annoyed at neuro!

After waiting another 9 months, I at last went to see my neuro with the hope of moving forward. I’m still undxed after 6 years.

(Last time he said I have spastic paraperisis and my condition is with ms or HSP and we may never find out which one of the two I have)

He’s now backtracked on all above.

He done a half hearted exam, and basically told me he can’t find enough evidence so he is referring me to his lead consultant, who is an MS specialist, (so is he) even though he thinks ms is now unlikely through lack of evidence. And HSP is unlikely as no one in family has it. Confused!!!

My last brain scan was 2010, (clear) LP & spine scan 2011 (clear) my symptoms have progressed quite a bit since then and I’ve had to give up work. I’ve had a permanent headache for the last 6 months and doesn’t think I need another MRI! I disagree! He keeps telling me I have chronic migraine. This pain is not migraine type pain but he’s not listening. My legs and walking have also gone much worse!

I’ve just got to now wait and hope the next neuro looks at me in a new light. Why would he send me for a second opinion? Do you think the new doctor will start his own new investigation on me or simply confirm what this neuro is saying? I.e. no evidence to DX me with anything (other than chronic migraine and chronic fatigue)?

I hate neuros 's right at this moment! :frowning:

Until you see him its hard to know, He may look into everything again and to get more scans e.t.c done, or he may view the previous notes either way if your first nuro was being a div the second may be much better.

Write a list of all your symptoms and how bad they are compared to them and now, if you last scan was in 2010 then all new tests are needed, he cant tell you he doesnt think its either now without doing all the tests again to compare them.

Keep your chin up I appreciate its really hard but as a fellow limbo lander you just have stick with it and when you get you appointment, phone them up and everyday for a cancellation. I got my appoint from 9 months down to 3 weeks.

Well that sucks :frowning:

What has he offered you for this chronic migraine? There are plenty of preventative meds to choose from so, if it is migraine, surely something would work? (Actually, if it’s chronic migraine, why not refer you to a headache specialist neuro?)

As far as the next neuro, I guess how he treats you depends a fair amount on what he’s told, e.g. if he’s told you are a mystery, but not of functional origin, then you should get a proper investigation. If you aren’t convinced that’s what’s going to happen, then you should maybe get your GP involved and see if there is someone better that you can be referred to, to start again?

You should get a copy of the referral letter - probably best to reserve judgement till you see that.

Karen x