Diagnosis frustration

Well about 10 years ago I was diagnosed with MS. A while later the same neuro said he thought maybe I didn’t have it, and that maybe it was stress…phew! Since then I have been on a roller coaster of have I or haven’t I ? Couple of years ago I had a funny turn, and I lost some vision in my right eye, which returned after about a year. Current neuro still says he’s not sure if its MS and doesn’t want to label me. Am sent to ophthalmologists who find nothing wrong with workings of eyes. Eventually eyesight returns until a few weeks ago. Neuro sent me for CT scan and the opening lines are words to the effect of, this ct scan will of course not show up the MS lesions indicated on MRI in 2011! I am I going bonkers?

It sounds like the neuro might be going bonkers! Why did he send you for a CT scan? Did he say?

If he wants confirmation of MS, surely an MRI, VEPs, LP are the way to go and not CT? Unless he’s trying to rule out something else?

Karen x

Hi Karen You are so right, I have no idea why he wanted a CT scan done. I have had previous MRIs done, but he always said the lesions shown were not MS ones. Then the radiographer says on this latest report that he was asked to compare the CT with an earlier MRI that did show MS lesions. I am as always confused and irritated by the neuros I see, but sincerely thank you for taking time to write to me. Soo x

Hi, have you and I seen the same neuro?

Actually I`ve seen 13 in as many years! But one in particular overturned my dx of PPMS, after many years and that was confirmed last year. My dx is now;

idiopathic spastic paraparesis/cause unknown/possibly genetic.

Fun, innit?

luv Pollx

Oh poor you! I haven’t clocked up 13, wow, mabe that’s a record? I’m not sure if I currently have a diagnosis. My doctor has no doubts at all and is treating me on that basis. The MRI s show ms lesions. My problem is my eyesight in my right eye keeps coming and going. It’s like having only one contact lense in. So, because my current neuro is so bonkers I have to go through loads of eye tests only to show my eyes fare a hundred percent healthy! Your current diagnosis sounds…well, I don’t know what it sounds like… Bonkers seems the best word, especially if you have already been diagnosed! Thank you so much for your post, makes me feel less alone in this mysterious world of contradiction. Sue x

You`re welcome Sue. I havent had any eyesight problems…just a twitch under 1 eye. neuro offered me botox for it. I asked if they could do both eyes, so i dont look even more weird. he said i declined the offer.

luv Pollx