an even bigger ? on me `ead now!